heart failure research paper examples

Global burden of heart failure: a comprehensive and updated review of epidemiology

Affiliations.

• 1 Division of Cardiology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
• 2 Heart and Vascular Theme, Karolinska University Hospital, Stockholm, Sweden.
• 3 Department of Cardiology, University Heart and Vascular Centre Hamburg, Hamburg, Germany.
• 4 Faculty of Medicine, University of Belgrade, Belgrade, Serbia.
• 5 Serbian Academy of Sciences and Arts, Belgrade, Serbia.
• 6 St George's Hospital Medical School, London, UK.
• 7 IRCCS San Raffaele Roma, Rome, Italy.
• 8 Faculty of Medicine, University of Warwick, Coventry, UK.
• PMID: 35150240
• DOI: 10.1093/cvr/cvac013

Heart Failure (HF) is a multi-faceted and life-threatening syndrome characterized by significant morbidity and mortality, poor functional capacity and quality of life, and high costs. HF affects more than 64 million people worldwide. Therefore, attempts to decrease its social and economic burden have become a major global public health priority. While the incidence of HF has stabilized and seems to be declining in industrialized countries, the prevalence is increasing due to the ageing of the population, improved treatment of and survival with ischaemic heart disease, and the availability of effective evidence-based therapies prolonging life in patients with HF. There are geographical variations in HF epidemiology. There is substantial lack of data from developing countries, where HF exhibits different features compared with that observed in the Western world. In this review, we provide a contemporary overview on the global burden of HF, providing updated estimates on prevalence, incidence, outcomes, and costs worldwide.

Keywords: Cardiovascular; Ejection fraction; Epidemiology; Guidelines; Heart failure.

Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2022. For permissions, please email: [email protected].

Publication types

• Heart Failure* / diagnosis
• Heart Failure* / epidemiology
• Heart Failure* / therapy
• Quality of Life*

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Open Access

Peer-reviewed

Research Article

The impact of heart failure on patients and caregivers: A qualitative study

Contributed equally to this work with: Colleen A. McHorney, Sonal G. Mansukhani, Milena Anatchkova, Natalie Taylor, Heidi S. Wirtz, Siddique Abbasi, Lynwood Battle, Nihar R. Desai, Gary Globe

† Deceased.

Roles Conceptualization, Formal analysis, Investigation, Methodology, Supervision, Visualization, Writing – original draft

Affiliation Patient Centered Research, Evidera, Bethesda, MD, United States of America

Roles Formal analysis, Methodology, Project administration, Supervision, Visualization, Writing – original draft

* E-mail: [email protected]

Roles Formal analysis, Methodology, Supervision, Visualization, Writing – original draft

Roles Conceptualization, Funding acquisition, Resources, Writing – review & editing

Affiliation Global Health Economics, Amgen, Thousand Oaks, CA, United States of America

Roles Writing – review & editing

Affiliation Patient Author from Cincinnati, Cincinnati, OH, United States of America

Affiliation Yale School of Medicine, New Haven, CT, United States of America

• Colleen A. McHorney, 
• Sonal G. Mansukhani, 
• Milena Anatchkova, 
• Natalie Taylor, 
• Heidi S. Wirtz, 
• Siddique Abbasi, 
• Lynwood Battle, 
• Nihar R. Desai, 

• Published: March 11, 2021
• https://doi.org/10.1371/journal.pone.0248240
• Reader Comments

Heart failure is rising in prevalence but relatively little is known about the experiences and journey of patients and their caregivers. The goal of this paper is to present the symptom and symptom impact experiences of patients with heart failure and their caregivers.

This was a United States-based study wherein in-person focus groups were conducted. Groups were audio recorded, transcribed and a content-analysis approach was used to analyze the data.

Ninety participants (64 patients and 26 caregivers) were included in the study. Most patients were female (52.0%) with mean age 59.3 ± 8 years; 55.6% were New York Heart Association Class II. The most commonly reported symptoms were shortness of breath (81.3%), fatigue/tiredness (76.6%), swelling of legs and ankles (57.8%), and trouble sleeping (50.0%). Patients reported reductions in social/family interactions (67.2%), dietary changes (64.1%), and difficulty walking and climbing stairs (56.3%) as the most common adverse disease impacts. Mental-health sequelae were noted as depression and sadness (43.8%), fear of dying (32.8%), and anxiety (32.8%). Caregivers (mean age 55.5 ± 11.2 years and 52.0% female) discussed 33 daily heart failure impacts, with the top three being reductions in social/family interactions (50.0%); being stressed, worried, and fearful (46.2%); and having to monitor their “patience” level (42.3%).

Conclusions

There are serious unmet needs in HF for both patients and caregivers. More research is needed to better characterize these needs and the impacts of HF along with the development and evaluation of disease management toolkits that can support patients and their caregivers.

Citation: McHorney CA, Mansukhani SG, Anatchkova M, Taylor N, Wirtz HS, Abbasi S, et al. (2021) The impact of heart failure on patients and caregivers: A qualitative study. PLoS ONE 16(3): e0248240. https://doi.org/10.1371/journal.pone.0248240

Editor: Claudio Passino, Ospedale del Cuore G Pasquinucci Fondazione Toscana Gabriele Monasterio di Massa, ITALY

Received: July 31, 2020; Accepted: February 23, 2021; Published: March 11, 2021

Copyright: © 2021 McHorney et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting Information files.

Funding: This study was supported by funding from Amgen Inc. awarded to all authors. Amgen Inc. provided support in the form of salaries to GG, HSW, and SA. Evidera provided support in the form of salaries for CAM, MA, SGM, and NT. The specific roles of these authors are articulated in the ‘author contributions’ section. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have read the journal’s policy and the author’s of this manuscript have the following competing interests: GG, HSW, and SA are paid employees of Amgen Inc. CAM, MA, SGM, and NT are paid employees of Evidera. NRD has received research grants unrelated to this work and consultancy support from Amgen, Boehringer Ingelheim, Cytokinetics, Relypsa, Novartis, and SC Pharmaceuticals unrelated to this work. This does not alter our adherence to PLOS ONE policies on sharing data and materials. There are no patents, products in development or marketed products associated with this research to declare.

Introduction

Chronic heart failure (HF) results when the heart cannot pump enough blood to meet the body’s needs [ 1 ]. HF is considered a global epidemic—with an estimated 64 million individuals affected worldwide and likely many more caregivers impacted—which is anticipated to drive healthcare costs up to USD 70 billion by 2030. Annually, HF diagnoses lead to more than one million hospitalizations and approximately 300,000 deaths in the United States (US) [ 2 , 3 ].

Chronic HF is characterized by slow progression of symptoms that include breathlessness with exertion, shortness of breath, fatigue, tiredness or weakness, difficulty breathing when lying down, sleep problems, and swollen legs or ankles. These symptoms—especially shortness of breath and fatigue—diminish the health-related quality of life (HRQoL) of both patients and their caregivers as many patients are unable to function independently in their day-to-day lives [ 4 ]. Depression is also a common psychological sequalae of HF [ 5 – 9 ]. Furthermore, the day-to-day unpredictability of HF (i.e., acute exacerbations and hospitalizations), medical management issues such as pill burden and side effects can cause distress and feelings of hopelessness and helplessness in both HF patients and their caregivers [ 10 ]. While there are successful HF therapies which have demonstrated reductions in mortality and morbidity, very few HF drugs have been indicated for improving HRQoL in HF patients in addition to physical function, or symptoms [ 11 ].

Several studies have documented the impact of HF which results in substantial caregiver burden experienced by loved ones [ 12 – 18 ]. In other words, living with HF is a “shared experience” for both patients and caregivers [ 14 ]. Caregivers have reported experiencing distress, depression, anxiety, social isolation, and health problems related to caring for a patient with HF [ 12 , 14 ]. Research has also demonstrated that, across various cardiovascular diseases, caregiver physical or emotional strain is an independent risk factor for caregiver mortality [ 19 ]. The totality of physical and emotional impacts on the caregiver of HF patients suggests that caregiver burden and well-being are important outcomes to consider for chronic HF management.

HF management is complex and requires daily coordination of and adherence to multiple medications and a set of lifestyle changes related to dietary restrictions, fluid intake, exercise, and weight monitoring. Frequent healthcare appointments—across several different provider types—are often necessary for HF patients. Caregivers play an important role in day-to-day HF management [ 16 , 20 , 21 ], and existing evidence suggests that the HF treatment journey is challenging for patients and caregivers alike [ 10 , 12 , 15 – 17 , 22 , 23 ]. As the US population continues to age, HF management will have an increasing impact on the caregivers of HF patients.

The goal of this research is to explore and present the symptom and symptom-impact experiences of HF patients and their caregivers. Unlike some other chronic diseases (such as hypertension or dyslipidemia), day-to-day symptom impacts in HF are not an experience and journey just of the individual patient. Rather, caregivers experience their own burden, strain, distress, and hardships by the act of caregiving for HF patients.

While past research has characterized the burden of HF on patients and caregivers, it is not without limitations, which motivated the current research. First, some studies were published 11–13 years ago [ 10 , 24 ]. Treatments for HF have advanced across that period, perhaps making these more dated studies less salient and informative in terms of the patient and caregiver journey. Second, some sample sizes have been quite small (fewer than 20 patient and/or caregiver participants [ 13 , 17 , 23 , 24 ]), which can limit their generalizability. Third, other past studies were conducted at single sites within a given country [ 15 , 17 , 22 , 24 ], which also contributes to generalizability issues. Fourth, two studies were literature reviews with articles dating up to 20 years ago [ 14 , 18 ]. Fifth, of the past qualitative studies, all were one-on-one interviews. While one-on-one interviews and focus groups each have inherent limitations, focus groups can often lead to more discerning discoveries because group interactions can yield more meaningful findings than individual interviews [ 25 ]. With these limitations and considerations in mind, we embarked on qualitative discovery research with 64 HF patients and 24 caregivers of HF patients sampled in 2017 and 2018 in three US cities (in different geographical regions) with an aim to cross-validate past studies and contribute new insights.

Study design and sampling

This was an observational, cross-sectional, qualitative, focus group study in the US wherein 19 in-person focus groups were conducted with 64 patients with HF and 26 caregivers. The study independently recruited patients and caregivers. In this article, the term “caregiver” was used to define anyone who cares—unpaid—for a friend or a family member living with HF.

Patients included in the study had to be at least 45 years old at the time of screening and self-reported the following: a diagnosis of HF, at least New York Heart Association (NYHA) class II, and taking at least one HF prescription medication in the last six months. Caregivers were eligible if they were at least 21 years old, a relative of any HF patient (not necessarily participating in the focus groups) with at least NYHA class II status who is not participating in the study, and a self-report of spending at least eight hours a week caring for the HF patient. All participants were recruited using market-research vendors across four US locations: Beverly Hills, CA; Skokie, IL; Boston, MA; and Philadelphia, PA. A standardized recruitment script was used by the vendors to identify potential participants from their proprietary databases. The sample was selected to represent as diverse a participant mix as possible regarding gender, age, socioeconomic status, and ethnicity. Male and female sessions were conducted separately as were patient and caregiver sessions. All procedures and patient-facing materials were approved by Ethical & Independent Review Services institutional review board (IRB), which is an independent ethics committee, before study initiation. All participants were consented verbally and in writing. The identification number for this study is 17191.

The patient and caregiver focus groups were conducted using semi-structured discussion guides. The patient guide was carefully designed to elicit physical and emotional sequelae, self-management, medication adherence, and manifestations of worsening and improvement in overall health status to understand participants’ symptom experience, impacts on day-to-day functioning, and solutions and resources that could facilitate the HF journey. For the caregiver groups, the guide was designed to understand length of experience, roles and responsibilities, extent of educational resources and social support, and facilitators and barriers to caregiving. Both discussion guides were reviewed by two HF patient advocates who participated in the study to provide feedback on the focus group questions. Table 1 gives illustrative questions that were used in the focus group guides. All focus group sessions were audio- and video-recorded (with participants’ permission) and lasted approximately 90 minutes.

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https://doi.org/10.1371/journal.pone.0248240.t001

Following written informed consent, focus groups were conducted by one of the researchers (CAM) who used probing and non-verbal techniques to elicit responses from participants following the semi-structured interview guide.

