A story of maladies, misconceptions and mishaps: effective management of heart failure
Introduction
Nearly 5 million Americans suffer from congestive heart failure (CHF) (American Heart Association, 2002). CHF is expected to double in prevalence by the year 2030 (US Department of Health, 1991), and the number of CHF-related physician visits and hospitalizations are also expected to rise in the coming decades (Stewart, MacIntyre, Capewell, & McMurray, 2002). It is the most common reason for hospitalization and emergency department, or emergency room (ER) visits by persons over 65 years of age in the US. Hospital discharges for CHF have more than doubled from 1979 to 1999 (American Heart Association, 2002). Despite the myriad studies demonstrating the effectiveness of medications in improving survival and quality of life (Packer et al., 2001; CONSENSUS, 1987; SOLVD, 1991; Hunt et al., 2002), the prognosis for individuals with CHF is grim; 75% of the men and 62% of the women die within 5 years of diagnosis (Ho, Anderson, Kannel, Grossman, & Levy, 1993). In a more recent European study, median survival of patients hospitalized for CHF increased between 1986 and 1995 (from 1.2 to 1.6 years), but CHF patients’ prognosis was still poor (MacIntyre et al., 2000). In fact, in contrast to mortality declines for most heart and blood vessel diseases, CHF deaths in the USA increased 145% from 1979 to 1999 (American Heart Association, 2002).
Recent clinical guidelines highlight the need for patients to have a solid understanding of CHF. Understanding is not confined to abstract, “book” knowledge (ACC/AHA Task Force, 1995). To avoid and/or minimize life-threatening exacerbations and maintain quality of life, persons with heart failure must receive and make regular and appropriate use of recommended treatments and adopt life style changes. US Federal health guidelines suggest that clinicians counsel CHF patients to adhere to drug regimens and a very low sodium diet to avoid fluid retention (Hunt et al., 2002). They should also teach patients to regularly monitor early markers of fluid retention that herald a deterioration, including increases in weight, swelling and shortness of breath, and appropriately respond to these markers. For example, patients should weigh themselves daily, contact their providers if their weight changes by more than 3–5 pounds, and adjust their diuretic dose based on weight changes (Konstam, Dracup, & Baker, 1994).
It is clear that many persons with CHF do not initiate and maintain the self-management strategies needed to avoid rapid deterioration of their condition and the need for emergency assistance. Without self-care, their condition typically deteriorates rapidly and patients then seek help at an ER—not the optimal place to treat patients with complex, chronic diseases—or they may require hospitalization for more intensive treatment. Researchers have begun to uncover the obstacles persons with CHF must overcome so they can manage this illness. While practice guidelines have synthesized best evidence and clinical judgment into specific recommendations for clinicians, many patients receive suboptimal care. Important physician factors that may contribute to CHF exacerbations are under-utilization of established therapy such as ACE inhibitors that can reduce morbidity and mortality, and suboptimal education, including low rates of general and dietary counseling (Smith et al., 1998; CONSENSUS, 1987; SOLVD, 1991; IPRO, 1996). Medication and dietary nonadherence (with sodium restriction), inadequate discharge planning and follow-up, lack of social support and not seeking medical attention promptly when symptoms recur also increase the risk of CHF exacerbations (Ni et al., 1999; Ghali, Kadakia, Cooper, & Ferlinz, 1988; Chin & Goldman, 1997; Vinson, Rich, Sperry, Atul, & McNamara, 1990, Tsuyuki et al., 2001; Michalsen, Konig, & Thimme, 1998).
