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Prevalence of Symptoms in a Community-Based Sample of Heart Failure Patients
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Journal of Pain and Symptom Management
Vol. 32 No. 3 September 2006
Original Article
Prevalence of Symptoms in a CommunityBased Sample of Heart Failure Patients Sarah Barnes, BA, PgDip, PhD, Merryn Gott, MA (Oxon), PhD, Sheila Payne, RGN, BA, PhD, Chris Parker, BSc, MSc, David Seamark, MA (Oxon), PhD, MBBS, Salah Gariballa, MBBA, MRCP, MD, FRCP, and Neil Small, BSc, MSW, PhD Sheffield Institute for Studies on Ageing (S.B., M.G., C.P., S.G.), and School of Nursing and Midwifery (S.P.), University of Sheffield, Sheffield; Institute of General Practice (D.S.), School of Postgraduate Medicine and Health Sciences, University of Exeter, Exeter; and School of Health Studies (N.S.), University of Bradford, Bradford, United Kingdom
Abstract This study explored the prevalence and burden of symptoms in a community-based sample of patients aged >60 with symptomatic heart failure. Five hundred forty-two patients were recruited from UK general practices. Participants completed the Kansas City Cardiomyopathy Questionnaire every 3 months for 2 years. Data are presented at baseline alongside findings from in-depth interviews with patients and focus groups with primary care professionals. Over half the participants experienced breathlessness and/or fatigue daily. Factors identified as predictive of symptom prevalence and burden were as follows: being female; being staged at New York Heart Association Class III or IV; having symptoms of depression; and having two or more comorbidities. Interviews identified other symptoms, including chest pain, nausea, sleep disruption, and confusion. Participants felt that symptoms restricted activities of daily living. Health professionals reported symptom control as being a concern of patients and identified their own educational needs in this area. Findings suggest that symptom prevalence and burden for this population is high. Primary care professionals should offer comprehensive assessment and treatment of symptoms. J Pain Symptom Manage 2006;32:208e216. Ó 2006 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Heart failure, symptoms, community, older people
Introduction This project was funded by the Department of Health, UK. Address reprint requests to: Sarah Barnes, PhD, Sheffield Institute for Studies on Ageing, University of Sheffield, Elmfield, Northumberland Road, Sheffield, S10 2TU, United Kingdom. E-mail: s.barnes@ sheffield.ac.uk Accepted for publication: April 21, 2006. Ó 2006 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
Heart failure is most common among older people, and while age-adjusted mortality rates are declining in most cardiovascular diseases, both prevalence and mortality in congestive heart failure remain high.1 The main signs and symptoms associated with the condition are breathlessness (dyspnea), fatigue, and edema.2,3 Studies have also identified other common symptoms, including palpitations, chest pain, memory loss, and sleeplessness.4,5 0885-3924/06/$esee front matter doi:10.1016/j.jpainsymman.2006.04.005
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Symptoms such as breathlessness and fatigue can limit the extent of daily physical activities, requiring careful planning to allow for slow performance and frequent stops.4 Depressive symptoms also predict greater mortality in heart failure patients, and negative mood is associated with exacerbated physical symptoms.6,7 The primary goals of heart failure management include reducing disease progression, minimizing symptom burden, and improving quality of life.8 Qualitative research has shown that providing patients with relevant information about their medication may reduce anxiety and improve patients’ ability to interpret or relieve symptoms.5,9 Patient education about symptom recognition and prompt reporting of symptom change may also contribute to the prevention of hospitalizations.10 Previous studies on heart failure symptoms have mainly been carried out in the United States, using retrospective data gathered from hospital records. They have concluded that older patients with heart failure experience symptoms for a relatively long time before hospitalization.10,11 Older people are more likely to attribute symptoms such as fatigue and sleeplessness to normal aging rather than heart failure. Treatment seeking is delayed until symptoms become acute and distressing.10 Very few studies have investigated the symptoms of heart failure patients in community settings. However, a small study by Walke et al.12 found that community-based patients in the United States with advanced chronic diseases did experience multiple symptoms. However, only 29% of their participants had heart failure, the others having chronic obstructive pulmonary disease or cancer. Knowledge of symptom prevalence and burden can help in the identification of patients’ needs in terms of symptom control and service provision, both at an individual level and for community health services more generally. This enables individual needs to be better met and services to be targeted at vulnerable groups. These potential benefits have been compromised by the little that is known about the symptoms experienced by older people with heart failure living in the community. This paper reports the findings of a large-scale study that fills a gap in current knowledge by identifying factors that are predictive of
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symptom prevalence and burden within this population. The study adds depth and context to the experience of both living with heart failure and providing community services for heart failure. It does this via qualitative findings presented from interviews with patients, and focus groups exploring symptom control in heart failure management from the perspective of primary care professionals.
Methods The study, which had both quantitative and qualitative components, was granted ethical approval by the Cardiff Multi-Centre Research Ethics Committee, and all participants gave written consent to participate. More detailed information about the methods used in this study and strategies to involve ill older people in research can be found in another publication.13
Sample Five hundred forty-two people aged 60 and over were recruited from 16 GP surgeries in four diverse areas of the UK: Bradford, Barnsley, East Devon, and West Hampshire. Patients were considered eligible for recruitment into the study if they were aged over 60, could speak English, did not have evidence of significant cognitive impairment, and had selfreported symptomatic heart failure (New York Heart Association [NYHA] Classification IIeIV).14 A pragmatic approach to recruiting patients with a clinical diagnosis of heart failure was adopted,13 and no attempt was made to distinguish between diastolic and systolic dysfunction. While all participants reported NYHA Class IIeIV at recruitment, by the time the baseline questionnaire was completed, 20 participants reported an improvement to NYHA Class I. This change reflects the illness trajectory of heart failure, and these participants were included in the study. Patients who were unwilling or unable to participate in the study were more likely to be female (46% of participants were female compared to 63% of nonparticipants; c2 ¼ 40.22, df ¼ 1, P < 0.001) and older (median age of participants ¼ 77, median age of nonparticipants ¼ 82; c2 ¼ 13.28, df ¼ 3, P ¼ 0.004) than participants.
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Measures Patient participants completed the following questionnaires every 3 months for 2 years: Kansas City Cardiomyopathy Questionnaire (KCCQ),15 SF-36,16 Geriatric Depression Scale (five-item) (GDS-5),17 NYHA classification,14 and a service use questionnaire. KCCQ is a self-administered, disease-specific, health status measure for patients with heart failure. It consists of 23 items that quantify the following clinically relevant domains: physical limitations, symptoms (frequency, severity, and recent change over time), self-efficacy, quality of life, and social limitation.15 Each scale is transformed to a score of 0e100 in which higher scores indicate better health. The KCCQ Total Symptom Score is derived from the domains of symptom prevalence and symptom burden, and measures the symptoms of breathlessness and fatigue and the presence of lower limb swelling due to edema (Appendix). The current paper draws upon questionnaire data collected at baseline (between August 2003 and April 2004), as well as semistructured interviews conducted with a subgroup of 40 participants who reported NYHA Classification III and IV, and nine focus group discussions held with staff from participating primary care practices (n ¼ 79).