All participants also completed a self-reported sociodemographic and clinical questionnaire. Recognizing the wealth of literature around HF symptoms and impacts, two small (8.5x11-inch) posters were developed that included the cardinal HF symptoms and impacts ( S1 Appendix ). This was utilized to cue the participants and act as a steppingstone to other discussion topics.

Qualitative data analysis

All audio recordings of the focus group discussions were professionally transcribed. Upon receipt of each transcript, one researcher (NT) performed quality checks. The goal of this step was to correct any transcription errors and remove any personal health information found within the transcripts. A content-analysis approach was used to analyze the focus group discussion data (based on notes, transcripts, and audio recordings). All analyses were performed using an analysis software program (ATLAS.ti version 7.5.2). A coding dictionary was developed prior to qualitatively analyzing the transcripts to capture the symptoms and impacts elicited in the sessions. The coding dictionary was revised in vivo to include codes for new concepts. Once all transcript coding was complete, all codes were thoroughly reviewed by a second team member to ensure it was performed in an accurate and consistent manner. The qualitative output included the text captured by the coding process for each code and the participant quotes organized by HF symptoms and impacts from the perspective of patients and caregivers interviewed.

Quantitative data analysis

A DataFax database for all quantitative data was developed, tested, and validated prior to data entry. DataFax is a 21 Code of Federal Regulations (CFR) Part 11-compliant, direct fax-to-computer data management system that relies on optical character recognition (OCR) software for collecting study data from case report forms. The quantitative data entered by the OCR software was reviewed by two independent reviewers to ensure accuracy. Descriptive statistics (number, mean, standard deviation [SD], and frequency) were presented for the sociodemographic and clinical form items.

A total of 64 patients who met the eligibility criteria participated in the one-time, focus-group discussion. Focus-group discussions were conducted between April and September 2018.

Table 2 provides the demographic characteristics for the 63 patient participants. One participant did not satisfy the terminal status of the 64 participants. The sample consisted primarily of older adults (59.3±8 years; range = 45–78 years) who were non-Hispanic (n = 58; 92.1%), White (n = 36; 57.1%), and female (n = 33; 52.4%). Over 41.0% (n = 26) of the sample was African American. About half the participants were married or living with a significant other (n = 31; 49.2%). The sample was fairly well educated with 39 (61.9%) reporting some college or university education or higher. Just over one half of the patient sample was employed full time (n = 24; 38.1%) or part time (n = 9; 14.3%) while 17 (27.0%) were retired and 10 (15.9%) were disabled.

https://doi.org/10.1371/journal.pone.0248240.t002

Table 3 provides the clinical characteristics for the enrolled patients. Most patients were NYHA class II (n = 35; 55.6%) or III (n = 19; 30.2%). The mean duration since HF diagnosis was 8.9±8.5 years (range: 0.5 to 56.0 years). The most common self-reported comorbid conditions were hypertension (n = 34; 54.0%), arthritis (n = 28; 44.4%), myocardial infarction/heart attack (n = 14; 22.2%), anxiety (n = 12; 19.0%), depression (n = 10; 15.9%), and diabetes (n = 10; 15.9%).

https://doi.org/10.1371/journal.pone.0248240.t003

Table 4 provides a summary of the spontaneous and probed HF symptoms. All of the cardinal HF symptoms noted in past research were identified in this qualitative work. The most commonly-reported symptoms (reported by at least 20.0% of the patient sample) were shortness of breath (n = 52; 81.2%), fatigue/tiredness (n = 49; 76.6%), swelling of legs and ankles (n = 37; 57.8%), and trouble sleeping (n = 32; 50.0%).

[Participant name 1 , FG#1]: “the concomitant shortness of breath , that’s the #1 thing . It really plays havoc with a whole lot of other things . So the second one is the speed at which I get fatigued . And the length of time it takes to recover from being fatigued . And that is physical fatigue that–like [participant name 3] mentioned , it also really wipes out your ability to , like , stay focused , or even care to focus . ”

https://doi.org/10.1371/journal.pone.0248240.t004

Table 5 provides a summary of the spontaneous and probed HF impacts from the patient perspective. A total of 47 day-to-day HF impacts were elicited from the patients. The top-three impacts were changes/reductions in social/family interactions (n = 43; 67.2%), dietary changes and restrictions (n = 41; 64.1%), and difficulty walking and climbing stairs (n = 36; 56.3%). Several mental-health sequelae were noted as day-to-day impacts including depression and sadness (n = 28; 43.8%), fear of dying (n = 21; 32.8%), anxiety (n = 21, 32.8%), and difficulty concentrating (n = 10; 15.7%). Other common physical impacts were: less exercise or low endurance for exercise (n = 31, 48.4%), being able to engage in recreational activities and hobbies (n = 28; 43.8%), difficulty performing work or job responsibilities (n = 17; 26.6%) or household chores (n = 15; 24.4%), difficulty lifting or carrying items (n = 13; 20.3%), needing frequent rests (n = 13; 20.3%), and frequent urination (n = 12; 18.8%). Eleven patients (17.2%) expressed that they disliked taking their medications predominantly due to side effects such as frequent urination.

[participant name 1 , FG#1]: “Life’s a chore a lot of the time . To go to the store is a chore . To go to dinner with friends is a chore . A lot of times , to be able to go out and fiddle around in my garden is a chore . To do the things that used to be able to give me joy are now chores . ” [participant name 2 , FG#4]: “Well , I sure would like to exercise . I’m a big sports fan , but there’s just no way I can do what I used to do , I mean not even close . You know , that’s--that’s--that’s just very disheartening . I wouldn’t say depressing , but certainly it’s disheartening to see a lot of things I used to do and could do that , um , that I won’t even attempt to now . Because I know what the outcome will probably be . Um , socializing with friends and family , I kind of withdraw , because I know that when they’re ready to do certain things , I’m going to be no , I can’t really , you know , even come close to participating fully . So , uh , I take—I’d just rather not even get started , you know , and that’s kind of what I’m doing . Um , that’s , you know , pretty tough . Um , certain jobs I might want to do that I’m , uh , limited , that I know I won’t be able to do , you know . Um , and then , you know , my--the focus . Uh , a lot of times , um , you know , certain things I have to take care of , I need to--to keep really stay focused for a long time , really concentration level . Then , um , you know , once I feel those pains coming on , you know , that--that takes over everything , you know . That shoots right to the top of the list , and make sure I can get back to feeling normal . ” [004–107]: “Depression . Yeah , depression , that sets in real fast , because you can’t--you just feel that you’re worthless , that , you know , because of things . And you depend on people to do things for you , and I don’t like people doing things for me . It bugs me . But it’s just--it’s just depression . And everybody tries . Oh , the whole family tries to be nice and everything , and I wish they’d just go about being the way they were . You know , but it’s just that they just feel that you’re frail and you’re fragile and all , and it’s just , like they’ve been saying , people--people don’t understand . They--they just can’t comprehend it . ” [002–115]: “Um , just discomfort right after taking my medications . I don’t know what that’s all about , and it usually lasts for about 30 minutes . ”

https://doi.org/10.1371/journal.pone.0248240.t005

Table 6 provides the demographic characteristics of 25 caregiver participants. A total of 26 caregivers were interviewed, but one participant did not fill out the sociodemographic form. Caregivers ranged in age from 33 to 71 years, with most identifying as non-Hispanic (n = 23, 92.0%), White (n = 19, 76.0%), and female (n = 13, 52.0%). The type of relationship to the HF patient included spouse/partner, child, sibling, or other relative; more than half (56.0%) of the caregivers lived with the HF patient. Caregivers were well educated with almost all (96.0%) reporting some college or higher.

https://doi.org/10.1371/journal.pone.0248240.t006

Table 7 provides a summary of the spontaneous and probed HF impacts and consequences from the caregiver perspective. A total of 33 day-to-day HF impacts were elicited from caregivers. The top impacts (greater than 20% endorsement) were changes/reductions in social/family interactions (n = 13; 50.0%); being stressed, worried, and fearful (n = 12; 46.2%) and having to monitor their “patience” level (n = 11; 42.3%). Eleven caregivers (42.3%) mentioned that they used vacation time for caregiving, made less money if they called off work, transitioned to part-time work, or retired early to meet the responsibilities of caring for their patient. Caregivers often expressed that they had difficulty performing work or job responsibilities or regular daily activities (n = 11; 42.3% negative/suboptimal changes in recreational activities and hobbies (n = 10; 38.5%); being frustrated (n = 9; 34.6%); physical consequences of being tired or exhausted (n = 8; 30.8%); sacrificing sleep, having insomnia, or trouble sleeping (n = 8; 30.8%); depression (n = 7; 26.9%); and feeling one is being taken for granted or feeling unappreciated (n = 6; 24.0%). Two caregivers (7.7%) expressed that their caregivee’s had “slowed down” because of HF, often needing frequent rests and not being as agile as they used to be with respect to their physical abilities. Three caregivers (18.8%) expressed that their patient often fell off the furniture because of weakness they experience.

[003–202]: “Because he used to walk around the house with no issues . Now he is a little bit slow and he is feeling vulnerable in case he is at home at the house by himself , and he may have a fall and , uh , things like that . ”

https://doi.org/10.1371/journal.pone.0248240.t007

Below are some illustrative quotes that reflect caregiver impacts.

[003–04 –participant name 1] Um , I become more busy . It’s like having a child , pretty much . I have to look at him all the time , look after him all the time . So especially at night when he is at sleep , because he can’t go to the bathroom , so I have to check on him in the middle of the night to make sure that has been taken care of . [003–04 –participant name 4] The physical challenge is definitely , you know , because my parents live 110 miles away from me . So , you know , I get five calls a day about stuff that’s–in the scope of things , is pretty insignificant , but for them it’s like major , so I’ve had to literally–and I work in sales . I have to drop my career to tend to them , you know , on a moment’s notice . That’s really frustrating . …It’s a challenge because , you know , I have a family myself…– it’s almost like putting your finger in a dam , you know , just try to cover as many holes as you can and hope it doesn’t flood . [002–211] Tired , crabby , aggravated , giving up your social life on weekends . [002–207] Everywhere I turn it’s like another problem . [002–208] He doesn’t like me having ‘me’ time . I like to read . I’ll pull out a book , and he’s irritated . Why are you not talking to me? Why do you want to always read? Well , because you’re boring . [002–208] So it’s like my freedom is—is gone . So I’m always washing his clothes [due to urination accidents] , which is a pain . Um , I—I retired and I was hoping to do some traveling . So I guess I’m sad because I thought my retirement would be different , um , so as a result , I’m not having time for myself to do my walking , bicycle riding . In the summer I like to go bicycle riding, and then he gets sad because I’m leaving him and I’m going on my bike . I have little time for myself and my interests , I’m becoming more like a boring person , myself , um , um , and I used to be really , uh , outgoing and , um , kind of free spirit . Well , that’s not so much anymore , so I think my personality has changed . 002-207e: Well , the—the problem would be I’d have to leave the house , and then he’d want to know why aren’t you here with me , where are you going? 002–201: It’s very discouraging . Um , I’m always on edge . It’s hard to sleep . You’re always wondering , you know , if something’s going to happen . You know , you’re--it’s just , um , very , very , um , mentally and physically draining . 002–204: I’m a pretty positive person . I’m always laughing and smiling . It’s always an act . It’s always an act , because if I show people that I’m sad and depressed , it’s not going to help me . And it’s not going to help my husband . 002–206: I can’t make any plans , can’t plan ahead . Um , can’t leave him unattended , can’t leave him alone . That’s a given . Um , and even when I do , it’s [laughter] why aren’t you answering your phone , um , you know . You know , it’s--I put exhausting . It’s overwhelming…no time for myself . 002–203: The constant worrying , because almost every time he goes to the doctor it’s a new problem or something getting worse . Um , feeling tired constantly , um , loss of friends and no time for myself , and kind of a thankless job . 002–201: Well , taken for granted . God , you know , you’re here but nobody really appreciates it , because they--and then , of course , you know , they take out their anger and frustration on you . Um , so it’s very stressful , can’t make plans . 004–205: It’s the time . I cannot leave the house for any length of time without getting 100 phones calls . Um , the financial cost of having someone come in so that I can get a few hours , that costs . Um , he also has -- my father also has constant fears . And the complaints , he just--it--it causes a tremendous amount of stress , which translates into my job , and then I have to call out . It’s a lot . 004–207: I’m an anxious mess . Um , I’ve lost weight . I don’t sleep well anymore . Um , definitely get bouts of depression , and , um , anxiety

Living with and managing HF is a “shared experience” [ 14 ] and is demanding and arduous “work” [ 16 , 24 ] for patients and their caregivers. The HF journey adversely impacts patient and caregiver physical, mental, and social well-being and can bring about fear, uncertainty, depression, anxiety, and isolation. Understanding and addressing the totality of these experiences is a first step to improving patients’ and caregivers’ symptom ramifications.