Although these data suggest great potential to improve the care of CHF patients, a compelling need to do so, and specific areas in which efforts can be made to improve CHF-related function, programs designed to achieve these goals have met with limited success. Many of the programs which have shown improvements in patient outcomes have required substantial investments in multi-disciplinary staff time which may prove to be unsustainable and infeasible in practices with limited resources (Naylor, Brooten, & Jones, 1994; Rich, Beckham, & Wittenberg, 1995; Foranow et al., 1997; Hunt et al., 2002). Newer, less cumbersome programs involving nurse or pharmacist management have shown decreases in hospitalizations and improved quality of life (Blue et al., 2001; Krumholz et al., 2002; Varma, McElnay, Hughes, Passmore, & Varma, 1999; West et al., 1997), but with the exception of one study (Stewart & Horowitz, 2002), there has been no clear improvement in survival. The modest success of interventions points to the need for a fundamental reexamination of how CHF patients understand and manage their physical conditions.
Interventions conducted to date do not benefit from sufficient data on which potentially modifiable factors are responsible for suboptimal treatment, inadequate self-management and adverse CHF outcomes. Specifically, it is important to determine whether patients understanding and perception of CHF capture the features of the disease that are critical for their participation in their own care. For example, do people with CHF know why it is important to take certain medications, check their weights and avoid salt? Do they attend to and perceive the benefits of these protective procedures? Have patients been taught how to monitor the effectiveness of these strategies? Do they know what to do if the strategies do not appear to be working? Can we identify potentially correctable lacunae in their understanding and perceptions that are responsible for less than optimal self-management?
We combined two approaches to answer these questions. Initially, we conducted and analyzed a small set of patient interviews to elucidate patients’ knowledge and beliefs about CHF, the strategies they use for self-care, the cues guiding these strategies and barriers they face in trying to maintain their health. We then examined the match between the themes we uncovered, and the factors identified as critical for self-management by the common-sense model of illness (Leventhal, Meyer, & Nerenz, 1980; Leventhal, Diefenbach, & Leventhal, 1992; Brownlee, Leventhal, & Leventhal, 2000). According to this self-regulation model of the mental processes involved in the management of illness threats, self-management reflects how patients’ conceptualize their perceptual experience with a disease.
We began with a hypothesis that three aspects of this model, depth, breadth and coherence, will prove critical for self-management of CHF as a chronic rather than an acute condition. First, chronic management should require that the chronic, low level symptoms and signs which make up the background of the illness experience, be connected to their label, CHF. The bi- directional link between abstract concepts (CHF) and perceptions (symptoms and signs) ought to give depth or meaning to the representation of CHF. In other words, chronic symptoms need to be seen as indicators of CHF if they are to elicit even the simplest, behavioral procedures (Meyer, Leventhal, & Gutmann, 1985; Leventhal & Diefenbach, 1991). Our second hypothesis is that these labeled symptoms need to have breadth, including an understanding of their timeline (symptoms worsen when untreated), consequences (untreated symptoms can be life-threatening), specific causes (buildup of fluids), and that worsening symptoms can be controlled with appropriate action. Our third hypothesis is that the chronic model or representation of CHF (label, symptoms, time-line, etc.) needs to be coherent, or tightly linked to a specific set of procedures (such as taking medications) to manage both chronic symptoms and symptom exacerbations. Plans should incorporate concrete cues that elicit action at specific times and places, and appropriate criteria for evaluating action efficacy (Leventhal, 1970). The examination of the qualitative data presented here is designed to provide a direct view of these processes which have been inferred from but not made visible in prior, quantitative analyses (see Brownlee et al., 2000).
The present study used interviews to focus on patient factors that may serve as barriers to effective self-management in response to the picture of fluctuating symptoms that CHF offers to a sick individual. Through comparing these responses to what is currently the most conceptually differentiated model of the cognitive processes involved in self-regulation, we clarified the nature of these barriers, and opened and expanded our view of the dynamics of the processes underlying self-regulation in response to chronic illness. We believe uncovering gaps in knowledge and skills for the self-management of CHF as a chronic condition, will provide an entry point for the development of programs designed to decrease the frequency and severity of episodes of decompensation and maximize quality of life.