Analyses The use of quantitative and qualitative data collection methods adds breadth and depth to the data generated.18 It is recognized that this form of triangulation can help ‘‘support a finding by showing that independent measures of it agree with it, or at least, do not contradict it’’ (p. 266).19
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by each researcher. An agreed coding frame was subsequently constructed, and the few discrepancies that arose were decided by consensus. Coding was grounded in the data rather than decided a priori, and the coding frame evolved during the coding process. One researcher then coded the remaining transcripts (SB). Following basic level coding, broader themes were identified and the interrelationships among these were explored. Statistical Methods. Factors predictive of symptom prevalence and burden were identified using multiple linear regression analysis. All the known characteristics of the patients were potential predictors: gender, baseline NYHA, evidence of depression, age group, socioeconomic status, and number of comorbidities. Age and number of comorbidities were entered categorically because they showed nonlinear effects. Socioeconomic class and NYHA score were dichotomized because of small numbers in some categories. The KCCQ Total Symptom Score was the outcome measure. Residual plots were used to check the model assumptions of linearity, normality, and constant variance and to examine the effect of outlying values. Individuals were excluded from the analysis if data on the Total Symptom Score or any of the predictor variables were missing. Because of the large sample size, effects too small to be of clinical interest could achieve statistical significance. The sample size used for the study was determined in relation to the planned longitudinal analyses of the main study.
Results Qualitative Analysis. Interviews and focus groups were taped (with the consent of participants) and transcribed verbatim. They were then checked by one researcher (SB), and any identifying features were removed. Transcripts were entered into the qualitative software package NUD*IST (Nonnumerical Unstructured Data Indexing Searching and Theorizing) to help manage the large quantity of data generated. Initially, all transcripts were read by two researchers (MG and SB) to ensure familiarity. One interview transcript and one focus group transcript were then coded
Sample Description Table 1 summarizes participant characteristics. As can be seen, 54% of participants were male and 39% were self-classified as being in NYHA Class III or IV. Eighty percent were aged >70 years and 39% were aged >80 years; 55% were married and 36% lived alone. Just under half of participants (47%) showed symptoms of depression.
Prevalence of Symptoms Breathlessness and fatigue were the most prevalent of the symptoms measured, with
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Table 1 Participant Characteristics (n ¼ 542) n (%) Gender Baseline NYHA Depression as measured by the GDS Age groups
Socioeconomic status Comorbidities
Marital status Household Outcome Measure KCCQ Total Symptom Score 0e100
Male Female Ia and IIa III and IV No symptoms of depression Symptoms of depression 60e64 65e69 70e74 75e79 80e84 85þ SE I and II SE III, IV, and V 0 and 1 2 3 4þ Married Widowed, divorced, single Living alone Living with others
293 249 329 211 287
(54) (46) (61) (39) (53)
254 (47) 45 63 117 104 125 88 186 356 231 161 92 58 297 245
(8) (12) (22) (19) (23) (16) (34) (66) (42) (30) (17) (11) (55) (45)
194 (36) 348 (64)
Median (Quartile 1, Quartile 3) 60 (42, 79)
n 542
a This includes 20 participants who were NYHA Stage I for reasons explained in the Methods section.
over half of participants experiencing each at least once a day (54% and 53%, respectively). Twenty-eight percent of participants had to sleep with three or more pillows or sitting up in a chair at least once a week because of shortness of breath. Lower limb swelling was the least prevalent symptom, although 34% of participants experienced it at least once a week (Table 2).
Symptom Burden Over half of participants reported being moderately to extremely bothered by breathlessness
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and fatigue (60% and 59%, respectively), while only 8% and 9% of participants were not bothered at all by these symptoms, respectively. Fifty-three percent of participants were not bothered by, or had not experienced, lower limb swelling in the last 2 weeks (Table 3). There was a significant association between frequency and burden for each symptom (fatigue: c2 ¼ 318.19, df ¼ 4, P < 0.001; breathlessness: c2 ¼ 411.07, df ¼ 4, P < 0.001; lower limb swelling: c2 ¼ 257.22, df ¼ 4, P < 0.001) (Table 4). For example, 63% of those experiencing fatigue daily had high symptom burden, 93% of those experiencing breathlessness weekly had moderate symptom burden, and 76% of those experiencing ankle swelling less than once a week had low symptom burden.
Factors Predictive of Symptom Prevalence and Symptom Burden at Baseline Table 5 shows the association between each potential predictor variable and the Total Symptom Score, adjusting for all other variables in the model. Lower scores on the KCCQ indicate higher symptom prevalence and burden. Results show that women had an estimated 7.2 point lower score on the KCCQ Total Symptom Score than men (95% confidence interval [CI] 4.0, 10.3). People reporting an NYHA Classification of III or IV at baseline had an estimated 20.5 point lower score on the Total Symptom Score than those reporting NYHA II (95% CI 17.1, 23.9). People reporting depression (as measured by the GDS-5) scored an estimated 12.9 points lower on the Total Symptom Score (95% CI 9.4, 116.3). People reporting four or more comorbidities had an estimated 12 point lower score on the Total Symptom Score than those with 0 or 1 (95% CI 6.5, 17.5). Age group and
Table 2 Prevalence of Symptoms Reported by Participants Breathlessness (n ¼ 540), n (%) Every morning Several times per day At least once per day Three or more times a week One to two times a week Less than once a week Never over the past 2 weeks
63 128 95 61 76 58 59
(12) (24) (18) (11) (14) (10) (11)
Fatigue (n ¼ 538), n (%) 77 105 104 64 68 65 55
(14) (20) (19) (12) (13) (12) (10)
Lower Limb Swelling (n ¼ 535), n (%) 75 (14) d d 57 (11) 47 (9) 60 (11) 296 (55)
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Table 3 Symptom Burden Reported by Participants Breathlessness (n ¼ 541), n (%) Extremely Quite a bit Moderately Slightly Not at all No symptom
31 152 141 148 42 27
(6) (28) (26) (27) (8) (5)
Fatigue (n ¼ 540), n (%) 42 160 113 153 48 24
(8) (30) (21) (28) (9) (4)
better, so whether it’s with lying down all night I just don’t know, but I just dread mornings really.’’ Female patient, age 85
Lower Limb Swelling (n ¼ 536), n (%) 24 57 72 96 94 193
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Other participants experiencing fatigue described a range of experiences: an inexplicable lack of energy, variability of the symptom, loss of independence, and in some cases, acceptance of the restrictions caused by the symptoms.
(5) (11) (13) (18) (17) (36)
‘‘What I don’t understand is . why on these days do I have it and I’m right lethargic I fall asleep. I can have a full day like that, but then I’m right as a bobbin day after.’’ Female patient, age 66
socioeconomic status were not significantly associated with the KCCQ Total Symptom Score. Qualitative Interview Data. The qualitative interview data supported the statistical findings that breathlessness and fatigue were the most common heart failure symptoms experienced by the participants. The main themes emerging from the reports of the heart failure symptoms were their effect on activities of daily living, restricted mobility, feelings of uselessness, and confusion over the cause of the symptoms. For example, the participant below describes how her morning routine has changed as a result of the fatigue caused by her heart failure:
‘‘I’m unsteady, you know, and I don’t feel confident . If I lived on the flat it would be better. I just walk round here and I’m really shattered. You know, it’s as much as I can do, I’m afraid that’s the worse part of my illness that I cannot get out and do what I want .’’ Female patient, age 85 Some of the participants reporting breathlessness experienced panic attacks, frustration, depression and, in some cases, uncertainty over the symptoms. For example, the participant below was unsure whether the breathlessness was related to a heart condition:
‘‘. the worse part I think is getting up in a morning. It takes me ages . I think it’s the tiredness that affects me most. I sit on the edge of the bed and I put my slippers on. Then I put one arm in my dressing gown and I’ve to rest before I can get the other arm in . and then I’ve to sit on the bed a bit while I trot off to the bathroom . I just brush my teeth, wash my hands and then I’ve to sit on the toilet seat to get my breath back to pull the curtains back in the bedroom. And then after I’ve pulled the curtains back then I’ve to sit again on the bed, anyway eventually I get down and I make a cup of tea and after I’ve had that cup of tea and been on my nebuliser I start feeling
‘‘. she read it out on her computer . heart failure and congestion of the lungs . I never know whether it’s my lungs or my heart. I mean I can’t say my heart races or anything like that . you know people, their heart begins to beat, there’s nothing like that with it, I don’t have any pain in it or anything. It’s just this breathlessness, I cannot get my breath .’’ Female patient, age 80 The main concern of participants experiencing symptoms of lower limb swelling was that the diuretic medication prescribed to ease the condition resulted in sleep disruption.
