Interview: Quality of life from the perspective of patients with chronic heart failure

Third Division of Cardiology
Medical University of Silesia
Katowice, POLAND

Quality of life from the perspective of patients with chronic heart failure

Interview wi th M. Tendera, Poland

Prognostic improvement in patients with heart failure should be paralleled by better quality of life. Therefore, quality of life needs to be taken into account in patient management. Assessment of functional status alone is not adequate, since quality of life is also driven by psychological and social factors. In heart failure patients, not only dyspnea and fatigue, but also depression, have an impact on both quality of life and prognosis. Although quality of life has been mostly measured in the context of clinical trials and surveys, its assessment in clinical practice is feasible and needs to be encouraged. Since impaired quality of life in different diseases have common features, generic tools, such as Euroqual or Short Form (36) (SF-36) Health Survey can be applied in patients with heart failure. The Minnesota Living with Heart Failure (MLHF) questionnaire is the most commonly used specific tool. Different therapeutic strategies, even those shown to improve prognosis, can be associated with side effects perceived by patients as threatening. Patient education plays an important role in alleviating their concerns. Dedicated heart failure clinics, offering continuous counseling and exercise programs, appear to be the best setting to improve self-management and quality of life. In patients with advanced heart failure, the use of devices such as resynchronization therapy and left ventricular support devices, offer both symptomatic and prognostic improvement.

Medicographia. 2011;33:440-443 (see French abstract on page 443)

Quality of life (QoL) is not only an important goal of heart failure (HF) treatment, it is also an important measure of the effects of an illness or of a treatment from the patient’s perspective. HF is associated with limitation of physical functioning, withdrawal from activities and social contacts, depression, sleep disturbances, and anxiety, all of which increase with the severity of the disease.

How do major clinical symptoms in heart failure such as dyspnea, tiredness, and fatigue, affect QoL?
Functional impairment, as assessed by the New York Heart Association (NYHA) class, is a very strong predictor of QoL in patients with HF. However, direct comparisons between peak exertional oxygen consumption and the 6-minute walk test on the one hand, and physical and emotional domains of QoL on the other, showed only mild-to-moderate correlations. Therefore, functional capacity cannot be used as a surrogate of QoL in HF patients.

It needs to be emphasized that emotional distress, as well as social and economic deprivation, also contribute to poor QoL. Limitation in physical capacity experienced by HF patients largely contributes to their loss of status in society and family. Sleep is also an important factor for QoL. Poor sleepers tend to fare less well in physical, psychological, and social domains. In addition, poor health perception and lower education level have been identified as factors that can compromise QoL.

It has to be stressed that patient education, focused on adherence, self-care management, and physical training, can significantly improve QoL.1 This effect is likely to be accomplished in the setting of the dedicated HF outpatient clinics.

How is QoL related to other clinical outcomes, such as rehospitalization and mortality rates in heart failure patients?

Treatment of patients with HF has several goals, most importantly prolongation of survival, alleviation of symptoms, and improvement in QoL. Different therapies may achieve one or more of these goals. There is a clear link between poor QoL and increased risk of hospitalization and death. Psychological distress, especially depression and severe anxiety, are predictors of hospital readmissions in patients with HF.

Recently, worsening of depression was found to be a strong predictor of poor prognosis.2 Even after controlling for baseline depression and established risk factors, such as HF cause, age, ejection fraction, N-terminal prohormone of brain natriuretic peptide (NT pro-BNP) concentration, and prior hospitalization, depression was associated with poorer prognosis. Therefore, it seems advisable to routinely assess HF patients for depression. The Beck Depressive Inventory is a simple, self-administered tool that can be used for this purpose.3

Could you talk to us about the generic and diseasespecific tools used to assess patient QoL in heart failure surveys and studies?

Generic tests are useful because impairment of QoL is only partly dependent on the nature of the disease. A recent study comparing patients with advanced cancer, chronic obstructive pulmonary disease (COPD), and HF found that the physical and psychological burdens of the disease show many similarities.4

There are a number of different generic tests that can be used to assess health-related QoL in patients with HF. They range from simple questions assessing overall patient well-being at a certain point in time or comparing it with the previous status, to more complex questionnaires addressing different dimensions of QoL. The Euroqual scale represents a calibrated 100-mm line, on which 0 corresponds to the worst, and 100 to the best overall feeling at the time of assessment. The MacMaster Overall Treatment Evaluation (OTE) questionnaire5 represents a different approach. It does not provide overall assessment of well-being, but gives a comparison of the current status with the previous one, based on no change, or different degrees of improvement or worsening. These simple generic tests address the general perceived health status rather than the whole spectrum of QoL.

In contrast, the 36-item Short Form (SF-36) Health Survey was designed to assess eight health domains: limitations in physical, usual role, and social activities, bodily pain, psychological distress, vitality, and general health perception. SF-36 is self-administered, its validated form is available in many different languages, and it can be used in clinical practice and research, as well as in general population surveys, in patients with various health problems.6

The Minnesota Living with Heart Failure (MLHF) questionnaire was specifically designed for use in HF patients.7 It consists of 21 questions. The answers are numerical, ranging from 0 to 5, with 0 denoting no impact, and 5 a serious impact of HF. The questions address the physical dimension, most importantly the impact of muscle fatigue and dyspnea, and the emotional dimension of QoL. The MLHF questionnaire proved to be useful in clinical research to quantify the effect of different interventions, such as drug treatment, resynchronization therapy, exercise programs or multidisciplinary HF units on the well-being of patients with HF.

