Determining Quality of Life
- General description of procedure, equipment, technique
Indications and patient selection
- Details of how the procedure is performed
Interpretation of results
Alternative and/or additional procedures to consider
Complications and their management
What’s the evidence?
General description of procedure, equipment, technique
Heart failure (HF) is a chronic, serious, and expensive health problem worldwide that is notable for its strikingly negative impact on the quality of patients’ lives. Quality of life in patients with HF is worse than that seen in patients with a variety of acute and chronic illnesses, including cancer, rheumatoid arthritis, and Parkinson's disease. Indeed, poor quality of life is a hallmark of HF.
Quality of life is thought by many policy makers, clinicians, and researchers to be the ultimate target of health care, and its improvement or maintenance, the ultimate goal. Despite the importance of quality of life as an outcome of health care, most clinicians do not routinely assess it in their practices.
Clinicians do not routinely assess quality of life for the following reasons: (1) confusion about the definition of quality of life; (2) lack of training in the assessment of quality of life; (3) perception that there are no sound methods for measuring quality of life; (4) uncomfortable using subjective assessments as the basis for defining and evaluating therapy; and (5) belief that their own assessment and objective measures, such as ejection fraction, are adequate surrogates for measuring quality of life.
The purpose of this chapter is to provide clinicians with the information necessary for them to begin assessing quality of life routinely using valid and reliable instruments that are sensitive to clinically meaningful changes. It is also to demonstrate that surrogates of quality of life are not appropriate replacements for patients' reports of their own quality of life.
Definition of quality of life: what it is and what it is not.
Quality of life is the umbrella term describing the global concept of a person's sense of well-being that springs from satisfaction or dissatisfaction with aspects of life important to him or her. In health care, we are more interested in assessing health-related quality of life (HRQOL) because it is a more accurate and sensitive than global quality of life and a reflection of the impact of one's health and the treatment of ill health on quality of life.
Health-related quality of life is defined specifically as a patient’s subjective perception of the impact of an illness on physical, emotional, social, and economic aspects of his/her daily life.
In attempts to measure HRQOL in their patients, some clinicians have used functional status, psychosocial status, or the patient's health perceptions to reflect HRQOL. Although each of these concepts is a part of HRQOL, none of them adequately reflect the whole of HRQOL.
Health-related quality of life and related concepts.
Clinicians wishing to assess HRQOL in their patients need to understand the characteristics (i.e., subjectivity, temporality, and multidimensionality) of HRQOL in order to properly use HRQOL measurement instruments and interpret them appropriately. Health-related quality of life is subjective and personal. That means that HRQOL is what a patient says that it is. A patient's HRQOL is not what a physician or nurse believes it is, and it is not measurable by objective markers.
Each person’s perception of the same condition may be different, even though their objectively measured physical status is the same, and this perception may result in different outcomes. Health-related quality of life does not merely reflect objective clinical status. In fact, most objective indicators of disease severity are weakly related or are not related at all to HRQOL.
Health-related quality of life is the convergence point that reflects patients’ perceptions about the multitude of physical, emotional, social, and financial factors that affect them. As a result, HRQOL may more accurately reflect the impact of a clinical condition and its treatment on a patient than objectively measured clinical status.
Health-related quality of life is temporal. That means that HRQOL changes across time and must be assessed repeatedly, as it changes as a result of therapy (effective or ineffective), hospitalization, life events, and a number of other factors. This aspect of temporality makes HRQOL an excellent indicator of therapeutic effectiveness.
Finally, HRQOL is multidimensional (
Dimensions of Health-Related Quality of Life
|Physical and occupational function, functional capacity||- independence and mobility- intellectual capacity- activities of daily living- job, leisure, and hobby activities- social activities- sexual functioning|
|Psychological state||- anxiety- depression- anger and hostility|
|Social interactions||- family/significant others- extended family- friends- vocational- community|
|Somatic sensations, health perceptions||- symptoms- perceptions about health status|
Advantages of routine assessment of health-related quality of life in clinical practice
First, given its multidimensional and subjective nature, HRQOL, measured appropriately, can naturally reflect the impact of therapy and the side effects of therapy. It is relatively simple to measure, sensitive to change, and reflects outcomes important to patients and clinicians.