This qualitative study confirmed previous research about the cardinal HF symptoms from the patient perspective and their daily impacts on patients with HF. These HF cardinal symptoms (from the patient perspective) were shortness of breath, tiredness and fatigue, edema, and difficulty sleeping [ 4 , 26 – 37 ]. Because the physical symptoms of HF can be so debilitating and incapacitating, several patient-preference studies have shown that HF patients value symptom stabilization or improvement (especially with respect to dyspnea, fatigue, and physical functioning) over outcomes such as hospitalization and increased risk of mortality [ 8 , 9 , 38 – 40 ]. In a qualitative, focus group study, Kraai and colleagues [ 41 ] reported that decreased symptoms, physical functioning, prevention of hospital readmissions, and living a normal life were the HF treatment goals most important to patients; none of the participants mentioned improved survival as a treatment goal. This research also corroborated the mental-health sequelae associated with HF reported by others including depression [ 5 , 7 , 29 , 32 , 34 , 42 , 43 ] and anxiety [ 29 , 33 , 34 ]. Patients often struggle with their new identity as a person with HF as well as its barriers on daily and normal activities that were once done without forethought and planning.

The findings of the current qualitative study further support the results of other studies demonstrating that the frequency and severity of HF-related symptoms (i.e., shortness of breath, fatigue, edema, etc.) impact physical, emotional and social functioning and well-being and results in significantly impaired HRQoL [ 4 , 28 , 44 , 45 ]. This qualitative research with 64 patients and 26 caregivers provides contemporary information on these impacts based on the perspective of the patients themselves and helps to provide a more real-life interpretation of these impacts of symptoms on functioning and well-being.

This qualitative research poignantly described the lived experiences of being a caregiver of patients with HF. Caregivers play a key and meaningful role in their caregivee’s HF self-care and HF health outcomes [ 20 ]. However, most of the caregivers interviewed in this study often felt they were on their own, left to their own devices, and lacked support and training for their new roles. Many of the caregivers interviewed in this study had to make significant changes to their daily life and routine including early retirement or reduced employment hours. Many also reported a significant amount of stress, and often social and emotional isolation, associated with caregiving for a patient with HF. Caregivers often had to assume additional daily roles and responsibilities due to their caregivee’s functional and psychosocial limitations. Many caregivers experienced caregiver “overload” and experienced their own recurring problems with fragile emotional and physical health, excessive stress, and problems with sleep. Intermittent periods of resentment and feeling unappreciated/taken for granted (e.g., being a forced volunteer [ 13 ] and an unsung hero [ 17 ]) were common among the caregivers studied herein.

This study provides evidence of patient and caregiver unmet needs in HF which are poorly understood by clinicians and vastly underserved by the healthcare system. These unmet needs require interventions that not only meet the diverse cultural needs of patients and their caregivers but also incorporates individual preferences for optimizing health outcomes that mean the most to patients and caregivers.

Limitations

This qualitative study has several limitations. First, the mean duration of living with HF was 8.9 years. By the virtue of surviving this time, these patients may have generally had the opportunity to find a new equilibrium with their disease and its impact on their caregivers. Thus, these findings may not be extended to patients living with HF for fewer years. Next, small sample sizes—which can limit generalizability and external validity—are often a characteristic of qualitative research as was the case in this study. However, our sample of 64 patients and 26 caregivers was considerably larger than that of past research. The sample of interviewed patients and caregivers was fairly well educated, relatively young, underrepresented participants from Hispanic origin and resided in metropolitan cities It is unknown whether the burden and impacts reported herein would have been exacerbated or attenuated among more vulnerable HF patients and their caregivers. The key phenotypes of heart failure (i.e., HF with preserved vs. reduced ejection fraction) were not distinguished in sampling. Our sample of patients and caregivers were not paired or matched as was the case with past research. No qualitative subgroup analyses were conducted (e.g., by gender or age). Finally, 56.0% of the patients self-reported NYHA class II, 30.0% self-reported class III, and 13.0% self-reported class IV. It is unknown if the symptoms and impacts revealed herein would have been intensified if more symptomatic patients and their caregivers were sampled.

In conclusion, living with HF is a shared—and often demanding—journey between patients and their caregivers. Patients experience many distressing and burdensome HF symptoms and feel they have a detrimental and deleterious impact on their daily functioning and well-being. Many caregivers are overloaded and stressed and suffer from harmful, negative impacts on their physical and emotional health. The direct costs of HF only take into consideration objective metrics such as healthcare utilization and expenditures. Even measures of indirect costs, while slightly more patient- and caregiver-centered, do not account for or incorporate the distressing and disruptive deficits in functioning and well-being that patients and caregivers experience. As shown by this and other research, the magnitude of patient and caregiver unmet need is palpable. More systematic research is needed to better characterize and understand unmet need at the patient, caregiver, and societal level. We advocate for making HF a much higher priority—perhaps akin to the oncology patient-centered medical homes—with quality metrics and policy changes that can help ameliorate the daily suffering and broad societal impact that is currently vastly underestimated and undertreated.

Supporting information

S1 appendix..

https://doi.org/10.1371/journal.pone.0248240.s001

• 1. National Center for Biotechnology Information (NCBI), US National Library of Medicine. Heart Failure 2014 [cited 2017 July 26]. Available from: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0063056/ .
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• Published: 26 September 2016

The implications of living with heart failure; the impact on everyday life, family support, co-morbidities and access to healthcare: a secondary qualitative analysis

• Mirella Fry 1 ,
• Sarah McLachlan 2 ,
• Sarah Purdy 3 ,
• Tom Sanders 4 ,
• Umesh T. Kadam 5 , 6 &
• Carolyn A. Chew-Graham 5  

BMC Family Practice volume  17 , Article number:  139 ( 2016 ) Cite this article

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The aim of this study was to use secondary analysis to interrogate a qualitative data set to explore the experiences of patients living with heart failure.

The data-set comprised interviews with 11 patients who had participated in an ethnographic study of heart failure focusing on unplanned hospital admissions. Following an initial review of the literature, a framework was developed with which to interrogate the data-set. This was modified in light of analysis of the first two interviews, to focus on the rich data around patients’ perceptions of living with heart failure, managing co-morbidities, accessing healthcare and the role of their family and friends, during their illness journey.

Respondents described how the symptoms of heart failure impacted on their daily lives and how disruption of routine activity due to their symptoms caused them to seek medical care. Respondents disclosed the difficulties of living with other illnesses, in addition to their heart failure, particularly managing multiple and complex medication regimes and negotiating multiple appointments; all expressed a desire to return to their pre-morbid, more independent lives. Many respondents described uncertainty around diagnosis and delays in communication from their healthcare providers. The importance of family support was emphasised, but respondents worried about burdening relatives with their illness.

Living with heart failure causes disruption to the lives of sufferers. Facilitation of access to healthcare, through good communication between services and having a strong support network of both family and clinicians can reduce the impact of heart failure on the lives of the patient and those around them.

Peer Review reports

A chronic illness, by definition, is a disease which persists for a long period of time and can cause continuous or episodic periods of incapacity [ 1 ]. Bury 1982 describes the effects of chronic illness as ‘biographical disruption’ to everyday life, and not only disruption to the individual suffering with the illness, but their families and wider social network [ 2 ]. Patients and their families may seek out information, support, and the most effective strategies to manage their symptoms, in the effort to minimise potential future disruption [ 3 ].

Heart failure is prevalent in the UK [ 4 ]; common symptoms include breathlessness, peripheral oedema and fatigue, all of which interfere with daily life [ 5 ]. Patients typically have multiple chronic co-morbidities, each of which may have a complex treatment regime [ 6 ]. Self-management of multiple chronic illnesses, educating patients to monitor their own health and being able to recognise illness severity are current features of healthcare policy [ 7 ].

Symptom unpredictability has been reported to leave patients feeling helpless and completely dependent on those around them, leading to a lack of control of the illness and an increased burden on family and the healthcare system [ 8 ]. Responsibility for care may shift from the patient to their spouse or immediate family. In these circumstances the patient may adopt the ‘sick role’, relying on their family for support both with their illness and previous responsibilities [ 9 ]. It has been reported [ 10 ] that in patients with greater levels of family support, confidence between members is increased, and family ties strengthened, in times of need such as ill-health. Therefore, congruent beliefs about the illness are important in order to achieve successful family functioning and to enhance patient well-being [ 10 ].

Previous studies exploring heart failure and patients’ quality of life suggest that balancing treatment regimens of multiple co-morbidities and the additional symptoms from co-morbidities could be extremely difficult for patients [ 5 , 11 ]. Challenges for patients managing multiple illnesses include; lack of care co-ordination, a greater need for support and more time needed to develop techniques to manage multiple illnesses [ 9 ]. Patients’ understanding of heart failure and how to manage has been reported as poor, leading to a cycle of hospital (re) admissions, which is not only disruptive for the patient but also places significant pressure on secondary care and increases healthcare cost [ 5 ].

There appears to be little consideration to the interaction between different health conditions by healthcare professionals. However, patients have been reported to manage their multiple illnesses by active weighing up of possible treatment options across their different health conditions [ 11 , 12 ]. The degree of agreement (or otherwise) in prioritising multiple conditions between the patient and clinician and between different clinicians and the patient, can affect subsequent self-management, such as treatment adherence and future therapeutic relationships [ 8 ].

The relationship between a patient and their doctor is the foundation for effective management of chronic illness [ 13 , 14 ]. An effective doctor-patient relationship is founded on high quality communication, which could be defined as the promotion of information gathering, agreement on therapeutic options and patient support [ 15 ]. Effective organisation within the healthcare system can provide continuity within clinical relationships [ 16 ]. Conversely, poor communication can result in patient uncertainty, confusion and worry, reducing a patient’s quality of life and ability to recover from illness. In vulnerable patients the doctor-patient relationship is important as patients may experience increased dependence on the doctor [ 12 , 17 ]. Effective communication can ensure that doctors are aware of the patients’ expectations, help to regulate their emotions and facilitate the understanding of information, which will ultimately lead to greater patient satisfaction [ 18 ]. Clinician and nurse availability can give patients a sense of security, as the patient understands that time and effort has been invested to accommodate them and provide information or reassurance [ 19 ].

This paper focuses on the secondary analysis of data collected from HoldFAST, a multicentre study including Bristol, Oxford and Keele Universities, which was funded by the National Institute for Health Research. The aim of collecting qualitative data from these participants was to gain an in-depth insight into the pathways towards, and reasons for, unplanned hospital admissions in patients with heart failure. The HoldFAST study aimed to explore patients’ experiences from multiple standpoints using ethnographic methods, combining observations, interviews and documentary data sources [ 20 ]. This paper reports a secondary analysis which focused on patients’ perspectives of living with and managing heart failure and the impact of the management of multiple illnesses, the importance of the doctor-patient relationship, and the role of family and friends, illuminating areas of heart failure care and patient experience that have been insufficiently explored in the previous literature.

This study involved secondary analysis of a data-set collected as part of a wider multi-centre investigation, to gain an in-depth insight into the pathways towards, and reasons for, unplanned hospital admissions in patients with heart failure. [ 20 ] Primary analysis of the whole data-set had already been conducted, [ 20 ] but the data-set comprising patient interviews had not been analysed independently.

For the HoldFAST study, a semi-structured topic guide had been developed by the research team, which allowed respondents to express their experiences of having heart failure along different points in the clinical pathway using a technique referred to as a ‘patient-led ethnography’, which captures views and experiences during important or critical episodes during the patient’s illness journey. Each interview was carried out within the participants’ homes, digitally recorded and transcribed for thematic analysis by the primary researchers. However, shorter ‘debrief’ discussions were held with patients during ‘critical moments’ such as at clinic appointments, GP visits, conversations on the way to or from hospital. The lead researcher (SMc) kept in regular contact with patients who were asked to notify the research team prior to any planned clinic appointments or ‘eventful’ illness episodes that they experienced in order to trigger a visit or telephone discussion by the researcher. This approach provided insights into patients’ naturally evolving illness experiences related to their heart failure journey, and enabled the researchers to record events as they happened, or shortly afterwards. This technique is different from traditional single interviews, as it helped to capture an evolving storyline in the patients’ lives across a period of up to 6 months, to offer a deeper insight into their daily and weekly illness experiences and contacts with health services, particularly around hospital admission.