Both generic (SF-36) and disease-specific (MLHF) tools proved useful in predicting long-term mortality in patients with HF.8 A poor mental component score in SF-36, and physical component summary in MLHF were associated with an increase in all-cause mortality (hazard ratio 1.38 and 1.31, respectively).

The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a 23-item, self-administered questionnaire with scales quantifying multiple domains of health status for patients with heart failure, including symptoms, physical function, social function, self-efficacy, and health-related quality of life. Each scale is scored from 0 to 100, where a higher score represents better health status. To facilitate interpretability, two summary scores were developed: Overal Summary Score (OSS) and Clinical Summary Score (CSS). The validity, reproducibility, and sensitivity to clinical change of the KCCQ have been well established in populations with heart failure.9

It is important to remember that QoL assessment needs to be done at the very beginning of the patient’s visit, before the contact with the managing physician, in order to avoid bias related to the patient-doctor interaction.

How should a patient be approached in clinical practice to assess QoL?

Patients’ well-being is always addressed by physicians, who most commonly open the conversation by asking “How are you feeling?” However, formal assessment of QoL is rarely used in clinical practice. QoL is usually substituted by symptomatic improvement, which only reflects the physical component of QoL. It is, however, clear that QoL can be easily and successfully assessed outside of clinical research.10 Moreover, nonphysical domains of QoL, such as depression, can have an important impact not only on patients’ well-being, but also on prognosis.2 Therefore, QoL should be more commonly assessed in clinical practice, in order to recognize and better address different patients’ needs. All the tools, both generic and disease specific, are simple enough to administer in clinical practice. Time constraints related to everyday patient care may be a limiting factor in formal QoL assessment implementation.

To what extent do side effects of treatment adversely affect QoL and lead to poor compliance with treatment in heart failure patients?

Angiotensin-converting enzyme (ACE) inhibitors, angiotensin receptor blockers (ARBs), and β-blockers have a well-documented positive effect on survival in patients with HF. ACE inhibitors and ARBs improve exercise tolerance and thereby positively influence QoL. The effects of β-blockers are more complex.

The meta-analysis assessing the impact of β-blocker therapy on quality of life in HF patients in a total of 9 trials involving 1954 patients found only a trend toward improvement in QoL in HF patients receiving β-blockers, but the effect was very small and did not reach statistical significance.11 Mortality reduction is dose dependent, but dose increasemay aggravate side effects, such as bradycardia, hypotension, fatigue, sleep disorders, cold extremities, or sexual dysfunction, which may impair QoL. On the other hand, diuretics or digitalis may improve QoL, while having either a neutral or a negative effect on survival.

Patients who experience drug-related adverse events often perceive them as serious (46%), with major consequences on their daily life (40%).12 All known side effects of treatment need to be discussed with the patients up front, in order to make them understand their nature and avoid an unnecessary negative impact on QoL.

Occurrence of side effects does not always necessitate treatment termination. In those instances where treatment should and can be continued, worsening in QoL may be a price to pay for a chance of improved survival. The patient’s informed decision is crucial here, to avoid treatment compliance being affected.

How important is QoL in the clinical decisionmaking process and when determining therapeutic benefits?

Without doubt, a parallel improvement in prognosis and QoL is the best case scenario. As mentioned earlier, treatment with ACE inhibitors, ARBs, and β-blockers is usually associated with improved prognosis and better QoL, while β-blockers showed a neutral effect on QoL. Combination of isosorbide dinitrate and hydralazine in African-American patients with HF is also associated with a positive prognostic effect and improvement in QoL.

Recent data indicate that both prognostic and functional improvement may be achieved in patients with advanced HF with the use of left ventricular assist devices (LVAD).13 Despite high costs, a substantial growth of the number of implanted LVAD, especially those with continuous flow, has been observed in the US in recent years.13 Since the European Society of Cardiology clinical practice guidelines for the first time accepted LVAD as destination therapy in advanced HF, the same trend may be expected in Europe.

Most of the time, prognostic improvement should be the ultimate goal of treatment. It should be mentioned, however, that improved QoL may be preferred over life prolongation by certain patient subsets, such as the very elderly and those with terminal disease. Poor QoL affects not only the patients, but also people who care for them. Thus, an open discussion of the preferences with the patients and their families is extremely important. Assisting HF patients in maintaining a positive attitude toward their health status should be an important treatment goal.

How important is assessment of QoL in clinical trials for interpreting clinical outcomes? Is it complementary to other end points?

It is very important, and most outcome trials conducted in HF patients do take QoL into account. Mortality and morbidity parameters are easy to measure, and their statistical analysis helps in establishing treatment efficacy and safety in the studied cohort. Statistics, however, do not reflect the situation of an individual patient enrolled in the study who perceives medical events on a binary basis (yes or no). It is therefore of crucial importance to study patients’ perception of health-related limitations in different domains of their life. Formal assessment of QoL serves this purpose. The patient is a subject, not an object of treatment. It is therefore crucial to explore his/her point of view on monitoring medical care outcomes. _

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Keywords: heart failure; quality of life; questionnaire; self-management; side effect