Table 4 Symptom Burden by Symptom Prevalence Breathlessness Symptom Burden High Moderate Low n (%).
Fatigue
Lower Limb Swelling
Daily
Weekly
Daily
Weekly
Daily
Weekly
177 (62) 109 (38) 0 (0)
6 (4) 127 (93) 4 (3)
0 (0) 51 (44) 65 (56)
181 (63) 103 (36) 2 (1)
18 (14) 105 (80) 8 (6)
2 (2) 56 (47) 62 (52)
38 (51) 29 (39) 8 (11)
34 (33) 61 (59) 9 (9)
8 (2) 77 (22) 268 (76)
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Table 5 Participant Characteristics and KCCQ Total Symptom Score Outcome Predictor Female Baseline NYHA Evidence of depression Socioeconomic Group IIIeV Age group (relative to <65 years) 65e69 70e74 75e79 80e84 85þ Comorbidities (relative to 0 and 1) 2 3 4þ
Coefficient (SE)
95% CI
P-value <0.001 <0.001 <0.001 0.200
7.2 20.5 12.9 2.2
(1.61) (1.73) (1.78) (1.69)
10.3, 4.0 23.9, 17.1 16.3, 9.4 5.5, 1.1
0.1 0.8 2.7 0.1 0.6
(3.52) (3.17) (3.22) (3.13) (3.31)
7.1, 7.0, 9.0, 6.3, 5.9,
0.849 6.8 5.4 3.6 6.0 7.1 <0.001 4.9 (1.90) 10.3 (2.30) 12.0 (2.79)
8.6, 1.1 14.9, 5.8 17.5, 6.5
‘‘. I were three weeks in hospital while they did all this because all me legs were swollen. I had fluid in me lungs you see, and I hate taking all these water tablets because . I have to get up five or six times at night to go to toilet you know with taking all these water tablets but it’s better than having swelling isn’t it? .’’ Female patient, age 88
As with the in-depth interviews, loss of independence and increased reliance on others for activities of daily living was thought to pose the most worry for patients. On a practical level, this involves restricted mobility in relation to breathlessness and sleep disruption and incontinence, because of the diuretic medication, in relation to lower limb swelling.
Other symptoms than those outlined in the KCCQ Total Symptom Score, but reported in the qualitative interviews, included chest pain, palpitations, dizziness, confusion, nausea, and loss of appetite. Strategies used by the participants to control the symptoms included using mobility aids like scooters or stair lifts, getting help with activities of daily living from family members, employing cleaners and gardeners to assist with housework and, as reported in the statistical data, sleeping propped up on three or more pillows to ease breathlessness.
‘‘They get very worried about ulcers. I think they just get the thought that they’re going to be more dependent on people . they can’t get their shoes and socks on.’’ Male GP, Focus Group 7
Focus Group Data. Many of the health care professionals reported symptom control as being a main concern of patients with heart failure and their families, with many describing the fear and panic experienced by patients when breathless. ‘‘. from a doctor’s point of view I think seeing someone with acute heart failure is the gasping for breath . that is quite frightening when the patients are aware they might come to that stage . or experiencing somebody else having those symptoms can be very distressing for the doctor and patient.’’ Male GP Registrar, Focus Group 2
Another point raised by the health care professionals was that, as treatment becomes less effective, patients have to learn to live with the symptoms, resulting in fear, helplessness, and depression. ‘‘As they see their symptoms gradually getting worse and treatment being increasingly less affective . so I think there is an element of distress to do with you know, so what can we do now? You know, where we are actually going.’’ Male GP, Focus Group 8 ‘‘. some of them seem to . go through periods when they can do more and periods when their symptoms seems to limit them more and their medication hasn’t changed very much or at all.’’ Male GP, Focus Group 3 In relation to educational needs, both the GPs and nurses felt that optimization of medical treatment to improve symptom control could be achieved by improving training in the latest drug therapies.
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‘‘ . we’re notoriously slow at putting into practice definite benefits that we’ve found by research to be of benefit . so probably if you look at our group of patients with end stage heart failure, you know, their medical treatment could be optimised a little bit better .’’ Male GP, Focus Group 2 ‘‘. it’s always good to have continuous updates on pharmacology of heart failure . because it’s often changing, so definitely in that area we get very little once we’re qualified on drugs.’’ Female, District Nurse, Focus Group 2
Discussion Previous research into the symptoms of heart failure has mainly relied on retrospective data gathered from hospital records.10,11,20 This study provides self-reported data from a large, community-based sample of older people with chronic heart failure, as well as perspectives from primary health care professionals. As reported in previous studies carried out among hospitalized patients,4,10,20 breathlessness and fatigue were both highly prevalent and highly burdensome among the participants in this study. However, 34% of this community-based sample experienced lower limb swelling once a week or more compared to 65% of hospitalized patients presenting with lower limb swelling in the study of Evangelista et al.11 and 44% in the study of Nordgren and Sorensen.21 The following factors were identified as being independently associated with high symptom prevalence and burden among heart failure patients aged over 60 years and living in the community: being female, showing symptoms of depression, having a higher NYHA score, and having two or more comorbidities. Increasing age and socioeconomic status were not associated with higher symptom prevalence and burden. There are few studies reporting on gender differences in symptom prevalence in heart failure within a community-based sample. However, studies of patients admitted to hospital with heart failure have found that women are more physically impaired than men,
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particularly in the areas of activities of daily living and social activities.22 Friedman23 also found that, although men and women had a similar number of comorbidities, women experienced more physical impairment at the time of hospitalization. This supports findings from the present study, which identified that being female was associated with a significantly lower KCCQ Total Symptom Score than being male, therefore indicating higher symptom prevalence. Almost half of the participants taking part in the study self-reported symptoms of depression, which was a significant predictor of symptom prevalence after adjusting for the other variables. This finding was reinforced by the data gathered from in-depth interviews in which themes emerged around feelings of uselessness and confusion. This is in line with other research that has suggested that heart failure presents a greater risk for depression than other heart conditions.6 The Rumsfield et al.24 U.S. study found that ‘‘after adjusting for baseline health status and over 20 patient variables, depressed patients were at risk for significant worsening of their heart failure symptoms .’’ (p. 1814). This highlights the importance of addressing depressive symptoms among community-based patients with heart failure. As expected, the self-reported NYHA classification significantly predicted symptom prevalence and burden, as it is directly assessing levels of breathlessness. The qualitative findings suggest that participants in the community experience a wide range of symptoms, including the following most commonly reported ones: breathlessness, fatigue, and lower limb swelling. Themes emerging from the in-depth interviews identified the effects on activities of daily living, restricted mobility, and feelings of uselessness and confusion. The health care professionals taking part in focus groups reported symptom control as the main concern of patients and their carers. This highlights how symptom burden can affect informal carers, as patients experience increased reliance on them as they lose independence. The primary care professionals also pointed out that treatment can become less effective over time. The problems in offering symptom relief can lead to depression, which in turn may exacerbate symptoms.