Ethical approval for the HoldFAST study was granted by NRES Committee South West - Frenchay, Bristol, and local approvals were obtained from Staffordshire Cluster of PCTs Research Management and Governance Office, and the Research & Development Department of University Hospital of North Staffordshire NHS Trust. The original consent form for the HoldFAST study asked the patient to consent to the use of data for further research within the research institutes.

The aim of this secondary analysis was to interrogate a single data-set (the ‘exit interviews) from an independent perspective, in order to critically evaluate the data with the aim of identifying key experiences and impact of living with heart failure and to gain a deeper understanding, and maximise use, of the data [ 21 , 22 ].

Data collection

The data comprised anonymised interview transcripts from the participants who had been identified and recruited for the HoldFAST study from a cardiology ward and specialist heart failure ambulatory clinic from three geographical locations within the UK; the Midlands, South Central and the South West of England. Patients with severe or difficult to manage heart failure from the Midlands and South Central and less ‘severe’ patients from a primary care centre from the South West of England were approached. They were given information leaflets and given at least 24 h to consider participating before being contacted by members of the research team. From those willing to participate ( N  = 31) written consent was taken. Nine patients (4 males and 5 females with a mean age = 71.2 years) and three female carers were recruited for the main study. Two patients and three carers also agreed to write diaries. Two other patients (1 male, 1 female) were not recruited into the main HoldFAST study but agreed to participate in single in-depth interviews. The data used for the current analysis were collected over an 11 month period during 2011–2013 and focused on one of the three research sites. The interviews presented in this paper were conducted at the end of the study, (we called these ‘exit interviews’) and encouraged patients to reflect on their illness journey since their diagnosis as well as on their experiences prior to diagnosis. The time of the exit interview from the initial invitation to participate in the study, was up to 6 months.

For this study, a secondary analysis of the interview data was conducted. This involved re-visiting the ten exit interviews and one set of field notes for an interview which wasn’t audio recorded. Following familiarisation with the data-set, each interview was read thoroughly by MF, SMc and CCG and the most prominent themes were identified and agreed. Linking this with the existing literature, a framework was developed by MF, SMc and CCG (see Table  1 ) to interrogate the data-set.

The initial framework included the questions:

As coding of the first two interview transcripts progressed using the framework (Table  1 ), and with discussion within the supervisory team, it became apparent there was rich data on the impact of symptoms on everyday life, and narrative about relationships with healthcare practitioners, access to care and the importance of patients’ support networks. Thus, the framework used was modified to include these themes (Table  2 ) and used interrogate the rest of data-set.

The revised framework included the questions:

High level codes, which highlighted repetitive themes, were identified within the transcripts, using the framework through an iterative method. Regular discussion with the supervisory team (CCG and SM) ensured agreement on coding and that any discrepancies were resolved. These themes had not been previously developed in the primary analysis (as this data-set had not been analysed on it’s own) and thus our analysis provided new insights from the same data set.

Using the above framework a number of prominent themes will be presented. These are: 1) the impact of illness on everyday life, 2) the role of family and friends in providing support, 3) relationships with health professionals, 4) managing multiple illnesses, and 5) access to healthcare. Each theme is presented and supported by illustrative data, followed by the participant’s unique identifier.

Table  3 gives details of the study participants. Data is given to illustrate each of the themes presented.

Implications of living with heart failure

Impact of illness on everyday life.

Participants described the impact on their lives of living with heart failure symptoms. They described how they experienced the symptoms of heart failure and their impact on everyday routines.

“ Because really you know it’s a condition and sometimes you know, the fluid, obviously my ankles hurt…” KP8

“ I’d taken the dog for a walk and something started and I thought whatever’s the matter this strange and then I said to my husband, I’m not well …” KP1

Some participants reported that they had not initially recognises their symptoms as being related to heart failure, and therefore were slow to act upon them at the start of their illness. Following receipt of a diagnosis, participants and their family described heart failure symptoms as a ‘disruption’ to their lives, which made them accept their illness and the limitations of their condition.

“ I remember I didn’t feel as hungry and everything seemed to be sticking you know kind of thing, you know, when you’ve sort of eaten too much…” KP1

Participants reported a wide range of symptoms, which individually may not self-evidently indicate heart failure. These symptoms limited the patients’ quality of life and impacted on them and their families. Educating patients with heart failure to recognise early symptoms will empower them with the knowledge to identify exacerbations and engage in preventative self-management.

Managing multiple illnesses

The majority of respondents stressed the impact of other health problems in combination with their heart failure. They described the difficulty of differentiating the symptoms they were experiencing as a result of the heart failure from their other co-morbidities or side-effects of medications.

“… but then you don’t know if it’s a cough…so you don’t know whether it’s a coldy-cough or whether it’s something to do with the medication.” KP6

“.. all the symptoms were there for heart failure but then the symptoms were there like me blood glucose dipped down to two point something so you know it was a mixture of…” KP3

The main impact of their other illnesses seemed to be the difficulty of managing complex medication regimes.

“ While he’s still messing with the gout medicine he thinks they’ll have to keep me on …”KP5

“… of course I was on tablets already for high blood pressure, which I’ve been on for years, and they changed all those”. KP7

Some respondents reported that they felt that other health conditions they had seemed to be de-prioritised during their treatment for heart failure. This sometimes affected respondents’ feelings towards other healthcare professionals, and they suggested that their co-morbidities were not given equal attention as their heart failure.

“ They were more concerned about the lungs to be honest with you than they were about the heart then…I suppose you go from one of them.” KP2

“ I was very worried because I thought well I knew I’d got high blood pressure but I thought if they take me off these tablets what will happen you know about my high blood pressure but he said ‘forget all about that, we’ll put you on these others’ which they did .” KP1

Respondents also discussed the difficulties in managing multiple appointments for their different conditions.

“ I think the 9 th of October that’s in my kidneys… Yeah it’s every about four months, six months, just depends what’s going on next week… I was too upset about this cancer to be honest but she thinks, er, I probably won’t get any treatment because I’m too poorly but I’ll have to wait to see what he says on Tuesday”. KP9

Many of the respondents had multiple illnesses; however they suggested that their heart failure was often prioritised by clinicians, who considered it as having a greater impact on morbidity and mortality.

The role of family and friends

All of the respondents interviewed discussed their feelings about having or not having a support network of family and/or friends during their illness and the impact this had on them emotionally.

“But my eldest lad, [name of KP10’s elder son], said you never saw yourself dad, you looked bloody terrible..... that was when they took me… to the accident and emergency” KP10

“If [name of KP7’s son] and [name of KP7’s son’s partner] hadn’t had been so good, you know, coming down. They’d come and clean through for me a few times er during that period ‘cause they got on top of me.” KP7

Some respondents reported family members who took a very proactive role in trying to help participants, either by contacting the health services on their behalf or suggesting decisions for the patient against other doctors’ recommendations.

“ I’ve got a very good friend whose husband is a medical consultant and I did speak to him because I was so concerned and he actually gave me a lot of advice of what to do and what to say to the GP if she didn’t do, erm, what he’d actually advised she should do. ” KP4

KP11s’ daughter repeatedly asked to see the doctor to seek out explanations-(KP11s’ field notes).

Only one respondent identified a lack of immediate family support, and she described a sense of worry and lack of confidence in managing her heart failure:

“ I hope to go shopping but I just feel that I need somebody with me where it’s never bothered me before…but I used to, you know never a care in the world really despite of all my problems.” KP1

In contrast, the other respondents with strong support networks of family and friends, appeared to accept their diagnosis of heart failure more quickly and described looking to get back to their normal everyday lives building on that support.

“I’m on top of it again now… I’ve taken charge of it all myself… They cut me lawns for me and that sort of thing, because doing the mowing now – that does kill me ....But as far as the house is concerned, and washing is concerned, I’m doing all me own” KP7

Family and friends were seen to be key to patients’ recovery.

Relationships with healthcare professionals

Respondents expressed a spectrum of opinions about the care they had received from their healthcare professionals. They showed appreciation for specialist doctors and specialist heart failure nurses, who were perceived to spend a greater amount of time providing information both to the participants and their families.

“ He’s marvellous… we thought that was really good, because if he spends time with everybody like that then it’s like the old-fashioned doctor, isn’t it really? Instead of just packing you off… ” KP6

“.. but they explained what was going on, which to me is good you know because they can explain things and I won’t worry” KP10

“He’s lovely, I always had a kiss and a hug when I go in and out the clinic… Well he’s looked after me for the last six years with Dr L so, er, we know one another” KP9

However, some respondents were less positive about primary care professionals. A number of respondents reported an apparent delay in diagnosis by their GP, which had negative effects on their relationship.

“ That was while the doctors were saying chest infections… so they weren’t spotting the fluid .” KP5

“ Oh it’s your asthma, here....he didn’t even examine me....it’s only when my legs started, my ankles started swelling and we insisted .” KP4

Those respondents, who expressed some negative feelings towards particular clinicians, described how they were wary about future encounters and the confidence the respondents had in those clinicians.

“ he said he wouldn’t go to the doctors because you felt that, you know, if they just give you another inhaler.” KP4

“ But I wasn’t my normal GP he just left it at that, I always wonder, mind you I don’t think it could have been avoided what happened. ” KP1

Respondents who reported consultations with clinicians who were not their registered primary care doctor, described negative feelings towards the doctor, and attributed any delay in receiving appropriate care to this doctor. Respondents who described such negative encounters with clinicians reported this as a barrier to seeking care in the future.

Access to healthcare

Respondents expressed a range of views about the care and support they received from the different healthcare professionals and about access to and interaction with the healthcare system.

Respondents described a lack of pro-active contact from the healthcare system, both from hospitals and primary care, regarding scheduling appointments and the next stages in their care pathway. These respondents described a degree of uncertainty what would happen next and whose responsibility it was to monitor and support them. They expressed uncertainty about whose responsibility it was to initiate communication, when hospitals or primary care failed to send information to the respondents as they had said they would.

“… oh dear could be 18 months ago something like that…I think the doctors must have sent me but I never heard anything from that at all so I don’t know”. KP1. This respondent also went on to say, “ the doctor’s surgery perhaps could have shown a bit more support but on the other hand perhaps I should have just rung and you know, so perhaps it’s up to me”.

“I went to see, er, Dr E, er, whose first words when I went into the appointment were ‘Why are you here?’ and I said, ‘I haven’t a clue because I don’t know who you are or what you do or anything’, and he said ‘No I don’t know who you are either’ ”. KP5

Other respondents, however, described certain healthcare professionals as being exceptionally efficient at facilitating direct access to themselves or other parts of the healthcare system quickly. In these instances, patients expressed appreciation for the effectiveness of that particular doctor or nurse, which led to anticipation of a positive future relationship between the healthcare professional and the patient.

“ ‘I remember the radiographer at the hospital said it would be ten days for the results’…sent it straight through....everything marvellous” KP6

Those respondents who felt that their concerns had been dismissed by particular clinicians, or that they had not been listened to reported a negative impact on the future relationship with those clinicians.

Summary of results

All participants described the symptoms of heart failure as a disruption to their everyday life and limited their ability to perform routine activities, which led to frustration and a significant loss of confidence, and ultimately caused patients to question their own identity and self-esteem.

Factors which can influence how heart failure may disrupt patients’ lives include the speed and efficiency of a diagnosis and treatment. Many respondents described initial misdiagnoses of their illness, which led to significant delays in the correct treatment being instituted. As a consequence of perceived delays in diagnosis, respondents reported losing confidence in their doctors’ abilities to provide the right care for them, which impacted on future help-seeking. Lack of communication between the healthcare system and the participants led to further confusion and concern.

The majority of respondents mentioned how their family and friends played a role in supporting the management of their illness. Where respondents had some medical expertise in the family, they reported agreeing with their families’ opinion over that of the doctors.