Second, patient-centered outcomes have become increasingly important in health care and for health care policy makers. As a multidimensional outcome that reflects the impact of illness and its treatment on patient’s lives, HRQOL may be the most comprehensive patient-centered outcome available. The creation of the Patient-Centered Outcomes Research Institute by Congress in 2010 underscores the increasing emphasis being placed on the patient's perspective and contribution to decision making related to their own health care.
Third, the majority of patients with HF suffer from markedly impaired HRQOL, and HRQOL is worse in this chronic condition than it is in many other chronic illnesses.
Fourth, for many HF patients, particularly those who are symptomatic, in prolonged psychological distress, or who recognize their poor prognosis, improved HRQOL is preferred over longer life with poor HRQOL. In a condition such as HF that is characterized by an unpredictable trajectory and markedly negative impact of symptoms on daily life, many patients consider HRQOL to be a better marker of the efficacy of treatment and express a preference for better HRQOL compared to longer life.
Fifth, HRQOL may be very helpful in deciding which patients are best suited for referral for health care services such as HF disease management.
Sixth, HRQOL is an excellent marker of risk among HF patients. Poor HRQOL predicts rehospitalization and mortality. This finding has major implications for designing interventions to improve outcomes, and for medical decision making as therapeutic options become more costly economically and in terms of patient burden, or when there is little difference in outcomes between therapeutic options.
Indications and patient selection
Health-related quality of life should be assessed in all patients with HF. Assessment is particularly important in symptomatic patients, and ability to improve HRQOL scores should be a major consideration in deciding on changes in therapy.
It is also important to perform serial measurement of HRQOL and it is recommended that it be measured at all routine visits, and scores compared to previous scores. It is essential that clinicians review scores with patients. Measurement of HRQOL is useless if it is not used to form a partnership with the patient to gauge the success or failure of therapy. It is helpful to chart scores so that you and the patient can view changes in HRQOL easily.
Because depression, high symptom burden, and poor functional status are the strongest predictors of poor HRQOL, patients with or suspected of having these problems particularly benefit from assessment of HRQOL as it provides a marker level from which to gauge the effectiveness of treatment. It must be emphasized that measurement of HRQOL is essential even when you know someone has seriously impaired functional status and you might assume they would have poor HRQOL.
Assessment of HRQOL reveals the impact of impaired functional status (or other problems) on the patient and the individual's specific response to that impairment or perception of its effect on them. It is quite common to see patients with less severe functional impairments report worse HRQOL than those with very severe functional impairments.
There are no contraindications to the assessment of HRQOL in patients with HF. There are, however, situations when patients cannot respond appropriately to answer the questions and provide meaningful data. When patients are cognitively impaired and can't respond to questions about their HRQOL, some have suggested that family members might be appropriate surrogates.
Although this alternative is better than obtaining no information about HRQOL, clinicians should be aware that information obtained from surrogates is often faulty. Others, who do not live with or know a patient extremely well, are very poor surrogates for estimating a patient's HRQOL. For example, physicians' predictions about patients health perceptions compared to patients own reports of their health perceptions are similar in fewer than half of cases.
Details of how the procedure is performed
Proper assessment of HRQOL is driven by careful consideration of its characteristics. Health-related quality of life is a multidimensional construct that reflects patients’ perceptions of the positive and negative aspects of physical/health, emotional, social and economic domains, and includes the impact of somatic discomfort and other symptoms produced by an illness disease or its treatment.
Although there are a multitude of instruments available for the measurement of quality of life, it is important in HF practice to use an instrument that performs reliably, that validly represents HRQOL, and that is sensitive to the impact of therapy. The choices range from measures of overall quality of life to generic HRQOL instruments (e.g., the SF-36 and its variations) to disease-specific HRQOL instruments (e.g., the Kansas City Cardiomyopathy Questionnaire or the Minnesota Living with Heart Failure Questionnaire).