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Improvement of training in the latest drug therapies was put forward as an educational need for both the GPs and the nurses. Knowledge about the prevalence of heart failure symptoms at the end of life is particularly scarce. Nordgren and Sorensen’s21 study found that, in addition to breathlessness, fatigue, and lower limb swelling, patients experienced a wide range of other symptoms, such as pain, nausea, sleeplessness, palpitations, and loss of appetite. They found that symptoms at the end of life were similar to those of cancer, but while cancer patients have access to specialist palliative care, heart failure patients do not. However, their study was based on a small amount of retrospective data gathered from hospital records. The qualitative data gathered directly from participants in the present study support this research, as patients self-reported a similarly wide range of symptoms. This emphasizes the importance of holistic care provided by primary care teams within the community. Despite providing important new data, certain study limitations must be acknowledged. First, participation rates were relatively low, particularly among the very old, women, and those in the highest NYHA groups, reflecting the difficulties of trying to involve often very ill older people in research.13 The conclusions drawn must, therefore, be considered within the context of the underrepresentation of these groups within the sample. Second, while the KCCQ has been used in a number of large international studies25 and no evidence has been found of differences in performance between countries, a formal UK validation has not been undertaken.
Conclusion Findings from the study suggest that symptom prevalence and burden for older people with heart failure living in the community is high. This information can help clinicians and health care commissioners working with older people to identify those at risk of high symptom prevalence and burden and target interventions appropriately.26 Symptom control is one of the key goals of palliative care, and these findings would support a call for the
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increased provision of palliative care in heart failure.
References 1. Akosah KO, Moncher K, Schaper A, Havlik P, Devine S. Chronic heart failure in the community: missed diagnosis and missed opportunities. J Card Fail 2001;7(3):232e238. 2. British Heart Foundation. Available from: http:// www.bhf.org.uk/. Accessed December 2005. 3. Watson RDS, Gibbs CR, Lip GYH. ABC of heart failure, clinical features and complications. Br Med J 2000;320:236e239. 4. Mayou R, Blackwood R, Bryant B, Garnham J. Cardiac failure: symptoms and functional status. J Psychosom Res 1991;35(4/5):399e407. 5. Bennett SJ, Cordes DK, Westmoreland G, Castro R, Donnelly E. Self-care strategies for symptom management in patients with chronic heart failure. Nurs Res 2000;49(3):139e145. 6. Turvey CL, Schultz K, Arndt S, Wallace RB, Herzog R. Prevalence and correlates of depressive symptoms in a community sample of people suffering from heart failure. J Am Geriatr Soc 2004;50(12): 2003e2008. 7. Carels RA, Musher-Eizenman D, Cacciapaglia H, et al. Psychosocial functioning and physical symptoms in heart failure patients: a within-individual approach. J Psychosom Res 2002;56:95e101. 8. Lonn E, McKelvie R. Drug treatment in heart failure. Br Med J 2000;320:1188e1192. 9. Rogers A, Addington-Hall JM, McCoy ASM, et al. A qualitative study of chronic heart failure patients’ understanding of their symptoms and drug therapy. Eur J Heart Fail 2002;4(3):283e287. 10. Friedman M. Older adults’ symptoms and their duration before hospitalisation for heart failure. Heart Lung 1997;26(3):169e176. 11. Evangelista LS, Dracup K, Doering LV. Treatment-seeking delays in heart failure patients. J Heart Lung Transplant 2000;19(10):932e938. 12. Walke LM, Gallo WT, Tinetti ME, Fried TR. The burden of symptoms among community-dwelling older persons with advanced chronic disease. Arch Intern Med 2004;164(21):2321e2324. 13. Barnes S, Gott M, Payne SA, et al. Recruiting older people into a large community-based study of heart failure. Chronic Illness 2005;1:321e329. 14. Criteria Committee of the American Heart Association. Nomenclature and criteria for diagnosis of diseases of the heart and great vessels. Boston: Little, Brown Medical Division, 1994. 15. Green CP, Porter CB, Bresnahan DR, Spertus JA. Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new
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health status measure for heart failure. J Am Coll Cardiol 2000;35(5):1245e1255.
with end-stage heart failure. Eur J Cardiovasc Nurs 2003;2:213e217.
16. Ware JE. SF-36 health survey: Manual and interpretation guide. Boston: The Health Institute, New England Medical Center, 1993.
22. Riedinger MS, Dracup KA, Brecht M-L, Padilla G, Sarna L. Quality of life in patients with heart failure: do gender differences exist? Heart Lung 2001;30(2):105e116.
17. Hoyl MR, Alessi CA, Harker JO, et al. Development and testing of a five-item version of the Geriatric Depression Scale. J Am Geriatr Soc 1999;47(7): 873e878. 18. Begley CM. Using triangulation in nursing research. J Adv Nurs 1996;24(1):122e128. 19. Miles MB, Huberman AM. Qualitative data analysis, 2nd ed. Thousand Oaks, CA: Sage Publications, 1994. 20. Ahmed A, Allman RM, Aronow WS, DeLong JF. Diagnosis of heart failure in older adults: predictive value of dyspnea at rest. Arch Gerontol Geriatr 2004;38:297e307. 21. Nordgren L, Sorensen S. Symptoms experienced in the last six months of life in patients
23. Friedman MM. Gender differences in the health related quality of life of older adults with heart failure. Heart Lung 2003;32(5):320e327. 24. Rumsfield JS, Havranek E, Masoudi FA, et al. Depressive symptoms are the strongest predictors of short-term declines in health status in patients with heart failure. J Am Coll Cardiol 2003;42(10): 1811e1817. 25. Soto GE, Jones P, Weintrub WS, Krumholz HM, Spertus JA. Prognostic value of health status in patients with heart failure after acute myocardial infarction. Circulation 2004;110:546e551. 26. Coats AJS. Advances in the non-drug, non-surgical, non-device management of chronic heart failure. Int J Cardiol 2005;100(1):1e4.