For the one respondent who didn’t have immediate family support, she reported a greater loss of confidence and contrasted her illness journey to that of her husband, where she perceived that had received more support and care. This respondent, along with the others, was interested in returning to ‘normal’ and regaining their independence; her lack of confidence, however, impacted on her ability to self-manage and self-monitor her symptoms.

Comparison with previous literature

The findings from this study support previous studies conducted on the patient’s experiences of living with heart failure. [ 23 ] In addition, our findings support Bury’s description of a ‘biographical disruption’, with symptoms and management leading to lives disrupted from their everyday ‘norm’ [ 2 , 24 ].

The challenge of managing multiple conditions was described, with patients responding to different exacerbations of their illnesses and prioritising the management of their conditions based on the effect each illness had on their daily lives, and individual clinicians being seen to prioritise the illness which they were expert in treating [ 8 ].

The results of this analysis highlight the importance of the doctor-patient relationship, with the findings consistent with those of other studies, as patients described a lack of trust or confidence in doctors that were not their ‘usual’ doctor [ 15 , 16 ]. As well as doctors ‘knowing’ their patients, the patients had a sense of security ‘knowing’ their doctors, demonstrating the importance of experience and trust between a doctor and their patient, since it provides a gateway to accessing healthcare. Respondents seemed to assign blame to the doctors who were not their ‘usual’ healthcare provider, if anything went wrong, or to contemplate if things would have been done differently if their ‘usual’ doctors had been involved instead.

Poor communication can impact on patient care and outcomes [ 25 ]. Respondents described receiving unclear directions about their care pathway and ongoing support from their diagnosing doctors, and were confused about whose responsibility it was to initiate communication between hospital and primary care.

All respondents were positive about the specialist heart failure nurses, who were perceived to have more time to dedicate to patients, for explaining their illness and providing support, which was greatly appreciated by the respondents. This additional time allowed for greater patient education on anticipatory care, which involved identifying symptoms that the participant should look out for, to indicate an exacerbation of their illness. Specialist nurses are thought to have greater opportunities to provide education and support to patients and are able to liaise with different clinicians coordinating care to participants with complex multiple co-morbidities [ 26 ]. The results from this study reinforce the need for specialist heart failure nurses in the continued management, education and support of patients.

The findings are consistent with previous qualitative studies reporting that who found that respondents described a sense of burden on those around them, but agreed that it would be worse if they were alone [ 5 ]. Some respondents described ‘trying to make the best of it’ and trying as best they could to get back to normality, with the help of their loved ones.

Secondary analysis of the HoldFast data has provided support for results from previous qualitative studies and has highlighted how the difficulties in communication between health professionals across sectors impact on the management of patients as a whole.

Strengths and limitations

The main strength of this study is that a secondary analysis of previously collected qualitative data was performed. This is ethically sound as secondary analysis offers the opportunity to utilise the rich data from the primary study, from another perspective, thus providing another voice to the perspectives of the participants, who invested considerable time and effort in participating [ 21 ].

The study has a number of limitations: only one set of interviews, the ‘exit interviews’, were analysed for this study, which may mean that upon analysis of the whole data set, patients’ perspectives may be reported slightly differently. This may also mean that the transferability of this data to the general population of heart failure patients may be limited. The sample size ( N  = 11) is also relatively small, although category saturation had been achieved in the larger data-set.

Implications for future practice

This study emphasises the importance of good communication between patients and their HCPs; respondents valued clinicians who took time to elicit their concerns, and recognised the burden of their symptoms and management. This study demonstrated that clinicians need to be more aware of patient co-morbidities and burden of treatment, and the increasing need to liaise with other clinicians to provide care for the whole patient, not just for individual conditions. In addition, further clinician education on recognising a diagnosis of heart failure and being able to confidently communicate this to the patient is required, both in primary and secondary care.

Conclusions

The results from this study highlight the importance of education both for current health professionals and aspiring medical students on the value of communication, with patients and other members of the multidisciplinary team. Specifically, lessons can be learned on how to manage patients with multiple co-morbidities and to communicate those management plans both with the other health professionals involved with their care and to the patient themselves. Effective communication can influence a patient’s overall perspective of their illness and to turn a diagnosis of heart failure from something that prompts ‘biographical disruption’ into something that a patient can accommodate.

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Acknowledgements

This paper presents independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR). The views expressed are those of the author(s) and not necessarily those of the NIHR, the NHS or the Department of Health.

TS was supported in the preparation/submission of this paper by the Translating Knowledge into Action Theme of the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Yorkshire and Humber (NIHR CLAHRC YH). http://www.clahrc-yh.nihr.ac.uk . (The views and opinions expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.)

CCG is part funded by the Collaboration for Leadership in Applied Health Research and Care, West Midlands.

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Authors’ contributions.

MF led the secondary analysis and drafted the manuscript. SMc conducted original interviews in the HoldFAST study, worked on the primary analysis of the HoldFAST data-set, supported MF in conducting the secondary analysis and commented on drafts of this manuscript. SP conceived of the study, was Chief Investigator on the HoldFAST study, and contributed to the writing of this manuscript. TS led design of the qualitative study, worked on primary analysis of the HoldFAST data and commented on drafts of this manuscript. UK commented on drafts of this manuscript. CC-G supported MF in conducting the secondary analysis and supported the writing of this manuscript. All authors read and approved the final manuscript.

Competing interests

The authors declare that they have no competing interests.

Ethics approval and consent to participate

Ethical approval for the HoldFAST study was granted by NRES Committee South West- Frenchay, Bristol, and local approvals were obtained from Staffordshire Cluster of PCTs Research Management and Governance Office, and the Research & Development Department of University Hospital of North Staffordshire NHS Trust.

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Mirella Fry

Department of Physiotherapy, Division of Health and social care Research, King’s College London, London, UK

Sarah McLachlan

University of Bristol, Faculty of Health Sciences, Senate House, Tyndall Avenue, Bristol, UK

Sarah Purdy

University of Sheffield, School of Health and Related Research (ScHARR), Section of Public Health, Regent Court, Regent Street, Sheffield, UK

Tom Sanders

Research Institute, Primary Care and Health Sciences, Keele University, Keele, UK

Umesh T. Kadam & Carolyn A. Chew-Graham

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Fry, M., McLachlan, S., Purdy, S. et al. The implications of living with heart failure; the impact on everyday life, family support, co-morbidities and access to healthcare: a secondary qualitative analysis. BMC Fam Pract 17 , 139 (2016). https://doi.org/10.1186/s12875-016-0537-5

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Published : 26 September 2016

DOI : https://doi.org/10.1186/s12875-016-0537-5

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87 Heart Failure Essay Topic Ideas & Examples

🏆 best heart failure topic ideas & essay examples, ✍️ heart failure essay topics for college, 🎓 simple & easy heart failure essay titles, 🔎 good research topics about heart failure.

