Quality of Life from a Patient’s Perspective: Can We Believe the Patient? uality of life (QOL) is a multidimensional concept that includes physical, psychological, and social domains.1-4 Theoretically, QOL is defined from the perspective of the patient. However, functional status is still frequently used by the clinician as a proxy for QOL.5 Is this a matter of not believing that the patient is qualified to assess their QOL? Or is it a matter of not recognizing the clinical importance of assessing QOL from a patient’s perspective?
Related Literature The discussion about how to measure QOL is akin to the discussion about measurement of pain decades ago. The debate about measurement of pain focused on the objectiveness, or lack of objectiveness, of patient’s rating of their pain and whether measurements based on the patient’s perception of the pain provided valid measurement of this concept. The debates continued for years before a general consensus was reached. Today, most espouse that pain is whatever the patient says it is.6,7 Despite this consensus, pain is still treated to a great extent on the clinician’s perception of the pain.6 Thus, there continues to be a gap between theory and practice in the clinical setting. This gap is similar to what is being observed in the clinical setting with QOL.
Perceptions and Perspective The pain literature provides valuable background on the importance of perceptions and perspectives. Perceptions vary based on culture, experience with pain, and perspective of whether or not you are the person experiencing the pain. It is known that individuals’ thresholds for pain differ along with their response to pain medication. This is a result of physiological differences as well as the personal and cultural meaning of the pain.8-10 There are many similarities among persons for the same cultural and racial background due to the fact that culture shapes the Curr Probl Cancer 2005;29:326-331. 0147-0272/2005/$35.00 ⫹ 0 doi:10.1016/j.currproblcancer.2005.09.007
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values, beliefs, norms, and practice of individuals.9 Still, there are differences given differences in individuals’ personal experiences. Perspective greatly influences the assessment of pain. Physician’s rating of pain is most generally lower than that of the patients.11-14 The difference between patient’s and physician’s rating of pain has been found to be more disparate for expert physicians than novices. Both physicians and patients have rated pain lower when the cause was obvious compared with when it was not obvious. Male physicians rated female patients’ pain lower than that of male patients.14 The difference in pain ratings based on perspective can also be found with children in which the health care professional’s and parent’s ratings are quite disparate from the child’s. The parent’s rating, however, is more closely correlated with the child’s than that of the health care professional.15 A patient’s perception of their pain can be variable. When distracted, a patient may provide a lower rating of their pain than at times when not distracted. However, when faced with other anxiety-producing news, such as the diagnosis of cancer, the patient may provide a higher rating of their pain at that time. Does this make the validity of either of these ratings questionable? Our response is no. The pain is what the patient says it is at any given time. That the level of pain is either being decreased or increased by accompanying states of mind provides insights into how to best manage the pain. In the first situation, one could suggest that the patient use distraction as one means to deal with the pain. In the second situation, methods to manage anxiety could be proposed. Perspective and perception likewise influence the assessment of QOL. The patient’s perspective of QOL frequently captures the day-to-day impact of the disease. The clinicians generally focus on objective indicators of QOL, those that are most observable, such as physical function.5
Relevance of Patient Perspective when Measuring QOL Compared with Physical Endpoints QOL is not a concrete concept that is fully recognized by a visual inspection, as is the case with many physical endpoints. It is not as simple as looking at a laboratory value or observing the amount of difficulty an individual is having with walking. QOL requires an internal evaluation of the value of various aspects of one’s life and how they are being impacted. That evaluation is influenced by their culture and previous experiences. Thus, a proxy evaluation, such as that by a relative or physician, would result in a slightly different conclusion about the QOL of the individual. Curr Probl Cancer, November/December 2005
Proxy measures can be especially useful when it is unrealistic to obtain the patient’s perspective.5 Proxy assessments of physical dimensions are closer to that of the patient’s assessment than on psychosocial dimensions (median correlations on physical dimensions 0.60-0.70 and on psychosocial dimensions 0.50). The conclusion is that proxy evaluations from persons aware of the patient’s values can be useful, but are biased. The use of the patient’s perspective becomes increasingly important as the variable being measured becomes more abstract. For instance, blood pressure, although it may be affected by a variety of factors, is a relatively concrete physical measure. In contrast, assessment of pain becomes a combination of physical and subjective domains. This makes what may seem to some as a concrete physical measure, one that can be left open for interpretation. For example, physical parameters such as behaviors exhibited that are indicative of pain, including restlessness, muscle tension, and verbal signals, may not be present in some persons due to what is culturally acceptable, thus making proxy assessment inaccurate.