Appendix KCCQ Total Symptom Score Over the past 2 weeks, how many times did you have swelling in your feet, ankles, or legs when you woke up in the morning? Every morning; three or more times a week, but not every day; one to two times a week; less than once a week; never over the past 2 weeks Over the past 2 weeks, how much has swelling in your feet, ankles, or legs bothered you? Extremely; quite a bit; moderately; slightly; not at all; no swelling Over the past 2 weeks, on average, how many times has fatigue limited your ability to do what you want? All of the time; several times per day; at least once per day; three or more times a week but not every day; one to two times per week; less than once a week; never over the past 2 weeks Over the past 2 weeks, how much has your fatigue bothered you? Extremely; quite a bit; moderately; slightly; not at all; no fatigue Over the past 2 weeks, on average, how many times has shortness of breath limited your ability to do what you want? All of the time; several times per day; at least once per day; three or more times per week but not every day; one to two times per week; less than once a week; never over the past 2 weeks Over the past 2 weeks, how much has your shortness of breath bothered you? Extremely; quite a bit; moderately; slightly; not at all; no shortness of breath Over the past 2 weeks, on average, how many times have you been forced to sleep sitting up in a chair or with at least three pillows to prop you up because of shortness of breath? Every night; three or more times a week, but not every night; one to two times a week; less than once a week; never over the past 2 weeks
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Original Article
Prevalence of Symptoms in a CommunityBased Sample of Heart Failure Patients Sarah Barnes, BA, PgDip, PhD, Merryn Gott, MA (Oxon), PhD, Sheila Payne, RGN, BA, PhD, Chris Parker, BSc, MSc, David Seamark, MA (Oxon), PhD, MBBS, Salah Gariballa, MBBA, MRCP, MD, FRCP, and Neil Small, BSc, MSW, PhD Sheffield Institute for Studies on Ageing (S.B., M.G., C.P., S.G.), and School of Nursing and Midwifery (S.P.), University of Sheffield, Sheffield; Institute of General Practice (D.S.), School of Postgraduate Medicine and Health Sciences, University of Exeter, Exeter; and School of Health Studies (N.S.), University of Bradford, Bradford, United Kingdom
Abstract This study explored the prevalence and burden of symptoms in a community-based sample of patients aged >60 with symptomatic heart failure. Five hundred forty-two patients were recruited from UK general practices. Participants completed the Kansas City Cardiomyopathy Questionnaire every 3 months for 2 years. Data are presented at baseline alongside findings from in-depth interviews with patients and focus groups with primary care professionals. Over half the participants experienced breathlessness and/or fatigue daily. Factors identified as predictive of symptom prevalence and burden were as follows: being female; being staged at New York Heart Association Class III or IV; having symptoms of depression; and having two or more comorbidities. Interviews identified other symptoms, including chest pain, nausea, sleep disruption, and confusion. Participants felt that symptoms restricted activities of daily living. Health professionals reported symptom control as being a concern of patients and identified their own educational needs in this area. Findings suggest that symptom prevalence and burden for this population is high. Primary care professionals should offer comprehensive assessment and treatment of symptoms. J Pain Symptom Manage 2006;32:208e216. Ó 2006 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Heart failure, symptoms, community, older people
Introduction This project was funded by the Department of Health, UK. Address reprint requests to: Sarah Barnes, PhD, Sheffield Institute for Studies on Ageing, University of Sheffield, Elmfield, Northumberland Road, Sheffield, S10 2TU, United Kingdom. E-mail: s.barnes@ sheffield.ac.uk Accepted for publication: April 21, 2006. Ó 2006 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
Heart failure is most common among older people, and while age-adjusted mortality rates are declining in most cardiovascular diseases, both prevalence and mortality in congestive heart failure remain high.1 The main signs and symptoms associated with the condition are breathlessness (dyspnea), fatigue, and edema.2,3 Studies have also identified other common symptoms, including palpitations, chest pain, memory loss, and sleeplessness.4,5 0885-3924/06/$esee front matter doi:10.1016/j.jpainsymman.2006.04.005
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Symptoms such as breathlessness and fatigue can limit the extent of daily physical activities, requiring careful planning to allow for slow performance and frequent stops.4 Depressive symptoms also predict greater mortality in heart failure patients, and negative mood is associated with exacerbated physical symptoms.6,7 The primary goals of heart failure management include reducing disease progression, minimizing symptom burden, and improving quality of life.8 Qualitative research has shown that providing patients with relevant information about their medication may reduce anxiety and improve patients’ ability to interpret or relieve symptoms.5,9 Patient education about symptom recognition and prompt reporting of symptom change may also contribute to the prevention of hospitalizations.10 Previous studies on heart failure symptoms have mainly been carried out in the United States, using retrospective data gathered from hospital records. They have concluded that older patients with heart failure experience symptoms for a relatively long time before hospitalization.10,11 Older people are more likely to attribute symptoms such as fatigue and sleeplessness to normal aging rather than heart failure. Treatment seeking is delayed until symptoms become acute and distressing.10 Very few studies have investigated the symptoms of heart failure patients in community settings. However, a small study by Walke et al.12 found that community-based patients in the United States with advanced chronic diseases did experience multiple symptoms. However, only 29% of their participants had heart failure, the others having chronic obstructive pulmonary disease or cancer. Knowledge of symptom prevalence and burden can help in the identification of patients’ needs in terms of symptom control and service provision, both at an individual level and for community health services more generally. This enables individual needs to be better met and services to be targeted at vulnerable groups. These potential benefits have been compromised by the little that is known about the symptoms experienced by older people with heart failure living in the community. This paper reports the findings of a large-scale study that fills a gap in current knowledge by identifying factors that are predictive of
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symptom prevalence and burden within this population. The study adds depth and context to the experience of both living with heart failure and providing community services for heart failure. It does this via qualitative findings presented from interviews with patients, and focus groups exploring symptom control in heart failure management from the perspective of primary care professionals.
Methods The study, which had both quantitative and qualitative components, was granted ethical approval by the Cardiff Multi-Centre Research Ethics Committee, and all participants gave written consent to participate. More detailed information about the methods used in this study and strategies to involve ill older people in research can be found in another publication.13
Sample Five hundred forty-two people aged 60 and over were recruited from 16 GP surgeries in four diverse areas of the UK: Bradford, Barnsley, East Devon, and West Hampshire. Patients were considered eligible for recruitment into the study if they were aged over 60, could speak English, did not have evidence of significant cognitive impairment, and had selfreported symptomatic heart failure (New York Heart Association [NYHA] Classification IIeIV).14 A pragmatic approach to recruiting patients with a clinical diagnosis of heart failure was adopted,13 and no attempt was made to distinguish between diastolic and systolic dysfunction. While all participants reported NYHA Class IIeIV at recruitment, by the time the baseline questionnaire was completed, 20 participants reported an improvement to NYHA Class I. This change reflects the illness trajectory of heart failure, and these participants were included in the study. Patients who were unwilling or unable to participate in the study were more likely to be female (46% of participants were female compared to 63% of nonparticipants; c2 ¼ 40.22, df ¼ 1, P < 0.001) and older (median age of participants ¼ 77, median age of nonparticipants ¼ 82; c2 ¼ 13.28, df ¼ 3, P ¼ 0.004) than participants.
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Measures Patient participants completed the following questionnaires every 3 months for 2 years: Kansas City Cardiomyopathy Questionnaire (KCCQ),15 SF-36,16 Geriatric Depression Scale (five-item) (GDS-5),17 NYHA classification,14 and a service use questionnaire. KCCQ is a self-administered, disease-specific, health status measure for patients with heart failure. It consists of 23 items that quantify the following clinically relevant domains: physical limitations, symptoms (frequency, severity, and recent change over time), self-efficacy, quality of life, and social limitation.15 Each scale is transformed to a score of 0e100 in which higher scores indicate better health. The KCCQ Total Symptom Score is derived from the domains of symptom prevalence and symptom burden, and measures the symptoms of breathlessness and fatigue and the presence of lower limb swelling due to edema (Appendix). The current paper draws upon questionnaire data collected at baseline (between August 2003 and April 2004), as well as semistructured interviews conducted with a subgroup of 40 participants who reported NYHA Classification III and IV, and nine focus group discussions held with staff from participating primary care practices (n ¼ 79).