• Left-Sided Heart Failure and Nursing Intervention Thus left-sided heart failure or left ventricular failure refers to a condition where the left part of the heart is unable to propel adequate oxygenated blood from the pulmonary transmission to the body through the […]
• Hypertension and Congestive Heart Failure In conclusion, the patient experiences a range of issues related to hypertension, which is likely to cause left-sided congestive heart failure since it is the most common in the population. We will write a custom essay specifically for you by our professional experts 808 writers online Learn More
• Heart Failure and Chronic Obstructive Pulmonary Disease Respiratory: The patient is diagnosed with COPD and continues to smoke up to two packs a day. Psychosocial: The patient is conscious and able to communicate with the staff, informing them of his state of […]
• Congestive Heart Failure Treatment Innovations The relevance of the problem of this disease for health care is conditioned by the prevalence of pathology and the high economic costs of its treatment.
• Preventing Heart Failure: Case Study In addition to the signs of heart failure, Mrs. The use of oxygen through nasal cannulas reduces the load on the heart, and it is rational.
• Importance of Dashboard in Heart Failure Preventing Thorough testing of the heart failure dashboard is essential to ensure its successful work and contribute to the reduction of the risk of hospitalization for heart failure.
• Analysis of Heart Failure: Diagnosis and Treatment The current paper examines the two types of HF – systolic and diastolic – and explains the differences between the varieties based on the case study.
• Video Consultations Between Patients and Clinicians in Diabetes, Cancer, and Heart Failure Services For example, during one of my interactions with the patient, I was asked whether the hospital had the policy to avoid face-to-face interaction during the pandemic with the help of video examinations.
• Hypertension and Risk of Heart Failure Therefore, it is essential to reduce the circulating volume with the help of diuretics, a low-sodium diet, and ACE inhibitors that block the activation of the RAAS.
• Impact of Cognitive Dysfunctions on Patients With Heart Failure Based on the statement, which has been the initial assumption, impaired cognitive functions correlate with a lack of participation in the treatment of heart failure. The frame in which the structural concepts of the research […]
• Heart Failure: Prevent Readmissions and Noncompliance With Chronic Management The Heart failure (HF) is a rising healthcare burden which is common among many admitted patients. The project will introduce preventive interventions and measures for HF.
• Congestive Heart Failure: Diagnosis and Treatment Congestive Heart Failure is a condition characterized by decreasing pumping capacity of the heart muscles of a person resulting in the congestion of the body.
• Heart Failure: Diagnosis and Pharmacologic Treatment In addition, due attention should be paid to effective strategies for the prevention of symptoms and treatment of concomitant diseases to improve the quality of life of patients with heart failure.
• The Different Types of Heart Failure Right-sided heart failure occurs when the right chamber of the heart has not enough power to pump blood to the lungs. The role of a nurse is to assess and educate a patient with heart […]
• Pathophysiology of Congestive Heart Failure Cardiac output and stroke volume is lowered due to vasoconstriction. It causes pressure overload, which leads to congestion.
• Congestive Heart Failure (CHF): Causes, Treatment and Prevention Congestive Heart Failure is a condition that occurs when the heart is unable to pump enough blood to meet the needs of the entire body.
• Health Issues of Heart Failure and Pediatric Diabetes As for the population, which is intended to participate in the research, I am convinced that there is the need to specify the patients who should be examined and monitored.
• Systolic and Diastolic Heart Failure Second, the high sinus rhythm indicates the man’s irregular heartbeat, which is the result of the emergence of the specified event, and it is referred to as cardiac arrhythmias.
• Chronic Obstructive Pulmonary Disease, Hypertension, and Heart Failure: The Case Study The most likely cause of the symptom is fluid accumulation and congestion in the pulmonary system due to the failed heart that reduces the kidneys’ perfusion, thus causing an increase in the production of renin.
• Prevention of Heart Failure Hospital Readmissions This paper describes on improving patient’s health literacy and providing specialized nursing care will prevent heart failure hospital readmissions.
• Readmission in Hypertension and Heart Failure Patients In research, the independent variables are presented by CHF interventions, mortality rates, and population size, whereas the dependent variable is the possible results of their use for people with PH.
• The Role of Education in the Treatment of Congestive Heart Failure Home treatment plan is critical for the treatment and management of congestive heart failure, which is experienced by Mr.P. Hence, comprehensive education is central to the treatment and management of the congestive heart failure in […]
• Hospital Readmission and Health Related Quality of Life in Patients With Heart Failure The article analyzes the treatment of patients and the bettering of care. And the third is the discharge itself and the plans that organize its carrying out.
• Chronic Heart Failure: Symptoms and Self-Management Finally, the other cause of CHF includes endocarditis or myocarditis, a condition that affects the heart valves or the muscles of the heart.
• Congestive Heart Failure – One of the Most Devastating Diseases Based on the guideline, the study will be focused on all aspects in the management of CHF. This is a very efficient theory in addressing nursing issues and more precisely the management of CHF.
• Home Health Care vs. Telemonitoring: Reducing Hospital Readmissions for Patients With Heart Failure In the United States, chronic heart failure is regarded as the number one cause of both the hospitalization and readmission of patients.
• Why the Elders Delay Responding to Heart Failure Symptoms The paper would discuss the reasons the elderly delay in responding to the symptoms of heart failure. It incorporates the history of the problem and seeks to use the current technology to solve the problem.
• Remote Care Costs for Congestive Heart Failure Various aspects of the article including the significance of the chosen problem, methods, and approaches, the reliability of results and the articles structure will be discussed and evaluated.
• Heart Failure: Prevention of the Disease Heart failure is now occurring in younger people and it is vital to make them cautious and have a healthy lifestyle to prevent the disease. The purpose of the leaflet is to draw people’s attention […]
• Congestive Heart Failure Etiology and Treatment Introduction Congestive heart failure (CHF) is a “progressive and debilitating disease” that is characterized by the congestion of body tissues (Nair & Peate, 2013, p. 237). Five percent of all medical admissions in hospitals are due to CHF. When an individual has this disease, his or her heart is not able to pump adequate blood […]
• Congestive Heart Failure Case Management Program A multidisciplinary strategy can be observed and applied to the outpatient’s supervision of the CHF conditions with the attempt to facilitate the functionality and to bring down the statistics of readmission of the CHF patients […]
• Breathlessness as an Element of Congestive or Chronic Heart Failure It was done in order to preserve the focus of the analysis on the factor of breathlessness itself. The article allows nurses and other medical specialists to gain a more in-depth understanding of breathlessness among […]
• The Syndrome of Chronic Heart Failure Chronic heart failure is a syndrome of various diseases of the cardiovascular system, leading to a decrease in the pumping function of the heart, chronic hyperactivation of neurohormonal systems.
• Measures to Avoid Re-Hospitalization of Patients With Congestive Heart Failure The idea of this project is to print out a supplement for the hospital’s 28-page guide in English and Spanish, which will have the essential recommendations and references to page numbers.
• Patient Education: Congestive Heart Failure These statistics suggest that hospitals have a substantial number of patients with CHF, and adjusting their practice and guidelines to suit the requirements of these patients is a necessity.
• Congestive Heart Failure and Coronary Artery Disease The overall result of this is the development of a clump of fatty material covered by a smooth muscle and fibrous tissue on the inside of the artery; this is known as an atherosclerotic plaque.
• Chronic Diseases: Heart Failure and Cancer The first article examines the role of genetic testing of molecular markers that determine the occurrence and progression of cancer in individuals. The article recommends oncology nurses to keep abreast of advances in genomics for […]
• Examining Pathophysiological Processes: Heart Failure & Chronic Kidney Disease Research conducted by Sahle concludes that the prevalence of HF in Australia is 1%-2%, which is similar to the statistics of the developed countries.
• Sampling Methods in Nursing Study on Heart Failure In systematic sampling, the arrangement of the people was done in the order of their increase in age and selection using the same order.
• Chronic Heart Failure: Symptoms, Diagnosis, and Treatment The diagnosis of the condition is made when signs and symptoms of congestion along with reduced tissue perfusion are documented in the presence of abnormal systolic or diastolic cardiac function. When it comes to the […]
• Heart Failure: Health and Physical Assessment DJ has a bad sleeping pattern, and no remitting factors were found. DJ has no medication intolerances.
• Heart Failure: Risk Factors and Treatment A comprehension of the risk aspects for heart failure is crucial for the generation of effective interventions that seek to prevent the occurrence of the condition.
• Heart Failure: Cardiology and Treatment The patients suffering from the left-sided heart failure persistently wake up several times at night because of the shortness of breath and gain weight significantly.
• Heart Failure Among Older Adult Males The purpose of this paper is to evaluate the problem of heart failure in adult males of 65 years of age and older, identify risk factors, pathophysiology, typical lab, and diagnostic health data, and goals […]
• What Influences Physical Activity in People With Heart Failure When the literature on related research was reviewed, it was noted that all of the previous research that had been done on the issue of physical activities for people with heart failure conditions had centered […]
• Congestive Heart Failure in Older Adults The research will narrow down to the readmission and admission rates for the period between January 2010 and March 2011 as well as the relevant data that will facilitate the development of a case management […]
• Resource Identification, Evaluation and Selection: Congestive Heart Failure Below is modification of search terms that were most resourceful Heart failure OR congestive heart failure Congestive heart failure AND re-admission Heart failure+ causes and symptoms Congestive heart failure AND edema Congestive heart failure AND […]
• Angiogenic Endothelial Cell Signaling in Cardiac Hypertrophy and Heart Failure
• Acute Myocardial Infarction Cause Heart Failure: Cardiomyocyte Death and Scar Formation
• Heart Failure in Alcohol Addicted People: Risks and Outcomes
• Acute Kidney Disease After Acute Decompensated Heart Failure
• Caregiving for Patients With Heart Failure: Impact on Patients
• Specialist Palliative Care to People With Heart Failure
• High Health Expenditure on Heart Failure in Different Countries
• Hypokalemia-Induced Arrhythmias and Heart Failure
• Comparison of Heart Failure Patients and Tumor Patients
• The Connection Between Aging and Congestive Heart Failure
• Current and Future Directions of Exercise Therapy for Muscle Atrophy Induced by Heart Failure
• The Duke Heart Failure Program Is a World Leader
• Multi-Biomarker Profiling and Recurrent Hospitalizations in Heart Failure
• Heart Failure Risk: How Race and Ethnicity Play a Role
• Sleep-Disordered Breathing During Congestive Heart Failure
• Causes Sudden Death in Heart Failure: Heart Attack
• Biomarkers for Heart Failure Prognosis: Proteins, Genetic Scores, and Non-coding RNAs
• Chronic Heart Failure in Heart Transplant Recipients: Presenting Features and Outcome
• Right-Sided Heart Failure: Severe Peripheral Pitting Edema
• Congestive Heart Failure in Older Adults
• Heart Failure Alert System Using Rfid Technology
• Heart Failure in Type 2 Diabetes: Current Perspectives on Screening, Diagnosis, and Management
• Influence of Socioeconomic Deprivation on Care and Treatment of Patients With Heart Failure
• Types of Drugs That Can Bring on Heart Failure
• The Difference Between Acute and Congestive Heart Failure
• Markers for Early Signs of Heart Failure Decompensation
• Alcoholic Cardiomyopathy: A Distinct Form of Congestive Heart Failure
• The Difference Between Left and Right Heart Failure
• A Process of Decision-Making by Caregivers of Family Members With Heart Failure
• Pediatric Congestive Heart Failure: Background, Etiology
• Immunity, Inflammation and Heart Failure: Their Role on Cardiac Function and Iron Status
• Supplemental Oxygen Helps Heart Failure: Reducing the Heart’s Workload
• How to Enjoy the Highest Quality of Life Possible With Congestive Heart Failure
• Cardiac and Vascular Remodeling in Heart Failure
• Cardioprotection and Thyroid Hormones in the Clinical Setting of Heart Failure
• First Gene Therapy for Heart Failure in Clinical Trials
• Cardiac Regeneration: New Insights Into the Frontier of Ischemic Heart Failure Therapy
• The Transition From Hypertension to Heart Failure
• Classification of Heart Failure in the Atherosclerosis Risk
• Approaches to Modeling the Mechanics of Human Heart Failure for Drug Discovery
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Heart Failure, Research Paper Example

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Introduction

Heart failure is a complex and very serious health concern that occurs when blood pumping is insufficient and is caused by weakening of the heart muscle for various reasons that impact its overall functionality (Mayo Clinic, 2015). In particular, the heart ventricles are weakened and are unable to pump blood effectively throughout the body; the condition may be characterized as congestive heart failure but may also be identified by shortness of breath or weakness (Mayo Clinic, 2015). Patients with heart failure must be properly diagnosed so that treatment will be properly managed for these patients and so that patients will respond to these treatments effectively.

Left Side: Causes

Left side heart failure is caused by a malfunction of the larger left ventricle, and when dysfunction occurs, this ventricle must work harder in order to pump blood effectively throughout the body (American Heart Association, 2015). Therefore, left side failure requires additional exertion and effort that may contribute to a variety of conditions and overall limitations on quality of life for these patients as the impact of this condition continues to expand in scope.

Manifestations

Left side heart failure is characterized in one of two ways: 1) systolic failure, under which the left ventricle is unable to contract at a normal level and pace and under which blood pumping is not forceful enough to cause adequate circulation; and 2) diastolic failure, under which the left ventricle is unable to relax at a normal level, particularly due to stiffness, and the heart is unable to fill back up with blood at the desired level during resting periods (American Heart Association, 2015).

Pharmacological Treatments

For patients with left side heart failure, it is important to establish an effective treatment plan that is based upon prior evidence and under which there has been prior success with patients who have received these treatments in the past. Common treatments for heart failure in general include the following: 1) hypertension medications to manage blood pressure; 2) surgery as required to open blocked arteries; 3) beta blockers that are used in patients as a means of preventing death; 4) diuretics in order to eliminate fluids that have built up in the tissues; 5) digitalis to increase heart beats and to also slow rhythms; and 6) digoxin as necessary to reduce the heart rate as warranted (The New York Times, 2015).

Right Side: Causes

The causes of right side heart failure are a failure of the left side to function normally, whereby an increased level of fluid pressure is transferred to the lungs and causes even greater damage to the right side of the heart, accompanied by the flow of blood back through the veins (The New York Times, 2015).

There are a number of manifestations of right side heart failure in patients, including an increased level of swelling in different areas, including the legs, abdomen, and ankles, among other areas, thereby creating a difficult set of conditions for patients that require further analysis and consideration during the diagnosis and treatment phases (The New York Times, 2015).

For patients with right side heart failure, it is likely that some of the same treatments that are used for patients with left side heart failure will be used, particularly as patients begin to experience difficult health challenges that have a direct impact on their quality of life. Therefore, diet, exercise, surgery as necessary, and pharmacological therapies that directly address the heart failure condition may have a positive impact on these patients and their quality of life and overall mortality.

American Heart Association (2015). Types of heart failure. Retrieved from http://www.heart.org/HEARTORG/Conditions/HeartFailure/AboutHeartFailure/Types-of-Heart-Failure_UCM_306323_Article.jsp#.VlKI9vmrTIU

Mayo Clinic (2015). Heart failure: causes. Retrieved from http://www.mayoclinic.org/diseases-conditions/heart-failure/basics/causes/con-20029801

The New York Times (2015). Left-sided heart failure. Retrieved from http://www.nytimes.com/health/guides/disease/left-sided-heart-failure/overview.html#Treatment

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New advance against a form of heart failure prevalent in men

University of Virginia School of Medicine researchers have discovered a gene on the Y chromosome that contributes to the greater incidence of heart failure in men.

Y chromosome loss in men occurs progressively throughout life and can be detected in approximately 40% of 70-year-old men. UVA's Kenneth Walsh, PhD, discovered in 2022 that this loss can contribute to heart muscle scarring and lead to deadly heart failure. (That finding was the first to directly link Y chromosome loss to a specific harm to men's health; Y chromosome loss is increasingly thought to play a role in diseases ranging from Alzheimer's to cancer.)

In an important follow-up finding, Walsh and his team have discovered how Y chromosome loss triggers changes in heart immune cells that make the cells more likely to cause scarring and heart failure.

Further, the researchers found they could reverse the harmful heart changes by giving lab mice a drug that targets the process of fibrosis that leads to the heart scarring, which could lead to a similar treatment for men.

"Our previous work identified that it was loss of the entire Y chromosome that contributed to heart disease in men," said Walsh, the director of UVA's Hematovascular Biology Center. "This new work identified a single gene on the Y chromosome that can account for the disease-promoting effects of Y chromosome loss."

About Y Chromosome Loss

Unlike women, who have two X chromosomes, men have an X and a Y. For a long time, the genes found on the Y chromosome were not thought to play important roles in disease. Sex hormones, scientists thought, explained the differences in certain diseases in men and women. But Walsh's groundbreaking work has helped change that perception. It also suggested an explanation for why heart failure is more common in men than women. (Cardiovascular disease, which includes heart failure, is the leading cause of death worldwide.)

Y chromosome loss occurs in only a small percentage of affected men's cells. This results in what is called "mosaicism," where genetically different cells occur within one individual. Researchers aren't entirely sure why this partial Y chromosome loss occurs, but predominantly it strikes elderly men and men who smoke compared to those who don't.

To better understand the effects of Y chromosome loss, Walsh and his team examined genes found on the Y chromosome to determine which might be important to heart scarring. One gene they looked at, Uty , helps control the operating instructions for immune cells called macrophages and monocytes, the scientists determined. When the Uty gene was disrupted, either individually or through Y chromosome loss, that triggered changes in the immune cells in lab mice. Suddenly, the macrophages were much more "pro-fibrotic," or prone to scarring. This accelerated heart failure as well, the scientists found.