A disease-specific instrument is recommended because disease-specific HRQOL instruments demonstrate better responsiveness in patients with HF than do generic HRQOL instruments.
Choice of Instrument for Assessment of HRQOL
Given that a disease-specific measure of HRQOL performs more sensitively in determining clinically meaningful changes in HRQOL, there are two instruments recommended to clinicians, the Kansas City Cardiomyopathy Questionnaire (KCCQ) and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). Both of these instruments have been used extensively, and have excellent reliability, validity, and sensitivity. Both instruments are easily completed by patients in less than 10 minutes.
The KCCQ is a 23-item questionnaire that quantifies HRQOL in the domains of physical limitation, symptoms (frequency, severity), overall quality of life, social interference, and self-efficacy, which are dimensions shown to be key aspects of HRQOL in persons with HF. Each domain is scored based on the summed responses from individual items rated on a Likert scale that ranges from 1 (lowest level of function) to 5 (highest level of function).
An overall summary score is also obtained. Scale scores are transformed to a 0 to 100 score by subtracting the lowest possible scale score from the sum, then dividing by the range of the scale and multiplying by 100. Higher scores indicate better HRQOL. Patients are asked to consider the impact of HF on the items in the instrument when answering.
To obtain the KCCQ along with scoring and interpretation information go to the Cardiovascular Outcomes, Inc., website (http://cvoutcomes.org/) where the originator of the instrument, Dr. John Spertus, has it licensed. Scoring versions are available along with translations of the instrument into multiple languages.
The MLHFQ consists of 21 items that are rated on a scale from 0 (no impact on HRQOL) to 5 (most negative impact on HRQOL). Items on the instrument assess the impact of symptoms, medications, hospitalizations, physical limitations, cognitive problems, and emotional distress.
The MLHFQ yields an overall scale score that is sufficient in clinical practice for assessment. The instrument also has two subscales, a physical and emotional subscale, but their use is unnecessary to monitor HRQOL in clinical practice. The instrument is scored by adding the ratings of all of the items. The range of possible scores on the total scale is 0 to 105 and higher scores indicate worse HRQOL.
To obtain the MLHFQ along with all relevant information go to the University of Minnesota Office of Technology Commercialization Web page for the instrument (http://www.license.umn.edu/Products/Minnesota-Living-With-Heart-Failure-Questionnaire__Z94019.aspx). The current fee for use of the instrument with your patients is a one-time fee of $500.00. The instrument is free of charge for educational or didactic purposes.
Both instruments are designed to be filled out by patients. However, both have also been tested and found to be reliable and valid given different administration techniques including interviews by nurses, or having someone read the instrument to the patient. Thus these are acceptable alternative administration techniques.
A practical technique for use in clinical practice is to choose which instrument you intend to use; only one is needed and the same one should be used for all patients in your practice so that you and all staff become familiar with that instrument. Have the patient complete the instrument while waiting to see you, have the staff score the instrument, and then discuss the results during the visit.
Although there are no well-defined parameters for how often HRQOL should be measured, it seems prudent to assess it at each patient visit or when marked changes are suspected. Both instruments have also been commonly used in hospitalized patients once they are stable. Scores are worst in patients hospitalized with an exacerbation of HF, and thus provide a hallmark score for the worst score you are likely to see in a given patient, and a level from which you want to work to improve HRQOL.
Interpretation of results
Information on interpretation of results for both the MLHFQ and the KCCQ is available on the websites listed above for obtaining the instruments.
For the MLHFQ, higher scores mean worse HRQOL. For the KCCQ, higher scores mean better HRQOL. For both instruments, a change in score of 5 or more is considered clinically meaningful.
Greater changes are possible and are seen in many patients as HRQOL improves related to therapy that successfully reduces symptom burden, for example. Using the KCCQ, changes of 10- and 20-points indicate moderate and large clinical changes, respectively.