Section snippets
Methods
Researchers used a computerized database of inpatient and ambulatory patient encounters to identify patients with a diagnosis of CHF treated at an urban, academic, tertiary care hospital in the United States. We selected a random sample of 50 patients, from those who had been admitted and/or treated for CHF in the hospital, the ED or seen in the internal medicine or cardiology clinics. We stratified the sample by the prior year's rates of hospitalizations, ED and ambulatory visits. Individuals
Results
The patients ranged in age from 52 to 89 years; nine participants were women, eight were African American, five Latino, and six Caucasian. Using the New York Heart Association Classification to estimate severity of illness, no patients had class I (asymptomatic) CHF; five patients had class II (mild to moderate) CHF; seven had class III (moderate to severe), and seven had class IV (the most severe) CHF (Critical Committee, 1964). Five of the patients had private or HMO physicians, 12 had clinic
Discussion
These data reveal that this sample of patients did not appear to have adequate information about CHF, were not given the tools to prevent, thwart, or recognize mild or moderate exacerbations, and had barriers to receiving non-emergent care when their conditions did worsen. The comparison of these three themes with the structure and content of the common sense model suggests that, despite considerable advances in the care of CHF, virtually all of the patients in our sample continued to have poor
Conclusion
By soliciting patients’ in-depth perspectives, we uncovered pervasive patient misunderstandings and lack of knowledge that suggest patients need more guidance to better care for their CHF. Our respondents suffered with chronic symptoms, but could not track how their symptoms changed with time, or what caused them to change. They did not understand that symptoms such as swelling and dyspnea were closely related to their salt intake and did not know how to monitor their symptoms over time or
Acknowledgements
The Mount Sinai Medical Center Auxiliary Board (0166-9581). The Agency for Healthcare Research and Quality (02-54-5251).
We thank the patients we interviewed for their time and ideas and Mark Chassin for his support.
References (54)
- et al.
The dilemma of seeking urgent careAsthma episodes and emergency service use
Social Science & Medicine
(1993) - et al.
Regulation, self regulation and regulation of the self in maintaining physical health
Older adults’ symptoms and their duration before hospitalization for heart failure
Heart Lung
(1997)- et al.
ACC/AHA guidelines for the evaluation and management of chronic heart failure in the adultExecutive summary
Journal of Heart and Lung Transplant
(2002) - et al.
Randomized trial of an education and support intervention to prevent readmission of patients with hear failure
Journal of the American College of Cardiology
(2002) Findings and theory in the study of fear communications
Advances in Experimental Social Psychology
(1970)- et al.
A comprehensive management system for heart failure improves clinical outcomes and reduces medical resource utilization
American Journal of Cardiology
(1997) - ACC/AHA Task Force. (1995). Guidelines for the evaluation and management for heart failure. Journal of the American...
- American Heart Association. (2002). Heart stroke and statistical update. Dallas, TX: American Heart...
- et al.
Illness representations and matching labels with symptoms
Health Psychology
(1989)
Social support and health-related quality of life in chronic heart failure patients
Quality of Life Research
Research methods in anthropology
Preventable hospitalizations and access to health care
Journal of the American Medical Association
Randomised controlled trial of specialist nurse intervention in heart failure
British Medical Journal
Symptom representations and affect as determinants of care seeking in a community dwelling adult sample population
Health Psychology
Factors contributing to the hospitalizaiton of patients with congestive heart failure
American Journal Public Health
Impact of a comprehensive heart failure management program on hospital readmission and functional status of patients with advanced heart failure
Journal of the American College of Cardiology
Precipitating factors leading to decompensation of heart failureTraits among urban blacks
Archives of Internal Medicine
Implementation intentionsStrong effects of simple plans
American Psychologist
Predictors of quality of life in patients with advanced heart failure awaiting transplantation
Journal of Heart and Lung Transplantation
Patient education needs as reported by congestive heart failure patients and their nurses
Journal of Advanced Nursing
Survival after the onset of congestive heart failure in Framingham heart study subjects
Circulation
The actor and the observerDivergent perceptions of the causes of behavior
Suffering in deferenceA focus group sudy of older cardiac patients’ preferences for treatment and perceptions of risk
Quality in Health Care
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