"The identification of a single gene on the Y chromosome provides information about a new druggable target to treat fibrotic diseases," said Walsh, of UVA's Division of Cardiovascular Medicine and Robert M. Berne Cardiovascular Research Center.

Walsh and his team were able to prevent the harmful changes in the mice's macrophages by giving them a specially designed monoclonal antibody. This halted the harmful changes in the heart, suggesting the approach might, with further research, lead to a way to treat or avoid heart failure and other fibrotic diseases in men with Y chromosome loss.

"Currently, we are working with our clinician colleagues in the Division of Cardiovascular Medicine at UVA to assess whether loss of the Y chromosome in men is associated with greater scarring in the heart," Walsh said. "This research will provide new avenues for understanding the causes of heart disease."

Based on their findings, Walsh and his team believe that a small group of genes found on the Y chromosome may have big effects on a wide array of diseases. Their new work identifies mechanisms that may lead to this, and they are hopeful that further research will provide a much better understanding of unknown causes of sickness and death in men.

"This research further documents the utility of studying the genetics of mutations that are acquired after conception and accumulate throughout life," Walsh said. "These mutations appear to be as important to health and lifespan as the mutations that are inherited from one's parents. The study of these age-acquired mutations represents a new field of human genetics."

Findings Published

The researchers have published their findings in the scientific journal Nature Cardiovascular Research . The team consisted of Keita Horitani, Nicholas W. Chavkin, Yohei Arai, Ying Wang, Hayato Ogawa, Yoshimitsu Yura, Megan A. Evans, Jesse Cochran, Mark C. Thel, Ariel H. Polizio, Miho Sano, Emiri Miura-Yura, Yuka Arai, Heather Doviak, Arthur P. Arnold, Bradley D. Gelfand, Karen K. Hirschi, Soichi Sano and Walsh. The scientists have no financial interest in the work.

The research was supported by the National Institutes of Health, grants AG073249, HL142650 and HL152174; the National Aeronautics and Space Administration, grant 80NSSC21K0549; the UVA Medical Scientist Training Program, grant T32GM007267; the American Heart Association, grant 23CDA1054358; Grant-in-Aid for Research Activity Start-up grants 21K20879 and 22K08162; the Japanese Heart Failure Society; the Japanese Circulation Society; the Japan Cardiovascular Research Foundation; the SENSHIN Medical Research Foundation; the MSD Life Science Foundation; Novartis; the Kondou Kinen Medical Foundation; and the Bayer Scholarship for Cardiovascular Research.

• Heart Disease
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• Stroke Prevention
• Epigenetics
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Hot topics and trends in cardiovascular research

1 Department of Cardiovascular Sciences, KU Leuven, Campus Gasthuisberg O/N1 704, Herestraat 49, Leuven, Belgium

2 ECOOM, Department of Managerial Economics, Strategy and Innovation, KU Leuven, Naamsestraat 61, Leuven, Belgium

Wolfgang Glänzel

3 Department Science Policy & Scientometrics, Library of the Hungarian Academy of Sciences, Arany János u. 1, Budapest, Hungary

Karin R Sipido

Associated data.

Comprehensive data on research undertaken in cardiovascular medicine can inform the scientific community and can support policy building. We used the publication output from 2004 to 2013 and the 2014 references to these documents, to identify research topics and trends in the field of cardiovascular disease.

Methods and results

Text fragments were extracted from the titles and abstracts of 478 000 publications using natural language processing. Through machine-learning algorithms, these text fragments combined to identify specific topics across all publications. A second method, which included cross-references, assigned each publication document to a specific cluster. Experts named the topics and document clusters based on various outputs from these semi-automatic methods. We identified and labelled 175 cardiovascular topics and 20 large document clusters, with concordance between the approaches. Overarching, strongly growing topics in clinical and population sciences are evidence-based guidance for treatment, research on outcomes, prognosis, and risk factors. ‘Hot’ topics include novel treatments in valve disease and in coronary artery disease, and imaging. Basic research decreases its share over time but sees substantial growth of research on stem cells and tissue engineering, as well as in translational research. Inflammation, biomarkers, metabolic syndrome, obesity, and lipids are hot topics across population, clinical and basic research, supporting integration across the cardiovascular field.

Growth in clinical and population research emphasizes improving patient outcomes through novel treatments, risk stratification, and prevention. Translation and innovation redefine basic research in cardiovascular disease. Medical need, funding and publishing policies, and scientific opportunities are potential drivers for these evolutions.

Introduction

Current policies for public funding of health research increasingly focus on innovation, with a final goal to improve health outcomes. 1 To support policies, roadmaps are established, for example for diabetes 2 and respiratory 3 diseases. In the USA, the joint Academies developed a document to guide national policy in health 4 with a dedicated document for cardiovascular medicine 5 that includes general directions for research. In Europe, building a roadmap for cardiovascular research is one of the tasks of the ERA-CVD network. 6 Expert opinion guides the exercise but a macro and global-level overview of past cardiovascular research can enrich the debate and strengthen the basis for recommendations. The breadth of cardiovascular research is astounding, 7 with research undertaken across a variety of institutions and with each piece of research having its own scope/focus or topic. It is thus challenging to review and summarize all the research that has been undertaken.

Identifying all the relevant research is the first hurdle to overcome, then classifying or identifying topics of research is the next significant hurdle. Journal classification systems offer little assistance, as they are not granular enough to identify more specific topics within broader fields. Thesauri or medical dictionaries, such as PubMed or the International Classification of Diseases (ICD), do not offer an overview of time-dependent changes in topics or changing concepts.

Identifying key topics using semi-automatic approaches based on text analysis is an alternative solution that takes advantage of recent developments in high-level informatics. As this is not reliant on a predefined classification, it may result in different outcomes. Various methods use natural language processing (NLP) to extract topics or clusters from text. For example, the bibliometric community has compared the results when varying methods are applied to a set of astronomy publications, focusing on the importance having topic expert input throughout the process. 8 The recent CardioScape project analysed abstracts of 2476 research projects awarded 2010–12 as published by funding bodies. The authors assigned research project to topics, based on the abstract text, using a semi-automatic process that tested and trained the data to more quickly allocate abstracts to a topic than depending solely on expert review. They produced a detailed taxonomy or classification of cardiovascular research based on the list of topics of the European Society of Cardiology, creating a hierarchical list of over 600 topics. 9

Here, we aim to identify topics in published cardiovascular research and their evolution between 2004 and 2013, assessing whether they have appeared, disappeared, or changed over time. In a comprehensive approach, we use a combination of existing methods for text mining, network analysis, and clustering, and further develop these tools to handle a large dataset of >400 000 publications.

In our study, we use two different and complementary approaches. A first one detects topics across the collection of publications, counting number of documents, and relations between topics. A second one maps document networks into clusters with an identifiable subject of research. These approaches are described here in brief, with more detail provided in the Supplementary material online .

Data sources

The dataset includes the reference, abstract, address, and citation data for 478 006 cardiovascular publications from 2004 to 2013, including 2014 references to these documents, using an expert informed search strategy and references to core cardiovascular journals, as previously published. 7 The documents span across >5000 journals, and include cardiovascular publications in leading general journals in medical and life sciences ( Supplementary material online , Table S1 ). We obtained the data from Clarivate Analytics Web of Science Core Collection (WoS) through a custom data license held by ECOOM, KU Leuven.

Text pre-processing

We took all titles and abstracts of the above publications, and extracted the noun phrases (text fragments of various lengths) using the NLP framework developed at Stanford. 10 Supplementary material online , Figure S1 illustrates the subsequent data flow for the analysis.

Topic modelling

For this approach, we applied latent Dirichlet allocation (LDA) 11 to the above-mentioned text fragments from the titles and abstracts of all publications. This LDA approach groups the text fragments to identify topics and allocates documents to topics. In this approach, a document contributes to several topics. Of note, general terms or terms that are used frequently across the majority of documents are filtered out as part of the methodology, resulting in groups of highly specific text fragments and, consequently, topics, as illustrated in Supplementary material online , Figure S2 .

At least three cardiovascular experts (listed in the Acknowledgements section) named each topic based on a set of the top 40 text fragments representing a topic. Further rounds of cross-review validated and consolidated the naming process. A final review of all topics ensured naming consistency across the topics and allowed for additional expert-based classification as clinical, basic, or population research.

We then calculated the number of documents that contributed to a topic, using probability analysis in LDA. Furthermore, we calculated the co-occurrence of topics in the publications, and visualized the outcome of this network analysis using VOSViewer ( www.vosviewer.com ). 12

Document clustering

For this second approach, the dataset was reduced to two periods, and we analysed the cardiovascular publications from 2006 to 2008 and those from 2011 to 2013, separately. For each time period, we then calculated the similarities between documents based on the noun phrase text fragments from the titles and abstracts of all publications and based on the references in these publications, using adapted cosine calculations and a hybrid document clustering algorithm, as previously described. 13 We then applied the Louvain 14 community detection algorithm to identify clusters of similar documents. For this method, each document is only located in one cluster. Subsequently, we applied the DrL/OpenOrd algorithm 15 to map and visualize the documents and clusters. We used R 16 in a high-powered cloud-based parallelized computing environment for all operations.

We identified and described the core documents, 13 the most common text fragments, as well as, the most highly cited documents and the most productive authors in each cluster, to name the clusters. For each document cluster, we identified the most highly representative topics from the LDA topic model.

Evolution of cardiovascular topics—trends and ‘hot’ topics

We identified 175 topics, listed alphabetically in Supplementary material online , Table S2 . This list groups specific topics within areas such as atherosclerosis, coronary artery disease, arrhythmias, heart failure, and their evolution over time.

For a visual and comprehensive overview, we prepared a map of the topics and their interrelation, based on co-occurrence within publications using a network analysis ( Figure ​ Figure1 1 A ). This map identifies different categories of research: population (at the top, blue), clinical (left, green/yellow), and basic research (right, red). Large topics in each category define overarching interests such as Evidence-guided-treatment and Outcomes and prognosis in clinical research, and Epidemiology of CVD and risk factors in population research, topics that have seen large growth in numbers of publications since 2004 ( Figure ​ Figure1 1 B ). Cell signalling and gene transcription is a central topic for basic research, with modest growth ( Figure ​ Figure1 1 B ).

Main areas and organization of research focus. ( A ) Visual presentation of the topics in 2013 and how they relate to each other, based on how often the topics are included in the same publication. Each circle represents one topic and each group of topics is highlighted in a separate colour; the most similar documents and clusters are located closer to each other based on VOSviewer mapping. ( B ) Evolution of overarching topics.

More focused ‘hot’ topics that experienced a large growth in number of publications are presented in Figure  2 .

Topics with large growth. For population research, the eight topics that increased more than two-fold in volume are shown; for clinical research, 27 topics increased more than two-fold and 10 of these are presented; for basic research only two topics had more than a two-fold increase, and the top 8 growers are presented. Overarching topics are shown in Figure ​ Figure1 1 B .

In population research, risk factors with research on metabolic syndrome, lipids, diabetes, physical activity, and mental health are prominent. In clinical research, patient management after myocardial infarction (MI) and outside the hospital are leading topics, but the true ‘hot’ topic was aortic valve disease that saw a surge of interest, related to transaortic valve repair, starting 2008. Though still small in numbers, heart failure research and stem cells saw substantial growth. This last clinical topic complements the major hot topics in basic research, on stem cells and cardiac repair and tissue engineering. In basic research, increasing translational output in metabolic syndrome and diabetes use mostly mouse models. Focused topics are organelle studies on mitochondria and endoplasmic reticulum.

Table  1 complements the fast growing topics of Figure  2 with additional leading 2013 topics. Most of these also have grown since 2004, but two topics, even if large, seem to have lost momentum, i.e. longitudinal studies on blood pressure, and basic research in cardiac electrophysiology.

Large topics in 2013

PCOS, polycystic ovary syndrome.

Only four topics in clinical, and none in population research, saw a decrease, whereas seven topics in basic research saw a decline in output ( Figure ​ Figure3 3 A ). Across all topics, the growth in publication output, measured as the number of documents in 2013 divided by the number of documents in 2004, was significantly larger in clinical and population research topics than in basic research topics ( Figure ​ Figure3 3 B ).