Analyses The use of quantitative and qualitative data collection methods adds breadth and depth to the data generated.18 It is recognized that this form of triangulation can help ‘‘support a finding by showing that independent measures of it agree with it, or at least, do not contradict it’’ (p. 266).19
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by each researcher. An agreed coding frame was subsequently constructed, and the few discrepancies that arose were decided by consensus. Coding was grounded in the data rather than decided a priori, and the coding frame evolved during the coding process. One researcher then coded the remaining transcripts (SB). Following basic level coding, broader themes were identified and the interrelationships among these were explored. Statistical Methods. Factors predictive of symptom prevalence and burden were identified using multiple linear regression analysis. All the known characteristics of the patients were potential predictors: gender, baseline NYHA, evidence of depression, age group, socioeconomic status, and number of comorbidities. Age and number of comorbidities were entered categorically because they showed nonlinear effects. Socioeconomic class and NYHA score were dichotomized because of small numbers in some categories. The KCCQ Total Symptom Score was the outcome measure. Residual plots were used to check the model assumptions of linearity, normality, and constant variance and to examine the effect of outlying values. Individuals were excluded from the analysis if data on the Total Symptom Score or any of the predictor variables were missing. Because of the large sample size, effects too small to be of clinical interest could achieve statistical significance. The sample size used for the study was determined in relation to the planned longitudinal analyses of the main study.
Results Qualitative Analysis. Interviews and focus groups were taped (with the consent of participants) and transcribed verbatim. They were then checked by one researcher (SB), and any identifying features were removed. Transcripts were entered into the qualitative software package NUD*IST (Nonnumerical Unstructured Data Indexing Searching and Theorizing) to help manage the large quantity of data generated. Initially, all transcripts were read by two researchers (MG and SB) to ensure familiarity. One interview transcript and one focus group transcript were then coded
Sample Description Table 1 summarizes participant characteristics. As can be seen, 54% of participants were male and 39% were self-classified as being in NYHA Class III or IV. Eighty percent were aged >70 years and 39% were aged >80 years; 55% were married and 36% lived alone. Just under half of participants (47%) showed symptoms of depression.
Prevalence of Symptoms Breathlessness and fatigue were the most prevalent of the symptoms measured, with
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Table 1 Participant Characteristics (n ¼ 542) n (%) Gender Baseline NYHA Depression as measured by the GDS Age groups
Socioeconomic status Comorbidities
Marital status Household Outcome Measure KCCQ Total Symptom Score 0e100
Male Female Ia and IIa III and IV No symptoms of depression Symptoms of depression 60e64 65e69 70e74 75e79 80e84 85þ SE I and II SE III, IV, and V 0 and 1 2 3 4þ Married Widowed, divorced, single Living alone Living with others
293 249 329 211 287
(54) (46) (61) (39) (53)
254 (47) 45 63 117 104 125 88 186 356 231 161 92 58 297 245
(8) (12) (22) (19) (23) (16) (34) (66) (42) (30) (17) (11) (55) (45)
194 (36) 348 (64)
Median (Quartile 1, Quartile 3) 60 (42, 79)
n 542
a This includes 20 participants who were NYHA Stage I for reasons explained in the Methods section.
over half of participants experiencing each at least once a day (54% and 53%, respectively). Twenty-eight percent of participants had to sleep with three or more pillows or sitting up in a chair at least once a week because of shortness of breath. Lower limb swelling was the least prevalent symptom, although 34% of participants experienced it at least once a week (Table 2).
Symptom Burden Over half of participants reported being moderately to extremely bothered by breathlessness
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and fatigue (60% and 59%, respectively), while only 8% and 9% of participants were not bothered at all by these symptoms, respectively. Fifty-three percent of participants were not bothered by, or had not experienced, lower limb swelling in the last 2 weeks (Table 3). There was a significant association between frequency and burden for each symptom (fatigue: c2 ¼ 318.19, df ¼ 4, P < 0.001; breathlessness: c2 ¼ 411.07, df ¼ 4, P < 0.001; lower limb swelling: c2 ¼ 257.22, df ¼ 4, P < 0.001) (Table 4). For example, 63% of those experiencing fatigue daily had high symptom burden, 93% of those experiencing breathlessness weekly had moderate symptom burden, and 76% of those experiencing ankle swelling less than once a week had low symptom burden.
Factors Predictive of Symptom Prevalence and Symptom Burden at Baseline Table 5 shows the association between each potential predictor variable and the Total Symptom Score, adjusting for all other variables in the model. Lower scores on the KCCQ indicate higher symptom prevalence and burden. Results show that women had an estimated 7.2 point lower score on the KCCQ Total Symptom Score than men (95% confidence interval [CI] 4.0, 10.3). People reporting an NYHA Classification of III or IV at baseline had an estimated 20.5 point lower score on the Total Symptom Score than those reporting NYHA II (95% CI 17.1, 23.9). People reporting depression (as measured by the GDS-5) scored an estimated 12.9 points lower on the Total Symptom Score (95% CI 9.4, 116.3). People reporting four or more comorbidities had an estimated 12 point lower score on the Total Symptom Score than those with 0 or 1 (95% CI 6.5, 17.5). Age group and
Table 2 Prevalence of Symptoms Reported by Participants Breathlessness (n ¼ 540), n (%) Every morning Several times per day At least once per day Three or more times a week One to two times a week Less than once a week Never over the past 2 weeks
63 128 95 61 76 58 59
(12) (24) (18) (11) (14) (10) (11)
Fatigue (n ¼ 538), n (%) 77 105 104 64 68 65 55
(14) (20) (19) (12) (13) (12) (10)
Lower Limb Swelling (n ¼ 535), n (%) 75 (14) d d 57 (11) 47 (9) 60 (11) 296 (55)
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Table 3 Symptom Burden Reported by Participants Breathlessness (n ¼ 541), n (%) Extremely Quite a bit Moderately Slightly Not at all No symptom
31 152 141 148 42 27
(6) (28) (26) (27) (8) (5)
Fatigue (n ¼ 540), n (%) 42 160 113 153 48 24
(8) (30) (21) (28) (9) (4)
better, so whether it’s with lying down all night I just don’t know, but I just dread mornings really.’’ Female patient, age 85
Lower Limb Swelling (n ¼ 536), n (%) 24 57 72 96 94 193
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Other participants experiencing fatigue described a range of experiences: an inexplicable lack of energy, variability of the symptom, loss of independence, and in some cases, acceptance of the restrictions caused by the symptoms.
(5) (11) (13) (18) (17) (36)
‘‘What I don’t understand is . why on these days do I have it and I’m right lethargic I fall asleep. I can have a full day like that, but then I’m right as a bobbin day after.’’ Female patient, age 66
socioeconomic status were not significantly associated with the KCCQ Total Symptom Score. Qualitative Interview Data. The qualitative interview data supported the statistical findings that breathlessness and fatigue were the most common heart failure symptoms experienced by the participants. The main themes emerging from the reports of the heart failure symptoms were their effect on activities of daily living, restricted mobility, feelings of uselessness, and confusion over the cause of the symptoms. For example, the participant below describes how her morning routine has changed as a result of the fatigue caused by her heart failure:
‘‘I’m unsteady, you know, and I don’t feel confident . If I lived on the flat it would be better. I just walk round here and I’m really shattered. You know, it’s as much as I can do, I’m afraid that’s the worse part of my illness that I cannot get out and do what I want .’’ Female patient, age 85 Some of the participants reporting breathlessness experienced panic attacks, frustration, depression and, in some cases, uncertainty over the symptoms. For example, the participant below was unsure whether the breathlessness was related to a heart condition:
‘‘. the worse part I think is getting up in a morning. It takes me ages . I think it’s the tiredness that affects me most. I sit on the edge of the bed and I put my slippers on. Then I put one arm in my dressing gown and I’ve to rest before I can get the other arm in . and then I’ve to sit on the bed a bit while I trot off to the bathroom . I just brush my teeth, wash my hands and then I’ve to sit on the toilet seat to get my breath back to pull the curtains back in the bedroom. And then after I’ve pulled the curtains back then I’ve to sit again on the bed, anyway eventually I get down and I make a cup of tea and after I’ve had that cup of tea and been on my nebuliser I start feeling
‘‘. she read it out on her computer . heart failure and congestion of the lungs . I never know whether it’s my lungs or my heart. I mean I can’t say my heart races or anything like that . you know people, their heart begins to beat, there’s nothing like that with it, I don’t have any pain in it or anything. It’s just this breathlessness, I cannot get my breath .’’ Female patient, age 80 The main concern of participants experiencing symptoms of lower limb swelling was that the diuretic medication prescribed to ease the condition resulted in sleep disruption.