For comparison purposes in your practice, data from a number of studies provide relevant information. With regard to our studies and use of the MLHFQ, we have found an average score of 14 in healthy elders without HF or symptomatic cardiovascular disease (representing very good HRQOL), an average score of about 50 to 55 in outpatients with HF, and an average score of about 75 among patients hospitalized with an exacerbation of HF.
It is very common to see higher scores (reflecting worse HRQOL) on the MLHFQ in hospitalized patients that decrease after discharge. If scores do not improve after hospitalization, this is an extremely poor prognostic sign and steps should be taken to determine the underlying cause.
Studies in which the KCCQ have been used demonstrate that among symptomatic patients with HF who have been admitted to the hospital within the previous 12 months, the average score is 65. In the EVEREST trial, KCCQ scores during hospitalization for HF were 32, had improved to an average of 53 1-week after discharge and to 58 at 24-weeks after discharge. These numbers provide clinicians with relevant comparison data.
Alternative and/or additional procedures to consider
None. Clinicians may be tempted to use a one-item question or to simply ask, "how are you feeling today?" as an easy way to get at a patient's HRQOL. This method is completely inadequate as HRQOL is a multidimensional construct that cannot be reflected by one question.
In addition, the usual rote answer to such a question is "fine" or something equally meaningless because the patient is unable to express the depth or breadth of how their condition is affecting their life without prompts to help them consider the full range of potential effects.
Complications and their management
There are no complications associated with the assessment of HRQOL.
What’s the evidence?
Allen, LA, Gheorghiade, M, Reid, KJ. "Identifying patients hospitalized with heart failure at risk for unfavorable future quality of life". Circ Cardiovasc Qual Outcomes. vol. 4. 2011. pp. 389-98.(These investigators studied the predictive ability of variables available at hospital discharge for persistently poor health-related quality of life or death. Independent predictors of the combined end point were low admission score on the Kansas City Cardiomyopathy Questionnaire [indicating poor quality of life], high B-type natriuretic peptide, hyponatremia, tachycardia, hypotension, absence of beta-blocker therapy, and history of diabetes mellitus and arrhythmia. The investigators suggest that this information can be used to target patients for whom aggressive treatment options and/or end-of-life discussions should be strongly considered before hospital discharge
Dekker, RL, Lennie, TA, Albert, NM. "Depressive symptom trajectory predicts 1-year health-related quality of life in patients with heart failure". J Card Fail. vol. 17. 2011. pp. 755-63.(Findings from this research study demonstrate the importance of depression as a predictor of poor health-related quality of life. Heart failure patients whose depression failed to improve over time had worse health-related quality of life than those without depression or those whose symptoms improved over time. Maintenance of depressive symptoms over time was the strongest independent predictor of poor quality of life.)
Green, CP, Porter, CB, Bresnahan, DR, Spertus, JA. "Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure". J Am Coll Cardiol. vol. 35. 2000. pp. 1245-55.(This paper describes the extensive psychometric testing that went into development of the Kansas City Cardiomyopathy Questionnaire, and reports on reliability, validity and responsiveness of the instrument.)
Moser, DK, Yamokoski, L, Sun, JL. "Improvement in health-related quality of life after hospitalization predicts event-free survival in patients with advanced heart failure". JCard Fail. vol. 15. 2009. pp. 763-9.(This study demonstrates that failure of health-related quality of life to improve after discharge from a hospitalization for heart failure inpatients with advanced heart failure is an independent predictor of rehospitalization or death in the following 6 months. Health-related quality of life improved after discharge for 68% of patients, while remaining the same or decreasing in the remainder. Even in patients with advanced heart failure, improvement in health-related quality of life is possible after hospital discharge, but failure of quality of life to improve is a particularly poor prognostic sign.)
Heo, S, Moser, DK, Lennie, TA, Zambroski, CH, Chung, ML. "A comparison of health-related quality of life between older adults with heart failure and healthy older adults". Heart Lung. vol. 36. 2007. pp. 16-24.(In this research report, health-related quality of life is compared between elders and patients with heart failure. The study demonstrates striking differences in quality of life and shows that poor health-related quality of life among patients with heart failure is not a function of their older age.)
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