Including QOL Measurement in the Clinical Setting Evidence is accumulating that supports the importance of QOL as a treatment outcome. In fact, QOL had been a strong prognostic variable for survival in several studies.16-18 QOL data can be especially important when two treatment approaches have similar survival outcomes. With similar survival outcomes, changes in QOL will frequently drive the treatment choice.19 For example, a woman’s choice between mastectomy and breast conservation after a diagnosis of breast cancer provides similar survival outcomes, but each has implications for QOL that in turn influence the woman’s ultimate decision. For some women it is important to avoid the radiation therapy associated with breast conservation. For others, minimizing the changes to a breast is important. Even when survival outcomes are different, individuals may select a less effective treatment option due to the effects of an alternative option on QOL. The choice of prophylactic mastectomy for women at high risk for breast cancer is one example. Although this treatment may provide a high level of efficacy in preventing breast cancer, it has significant implications for QOL that must be considered in terms of the importance of the potential adverse effect to the woman. It readily becomes apparent that the availability of QOL data is essential for making a balanced and informed decision. It is also important to provide for the assessment of the individual’s QOL as a means of meeting the patient’s needs. It is possible that the gap between what we espouse theoretically about the importance of the 328
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patient’s perspective on their QOL and the lack of obtaining the patient’s perspective is a result of not knowing how to obtain the patient’s perspective on their QOL. One of the simplest approaches to assess QOL is to ask a person to rate their QOL on a 10-point scale that is anchored with words such as, the “worse possible QOL” on one end of the scale and the “best possible QOL” on the other end of the scale.20 The disadvantage of this approach is the inability to detect aspects that negatively affect QOL.4,10,21 This criticism can be addressed with follow-up for those with an impaired QOL to determine what is detracting from their QOL and what has been tried in attempts to reach optimal QOL. There is considerable variety in instruments available to assess an individual’s QOL. In a healthy population, some utilize a global instrument such as the SF-36.22 The SF-36 allows individuals to rate their own level of function on the domains of physical functioning, role-physical, role-emotional, pain, social functioning, mental health, vitality, and general health perceptions. More specific instruments can be used for individuals with an illness. For instance, the Patient-Generated Index23 allows individuals to list the areas most significantly affected by their condition. The individual then rates the extent to which each of those areas affects their life and the importance of improvement in each of the identified areas. Even more specific scales can be used for specific chronic illnesses. The FACIT24 allows individuals to rate their own level of function in relation to physical, social/family, emotional, and functional well-being. This series of instruments provides the ability to pick a version that is specific to a patient population, such as a specific type of cancer. The key to choosing an instrument for use in the clinical setting is to ascertain that it addresses issues that are of importance to the specific group of patients for which care is given. The instrument is administered to the patient before the clinician’s assessment. It may be mailed out in advance or the person completes it in the waiting room. The instrument is then scored and the results given to the clinician who uses that information as part of their preparation for assessing the patient’s condition. Measurement of QOL is discussed in more detail in other sections of this monograph.
NEWMED Example In designing a study, it is necessary for researchers and clinicians to understand the value added by assessing QOL from the patient perspective. Discussing what measures to use in the clinical trial is not the same Curr Probl Cancer, November/December 2005
as discussing what can be gleaned from patient-perceived QOL assessment. In the case of NEWMED, it is essential to select assessments that measure the patient’s perception of pain, mood, fatigue, and depression, as well as global QOL. One could argue that assessing the adverse events profile and performance status would be sufficient. However, we assert that these data would in no detail provide information regarding the impact NEWMED has on well-being from the perspective of the patient. For example, it is argued that fatigue is a measurable physical symptom, yet the measure does not necessarily correlate with the impact that fatigue may or may not have on the patient’s day-to-day living. Patient-perceived QOL data, even as a secondary endpoint, will be beneficial to future cancer patients contemplating the use of NEWMED. As researchers and clinicians, we can hypothesize the potential effects NEWMED may have on a patient’s QOL, but if the patient is not directly assessed, we will never know with any amount of certainty, and certainty is the value added.
Summary QOL is an important concept to measure. Although the clinician’s perspective is important in framing what is typical with any given situation, obtaining the patient’s perspective on their QOL is essential to fully address the needs of the patient. There are several easy approaches for integrating QOL assessments into the clinical setting.
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