Table 4 Symptom Burden by Symptom Prevalence Breathlessness Symptom Burden High Moderate Low n (%).
Fatigue
Lower Limb Swelling
Daily
Weekly
Daily
Weekly
Daily
Weekly
177 (62) 109 (38) 0 (0)
6 (4) 127 (93) 4 (3)
0 (0) 51 (44) 65 (56)
181 (63) 103 (36) 2 (1)
18 (14) 105 (80) 8 (6)
2 (2) 56 (47) 62 (52)
38 (51) 29 (39) 8 (11)
34 (33) 61 (59) 9 (9)
8 (2) 77 (22) 268 (76)
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Table 5 Participant Characteristics and KCCQ Total Symptom Score Outcome Predictor Female Baseline NYHA Evidence of depression Socioeconomic Group IIIeV Age group (relative to <65 years) 65e69 70e74 75e79 80e84 85þ Comorbidities (relative to 0 and 1) 2 3 4þ
Coefficient (SE)
95% CI
P-value <0.001 <0.001 <0.001 0.200
7.2 20.5 12.9 2.2
(1.61) (1.73) (1.78) (1.69)
10.3, 4.0 23.9, 17.1 16.3, 9.4 5.5, 1.1
0.1 0.8 2.7 0.1 0.6
(3.52) (3.17) (3.22) (3.13) (3.31)
7.1, 7.0, 9.0, 6.3, 5.9,
0.849 6.8 5.4 3.6 6.0 7.1 <0.001 4.9 (1.90) 10.3 (2.30) 12.0 (2.79)
8.6, 1.1 14.9, 5.8 17.5, 6.5
‘‘. I were three weeks in hospital while they did all this because all me legs were swollen. I had fluid in me lungs you see, and I hate taking all these water tablets because . I have to get up five or six times at night to go to toilet you know with taking all these water tablets but it’s better than having swelling isn’t it? .’’ Female patient, age 88
As with the in-depth interviews, loss of independence and increased reliance on others for activities of daily living was thought to pose the most worry for patients. On a practical level, this involves restricted mobility in relation to breathlessness and sleep disruption and incontinence, because of the diuretic medication, in relation to lower limb swelling.
Other symptoms than those outlined in the KCCQ Total Symptom Score, but reported in the qualitative interviews, included chest pain, palpitations, dizziness, confusion, nausea, and loss of appetite. Strategies used by the participants to control the symptoms included using mobility aids like scooters or stair lifts, getting help with activities of daily living from family members, employing cleaners and gardeners to assist with housework and, as reported in the statistical data, sleeping propped up on three or more pillows to ease breathlessness.
‘‘They get very worried about ulcers. I think they just get the thought that they’re going to be more dependent on people . they can’t get their shoes and socks on.’’ Male GP, Focus Group 7
Focus Group Data. Many of the health care professionals reported symptom control as being a main concern of patients with heart failure and their families, with many describing the fear and panic experienced by patients when breathless. ‘‘. from a doctor’s point of view I think seeing someone with acute heart failure is the gasping for breath . that is quite frightening when the patients are aware they might come to that stage . or experiencing somebody else having those symptoms can be very distressing for the doctor and patient.’’ Male GP Registrar, Focus Group 2
Another point raised by the health care professionals was that, as treatment becomes less effective, patients have to learn to live with the symptoms, resulting in fear, helplessness, and depression. ‘‘As they see their symptoms gradually getting worse and treatment being increasingly less affective . so I think there is an element of distress to do with you know, so what can we do now? You know, where we are actually going.’’ Male GP, Focus Group 8 ‘‘. some of them seem to . go through periods when they can do more and periods when their symptoms seems to limit them more and their medication hasn’t changed very much or at all.’’ Male GP, Focus Group 3 In relation to educational needs, both the GPs and nurses felt that optimization of medical treatment to improve symptom control could be achieved by improving training in the latest drug therapies.
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‘‘ . we’re notoriously slow at putting into practice definite benefits that we’ve found by research to be of benefit . so probably if you look at our group of patients with end stage heart failure, you know, their medical treatment could be optimised a little bit better .’’ Male GP, Focus Group 2 ‘‘. it’s always good to have continuous updates on pharmacology of heart failure . because it’s often changing, so definitely in that area we get very little once we’re qualified on drugs.’’ Female, District Nurse, Focus Group 2
Discussion Previous research into the symptoms of heart failure has mainly relied on retrospective data gathered from hospital records.10,11,20 This study provides self-reported data from a large, community-based sample of older people with chronic heart failure, as well as perspectives from primary health care professionals. As reported in previous studies carried out among hospitalized patients,4,10,20 breathlessness and fatigue were both highly prevalent and highly burdensome among the participants in this study. However, 34% of this community-based sample experienced lower limb swelling once a week or more compared to 65% of hospitalized patients presenting with lower limb swelling in the study of Evangelista et al.11 and 44% in the study of Nordgren and Sorensen.21 The following factors were identified as being independently associated with high symptom prevalence and burden among heart failure patients aged over 60 years and living in the community: being female, showing symptoms of depression, having a higher NYHA score, and having two or more comorbidities. Increasing age and socioeconomic status were not associated with higher symptom prevalence and burden. There are few studies reporting on gender differences in symptom prevalence in heart failure within a community-based sample. However, studies of patients admitted to hospital with heart failure have found that women are more physically impaired than men,
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particularly in the areas of activities of daily living and social activities.22 Friedman23 also found that, although men and women had a similar number of comorbidities, women experienced more physical impairment at the time of hospitalization. This supports findings from the present study, which identified that being female was associated with a significantly lower KCCQ Total Symptom Score than being male, therefore indicating higher symptom prevalence. Almost half of the participants taking part in the study self-reported symptoms of depression, which was a significant predictor of symptom prevalence after adjusting for the other variables. This finding was reinforced by the data gathered from in-depth interviews in which themes emerged around feelings of uselessness and confusion. This is in line with other research that has suggested that heart failure presents a greater risk for depression than other heart conditions.6 The Rumsfield et al.24 U.S. study found that ‘‘after adjusting for baseline health status and over 20 patient variables, depressed patients were at risk for significant worsening of their heart failure symptoms .’’ (p. 1814). This highlights the importance of addressing depressive symptoms among community-based patients with heart failure. As expected, the self-reported NYHA classification significantly predicted symptom prevalence and burden, as it is directly assessing levels of breathlessness. The qualitative findings suggest that participants in the community experience a wide range of symptoms, including the following most commonly reported ones: breathlessness, fatigue, and lower limb swelling. Themes emerging from the in-depth interviews identified the effects on activities of daily living, restricted mobility, and feelings of uselessness and confusion. The health care professionals taking part in focus groups reported symptom control as the main concern of patients and their carers. This highlights how symptom burden can affect informal carers, as patients experience increased reliance on them as they lose independence. The primary care professionals also pointed out that treatment can become less effective over time. The problems in offering symptom relief can lead to depression, which in turn may exacerbate symptoms.