Unequal growth of research output across categories. ( A ) Topics that saw a decrease of >5%, i.e. 4/102 clinical and 7/50 basic research topics. ( B ) Average growth in each category. Each dot presents a topic; the values are the fractional growth, i.e. the number of documents in 2013 divided by the number of documents in 2004. Kruskal–Wallis followed by Dunn’s test for multiple comparisons; *** P < 0.0001 basic vs. clinical and vs. population.

When considering the overall output and growth of publications across the categories of population, clinical and basic research, the data suggest that the share of basic research publications is declining.

Document clusters define large research areas and trends

The size of topics represents the activity within each of these—documents contribute to more than one topic. In a complementary approach, we examined how documents group together based on the similarity of their text and of their references, whereby each document can belong to one cluster only, effectively dividing the total publication output into different areas. The hybrid clustering algorithm was applied to two datasets, i.e. the publications from 2006 to 2008 and 2011 to 2013.

In each period, 10 large clusters emerged, accounting for >90% of all documents.

To identify trends, we compare the two periods and examine the evolution over time ( Figure  4 ). In the graph legends, emerging areas are marked by green triangle, decreasing ones with a red triangle. Risk scoring in the population and related patient management are the leading areas, growing over time (top position). In 2011–13, a large cluster emerges that relates to gene and stem-cell therapy, including research on inducible pluripotent stem cells. Documents within this cluster include research on ischaemic heart disease and arrhythmias. Haemodynamics and biomechanics are another emerging area that includes documents on atherosclerosis and vascular diseases such as aneurysms, but also heart failure and assist devices. Aortic valve disease is a newly defined area in 2011–13. Imaging also becomes very prominent as an area in its own right. Whereas in 2006–08, hypertension was a defined area, this is no longer identifiable in 2011–13.

Distribution of document clusters in 2006–08 and in 2011–13. ( A ) In 2006–08, the 10 largest clusters represent 93% of the total publication output in this period. ( B ) In 2011–13, the 10 largest clusters represent 92% of the total publication output in this period. The colour codes for similar clusters are maintained across the periods. However, some clusters are present in only one period. The clusters are arranged by size, reading clockwise from the top, and the legends arranged accordingly. Red triangles mark clusters that disappeared and green triangles emerging clusters.

For the last period, we also examined the structure and interrelation of clusters, using a graphical rendering, giving insight in the size, composition, and presence of subclusters ( Figure  5 ).

Document clusters’ map 2011–13. A visual presentation of documents in clusters and subclusters: the most similar documents and clusters are located closer to each other, based on the DrL two-dimensional mapping layout technique.

In this force-directed DrL graph layout, the documents and clusters are mapped to minimize the distance between the most similar documents and maximize the distance between non-linked documents. This produces a two-dimensional co-ordinate layout where the documents closest to each other share the most similarities since they share common text fragments and references. Conversely, documents and clusters on the edges of the graph have the least similarity to other documents or clusters.

Cluster 2 on gene and stem cells is dense and separate, yet touches and interacts with Cluster 5 [acute coronary syndrome (ACS) and MI]. Cluster 9 on imaging is spread out in subclusters at different locations, including one near Cluster 5 (ACS and MI), and one near Cluster 4 (heart failure). Cluster 8 (arrhythmias) is also split with one part closer to heart failure, another to anticoagulation and atrial fibrillation.

Further naming the subclusters is presently beyond reach, as it would require a lot of expert input and resources. However, linking the clusters and the topics adds granularity to the larger research areas and provides internal methodological validation of the cluster naming.

Table  2 presents the most highly associated topics in the ten largest document clusters in each period. Overall, agreement with the LDA topics is high and provides more detail on the research contained in the clusters. E.g., the cluster ‘Haemodynamics’ is now showing different areas of focus, i.e. in congenital disease, aortic, and valvular diseases; the topic ‘Arrhythmias’ is more populated with device research in the second time period compared to the first.

Cluster names and topics present within clusters

AF, atrial fibrillation; ANS, autonomic nervous system; BP, blood pressure; CABG, coronary artery bypass grafting; CRT, cardiac resynchronization therapy; CT, computed tomography; CV, cardiovascular; DES, drug-eluting stent; ECG, electrocardiogram; HF, heart failure; LV, left ventricular; NOAC, new oral anticoagulant; PTCI, percutaneous transluminal coronary intervention; RV, right ventricle; STEMI, ST elevated myocardial infarction.

The method for identification of topics in cardiovascular publication output allowed the visualization and evaluation of trends in cardiovascular research. Over a 10-year period significant shifts occur.

Identification of cardiovascular research topics through natural language processing

In cardiovascular research, topics are generally predefined in a taxonomy that can be hierarchical and/or matrix structured. The CardioScape project approach (see Introduction section) was well suited to its purpose of the analysis of 2476 project abstracts in a single time period and using an existing taxonomy has the advantage of recognizable areas of research. The bottom-up approach used here lent itself well to analysis of much larger numbers of documents and generated a topic list that represents the interests from the community during the period under study.

A recent study by the WHO working to identify cardiovascular disease research output from random sets of publications from PubMed required a significant amount of expert-based review of only a small proportion of the published articles. 17 The current approach was more comprehensive in coverage of the field, but despite reliance on advanced automated analysis, experts still had an important role in interpreting and linking concepts to validate the results.

In the current naming of topics and clusters, experts frequently used terms that connect to a classic hierarchical list in the field, including major diseases, and recognizing clinical, population, and basic discovery research. Nevertheless, the approach uncovered specific emerging areas of research such as transcatheter aortic valve implantation (TAVI), topics consistent with broad trends, such as risk stratification and evidence-based guidance, and innovation (gene and stem cell research). Some of these terms would not appear in a classic taxonomy and thus the NLP approach offers novel insights.

The present study was not attempting to classify all research but to capture and identify the most common and evolving topics over time in the cardiovascular field by using a comprehensive set of cardiovascular publications across some 5000 journals.

Emphasis on improving clinical care and risk assessment

The most represented and fast growing topics across the documents are evidence-based guidance for treatment and research on outcomes and prognosis. These result underscore the attention given to guidelines and evidence based medicine (EBM). 18–23 Part of this research is likely to represent the large number of clinical trials taking place in the cardiovascular field, 24 which over time have had a significant effect on the reduction of mortality from CVD due to establishing the effectiveness and safety of a number of drugs and medical interventions in cardiovascular disease. 25 The presence of policy related topics, such as the topics on quality of care and health economics likewise supports the focus on implementation research and a shift of focus from reducing acute mortality to care in chronic disease.

Growth of research on risk factors emphasizes the importance of preventative medicine, evident in both the topics analysis and the document cluster analysis. However, some specific blood pressure studies declined over time, perhaps reflecting the change in focus on the single risk factor of ‘blood pressure’ to a multivariable spectrum and newly identified risk factors. We have also previously shown that hypertension has moved more closely to clinical cardiovascular research over time. 26

Smaller topics illustrate crosstalk with non-cardiovascular diseases, because of shared risk factors or common methods used in research or occurrence of cardiovascular complications. The latter is particularly evident in two topics that focus on cardiovascular complications in pregnancy and in cancer.

Innovation and translation in clinical and basic science

Major diseases such as ischaemic heart disease and arrhythmias, remain present over time but shifts can be seen. There is for example, a larger focus on atrial fibrillation, in particular embolic risk, on novel treatments, such as stem cells in heart failure, and transcatheter aortic valve interventions as a dominant element within the topic of valvular heart disease. 19 Imaging is present in several topics but emerges as a cluster in its own right in the document analysis. Many of these changes are driven by technological innovation and translation.

Basic research as a whole saw its share decline, but with interesting shifts in content. Although the topic analysis and mapping identifies basic research topics as a category, there are complementarities across categories. Stem cell research, tissue engineering, and biomechanical factors saw rapid growth and are also present in clinical topics. This also applies to inflammation and diabetes. Animal models for disease are rapidly growing topics consistent with growth of translational research.

An analysis of the countries of authorship of the publications in the emerging clusters of discovery research shows that the USA leads in the number and share of publications (30%+), followed mostly by Germany, or the UK or Italy. However, for the large document cluster on genes and stem cells in 2011–13, the second most productive country is China, contributing 17.5% of the publications in this cluster (Supplementary material online, Figure S3 ).

Interestingly, inflammation, biomarkers, metabolic syndrome, obesity, and lipids are hot topics with growing research output in population, clinical and basic research, indicating integration and crosstalk across the spectrum of cardiovascular research.

Drivers of change

Technology and opportunity-driven scientific interest, but also strategic choices and funding policies are likely to influence trends in research. CardioScape studied public and charity funding in the years 2010–12 and describes major investments in clinical research. Yet the share of publication output globally for clinical research appears to be substantially larger than the share of funding for clinical research reported in CardioScape. This could be explained by clinical research funded by other sources, such as industry or local funding, which are not included in the CardioScape analysis. Also, the present data represent global output. Major research investments in China, and the emphasis on clinical research in the USA, can contribute to some of the global trends.

The slower growth in basic science could reflect a slower growth in investment. This can be absolute or relative towards the increasing costs of advanced research methodology. Another reason could be editorial pressure for more comprehensive papers that may reduce quantity to the benefit of rich content in individual papers.

Finally, growing translational research may blur the boundaries between basic and clinical research and lead to an apparent slower growth in discovery research.

Policy perspectives

Policy development is a forward looking exercise. In health research, medical needs identified by health data and expert opinion, are an important consideration. 27 Past research output helps to identify areas that may need more investment. Research funders also use input from society. 28 When assessing current priorities in cardiovascular research for the Dutch 28 and British 29 Heart Foundations we can see that research into heart failure and arrhythmias are common across their top priorities. Focus on healthy lifestyles is a top priority in the Dutch Heart Foundation as well as in the US vision and strategic agenda. 4 , 5 At the macro-level, the data presented here indicate that some of the main issues presented in these research agendas are actively pursued but others less so.

Study limitations

Limitations of studying research topics have been addressed in the bibliometric field. 8 The reliance of expert input is a limitation and potential source of bias that we tried to minimize by using mixed panels.

The current approach was not sufficiently granular to extract recent emerging topics that contain a limited number of documents. In addition, publication output is somewhat delayed vs. actual research and experts may be aware of ongoing research with still limited output. In this case, the method and dataset can be used to interrogate about specific developments (see Supplementary material online , Table S3 for data on micro-RNA and personalized medicine).

As the data set ends in 2013, very recent developments are not covered. This relates to the methodological complexity. Web of Science data including 2014 references were available mid-2015, the cardiovascular publications dataset was complete in 2016 and algorithms for analysis including re-iterative expert review required another 18 months. A similar time lag is seen in other studies that rely on data mining and processing. 9 Congress abstracts could be considered as a source to identify emerging topics but have several limitations. They are of a different nature than papers and the scope of a congress shapes content of selected abstracts. We provide a complementary survey of 3000 abstracts from the 2018 congress of the European Society of Cardiology, illustrating the strong presence of clinical research at this event, within the topics of Clusters 1 and 3–7 of Table  2 ( Supplementary material online , Figure S4 ). Two emerging topics were cardio-oncology and digital health, each representing however <25 abstracts.

In the present analysis, quality and impact of studies in a particular domain were not evaluated, though highly cited papers were part of the cluster identification. In their analysis of poorly cited papers covering 165 000 papers in 1997–2008, Ranasinghe et al . 30 noted the highest percentage of poorly cited papers in the clinical and population research category. Nevertheless, as they and others 31 have noted, citations are not the only parameter to assess impact, in particular in clinical medicine.

Conclusions

Identification of leading research topics and trends illustrates the emphasis on improving clinical medicine, and the growing interest in risk stratification and preventive medicine. Translation and innovation redefine cardiovascular research. Linking the present data with the insights of the professional community and of funders and society, may contribute to the building of a future research roadmap.

Supplementary Material

Ehz282_supplementary_data, acknowledgements.

The authors thank to the following experts for their review of the text fragments and input into the names of the topics: Dr Matthew Amoni, Dr Peter Haemers, Prof Sian Harding, Dr Frederik Helsen, Prof Gerd Heusch, Prof Tatiana Kuznetsova, Prof Tobias Op‘t Hof, Prof Frank Rademakers, Dr Sander Trenson, Dr Bert Vandenberk, and Dr Maarten Vanhaverbeke.

D.G. had a PhD Fellowship through KU Leuven.

Conflict of interest: K.R.S. is Past Editor-in-Chief of Cardiovascular Research (2013–17). W.G. is Editor-in-Chief of Scientometrics .