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Improvement of training in the latest drug therapies was put forward as an educational need for both the GPs and the nurses. Knowledge about the prevalence of heart failure symptoms at the end of life is particularly scarce. Nordgren and Sorensen’s21 study found that, in addition to breathlessness, fatigue, and lower limb swelling, patients experienced a wide range of other symptoms, such as pain, nausea, sleeplessness, palpitations, and loss of appetite. They found that symptoms at the end of life were similar to those of cancer, but while cancer patients have access to specialist palliative care, heart failure patients do not. However, their study was based on a small amount of retrospective data gathered from hospital records. The qualitative data gathered directly from participants in the present study support this research, as patients self-reported a similarly wide range of symptoms. This emphasizes the importance of holistic care provided by primary care teams within the community. Despite providing important new data, certain study limitations must be acknowledged. First, participation rates were relatively low, particularly among the very old, women, and those in the highest NYHA groups, reflecting the difficulties of trying to involve often very ill older people in research.13 The conclusions drawn must, therefore, be considered within the context of the underrepresentation of these groups within the sample. Second, while the KCCQ has been used in a number of large international studies25 and no evidence has been found of differences in performance between countries, a formal UK validation has not been undertaken.
Conclusion Findings from the study suggest that symptom prevalence and burden for older people with heart failure living in the community is high. This information can help clinicians and health care commissioners working with older people to identify those at risk of high symptom prevalence and burden and target interventions appropriately.26 Symptom control is one of the key goals of palliative care, and these findings would support a call for the
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increased provision of palliative care in heart failure.
References 1. Akosah KO, Moncher K, Schaper A, Havlik P, Devine S. Chronic heart failure in the community: missed diagnosis and missed opportunities. J Card Fail 2001;7(3):232e238. 2. British Heart Foundation. Available from: http:// www.bhf.org.uk/. Accessed December 2005. 3. Watson RDS, Gibbs CR, Lip GYH. ABC of heart failure, clinical features and complications. Br Med J 2000;320:236e239. 4. Mayou R, Blackwood R, Bryant B, Garnham J. Cardiac failure: symptoms and functional status. J Psychosom Res 1991;35(4/5):399e407. 5. Bennett SJ, Cordes DK, Westmoreland G, Castro R, Donnelly E. Self-care strategies for symptom management in patients with chronic heart failure. Nurs Res 2000;49(3):139e145. 6. Turvey CL, Schultz K, Arndt S, Wallace RB, Herzog R. Prevalence and correlates of depressive symptoms in a community sample of people suffering from heart failure. J Am Geriatr Soc 2004;50(12): 2003e2008. 7. Carels RA, Musher-Eizenman D, Cacciapaglia H, et al. Psychosocial functioning and physical symptoms in heart failure patients: a within-individual approach. J Psychosom Res 2002;56:95e101. 8. Lonn E, McKelvie R. Drug treatment in heart failure. Br Med J 2000;320:1188e1192. 9. Rogers A, Addington-Hall JM, McCoy ASM, et al. A qualitative study of chronic heart failure patients’ understanding of their symptoms and drug therapy. Eur J Heart Fail 2002;4(3):283e287. 10. Friedman M. Older adults’ symptoms and their duration before hospitalisation for heart failure. Heart Lung 1997;26(3):169e176. 11. Evangelista LS, Dracup K, Doering LV. Treatment-seeking delays in heart failure patients. J Heart Lung Transplant 2000;19(10):932e938. 12. Walke LM, Gallo WT, Tinetti ME, Fried TR. The burden of symptoms among community-dwelling older persons with advanced chronic disease. Arch Intern Med 2004;164(21):2321e2324. 13. Barnes S, Gott M, Payne SA, et al. Recruiting older people into a large community-based study of heart failure. Chronic Illness 2005;1:321e329. 14. Criteria Committee of the American Heart Association. Nomenclature and criteria for diagnosis of diseases of the heart and great vessels. Boston: Little, Brown Medical Division, 1994. 15. Green CP, Porter CB, Bresnahan DR, Spertus JA. Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new
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health status measure for heart failure. J Am Coll Cardiol 2000;35(5):1245e1255.
with end-stage heart failure. Eur J Cardiovasc Nurs 2003;2:213e217.
16. Ware JE. SF-36 health survey: Manual and interpretation guide. Boston: The Health Institute, New England Medical Center, 1993.
22. Riedinger MS, Dracup KA, Brecht M-L, Padilla G, Sarna L. Quality of life in patients with heart failure: do gender differences exist? Heart Lung 2001;30(2):105e116.
17. Hoyl MR, Alessi CA, Harker JO, et al. Development and testing of a five-item version of the Geriatric Depression Scale. J Am Geriatr Soc 1999;47(7): 873e878. 18. Begley CM. Using triangulation in nursing research. J Adv Nurs 1996;24(1):122e128. 19. Miles MB, Huberman AM. Qualitative data analysis, 2nd ed. Thousand Oaks, CA: Sage Publications, 1994. 20. Ahmed A, Allman RM, Aronow WS, DeLong JF. Diagnosis of heart failure in older adults: predictive value of dyspnea at rest. Arch Gerontol Geriatr 2004;38:297e307. 21. Nordgren L, Sorensen S. Symptoms experienced in the last six months of life in patients
23. Friedman MM. Gender differences in the health related quality of life of older adults with heart failure. Heart Lung 2003;32(5):320e327. 24. Rumsfield JS, Havranek E, Masoudi FA, et al. Depressive symptoms are the strongest predictors of short-term declines in health status in patients with heart failure. J Am Coll Cardiol 2003;42(10): 1811e1817. 25. Soto GE, Jones P, Weintrub WS, Krumholz HM, Spertus JA. Prognostic value of health status in patients with heart failure after acute myocardial infarction. Circulation 2004;110:546e551. 26. Coats AJS. Advances in the non-drug, non-surgical, non-device management of chronic heart failure. Int J Cardiol 2005;100(1):1e4.
Appendix KCCQ Total Symptom Score Over the past 2 weeks, how many times did you have swelling in your feet, ankles, or legs when you woke up in the morning? Every morning; three or more times a week, but not every day; one to two times a week; less than once a week; never over the past 2 weeks Over the past 2 weeks, how much has swelling in your feet, ankles, or legs bothered you? Extremely; quite a bit; moderately; slightly; not at all; no swelling Over the past 2 weeks, on average, how many times has fatigue limited your ability to do what you want? All of the time; several times per day; at least once per day; three or more times a week but not every day; one to two times per week; less than once a week; never over the past 2 weeks Over the past 2 weeks, how much has your fatigue bothered you? Extremely; quite a bit; moderately; slightly; not at all; no fatigue Over the past 2 weeks, on average, how many times has shortness of breath limited your ability to do what you want? All of the time; several times per day; at least once per day; three or more times per week but not every day; one to two times per week; less than once a week; never over the past 2 weeks Over the past 2 weeks, how much has your shortness of breath bothered you? Extremely; quite a bit; moderately; slightly; not at all; no shortness of breath Over the past 2 weeks, on average, how many times have you been forced to sleep sitting up in a chair or with at least three pillows to prop you up because of shortness of breath? Every night; three or more times a week, but not every night; one to two times a week; less than once a week; never over the past 2 weeks