Quality of Life

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During recent public debate about whether insurance companies should pay for drugs that improve sexual performance, some financial analysts and insurance company executives dismissed sexual function as a "quality of life issue," as distinguished from a "medical necessity."* This use of quality of life to denote recreation or enrichment shows confusion — and perhaps sows confusion. The analyst's implication was that quality of life is a luxury that health insurance need not cover. He has it backwards. Feeling well and being able to meet one's social obligations, including work, child rearing, and so forth, is a necessity, not a luxury. For many people, it is a sufficient reason to take or not take medicines. Sexual functioning is part of quality of life, and its importance depends on the patient. Whether improving sexual functioning is worth the potential expense to the insurance company and its members is a fair question, but it is a separate question from quality of life.

Quality of life (QOL) is the generalization of a person's ability to live his life, including its physical, mental, and spiritual dimensions. This includes somatic (bodily) sensations and psychological state as they are reflected in ability to carry out occupational and other social functions. Quality of life depends on a person's state of health, in addition to many other psychological, social, economic, and political factors.

According to the World Health Organization, a state of health refers to complete physical, mental, and social well-being and not merely the absence of disease. A somewhat more straightforward definition is the proper functioning of the whole organism. So QOL is a part of these definitions of health.

Health-related quality of life (HQOL) is an attempt to narrow the concept to the effects of wellness or illness and its therapy on quality of life.5 HQOL is partially subjective and depends in part on a person's expectations. However, some parts of HQOL are objective. A person who cannot stand up without getting dizzy from postural hypotension (a temporary drop in blood pressure), or a person with untreated severe pain, is experiencing a physiological phenomenon that is just as definite as many diseases. It is subjective in the sense that the patient feels it, but objective in the sense that it can cause the patient to avoid some work or recreational activities, and can have sequelae such as injury from a fall. The importance of each dimension varies from person to person and from time to time. However, it seems that there is a cross-cultural agreement about certain domains of health-related quality of life. These domains are:

• Physical (symptoms, physical limitation, days in bed, pain, physical well-being, energy, vitality)

• Mental (cognitive function, concentration)

• Emotional and psychological (fear, depression, psychological well-being, emotional control)

• Social (personal relationships)

* Ginsberg, T., N.J. to Pay for Viagra® on Limited Temporary Basis, Philadelphia Inquirer, June

TABLE 4.2

Dimensions of the SF-36

Dimension

Examples

Vitality

General health perception Physical role

Feeling full of pep, tired

Sense of getting sick a little easier than other people; sense of excellent health; expectation that health will worsen Reduction in the amount of time spent on work or other activities; difficulty performing work or other activities (for example, it took extra effort) Bodily pain during the past weeks; pain interfering with normal work (including both work outside the home and housework)

Ability to engage in activities, e.g., bathing or dressing oneself; bending, kneeling, or stooping; carrying groceries; moving a table, pushing a vacuum cleaner, bowling, or playing golf; walking a block, several blocks, a mile; running, lifting heavy objects, participating in strenuous sports Being a very nervous person; feeling down in the dumps, downhearted, blue; feeling calm and peaceful; being a happy person

Less time spent on work or other activities; accomplished less than you would like; didn't work as carefully as usual Physical health or emotional problems interfered with normal social activities

Bodily pain

Physical functioning

Mental health

Emotional role

Social functioning

Source: Medical Outcomes Trust: How to Score the SF-36 Health Survey, 1994.

• Role (ability to perform daily work)

• General health perception (current perception about health, expectations)

HQOL measurements are well established in outcomes research. They may also be useful in clinical practice, although this use is still very much in development. In outcomes research, scientifically valid and reliable questionnaires have been developed to measure HQOL in groups of people. One of the best-established general HQOL instruments is the Medical Outcome Study Short-Form 36, usually abbreviated MOS SF-36 or just SF-36. The SF-36 measures eight underlying dimensions of HQOL, as shown in Table 4.2.

Different diseases and treatments seem to affect quality of life in different, specific ways. For example, some of the questions useful to evaluate the effect of arthritis and arthritis therapy on HQOL should be different from the questions that would be useful for a person with asthma. However, the basic dimensions are essentially the same. An example of a disease-specific HQOL instrument is Hyland's Living with Asthma Questionnaire (LWAQ). The underlying dimensions of this are shown in Table 4.3.

Health care programs can use HQOL questionnaires to evaluate their overall impact and the state of well-being of their patients or members. Clinicians can use HQOL questionnaires to assess an individual's quality of life. This use is not as well established as their use with populations. An

TABLE 4.3

Dimensions of the Living with Asthma Questionnaire

Dimension

Examples

Seriousness Would it make any difference if I forgot my inhaler?

Does asthma makes a difference in the way I work? Not bothered by asthma. My asthma is not a serious health problem. Drugs Having to use an inhaler is a nuisance.

I worry about the long-term effects of asthma drugs. Leisure Asthma limits the type of vacation I can take.

I miss out because there are some sporting activities that I cannot join.

Consequences I sometimes let people down because asthma stops me from doing something I agreed to do. There are times when I have difficulty getting around. I sleep badly because of my asthma. I tend to cough a lot at night.

I can walk up one flight of stairs without stopping. I sometimes feel frustrated sexually because of my asthma. Affect (emotions) I don't feel in control of my asthma.

It is difficult to do some activities Like simple repairs. My asthma makes me feel so helpless. I feel inadequate because of my asthma. I feel in charge of my life. I feel depressed because of my asthma.

Source: Adapted from a shortened version of LWAQ from Ried, Nau, and Grainger-Rous-seau, Qual. Life Res., 8, 491, 1999. The LWAQ was developed by Hyland, Fennis, and Irvine (see Appendix 2).

individual's interpretation of a specific question could be different from the intended interpretation. However, most scales have more than one question. Also, an HQOL instrument can be used with discussion or dialog, as described in Chapter 10. The clinician could follow up certain responses to get a clearer idea about problems, their meaning to the patient, and possible solutions. Furthermore, the underlying dimensions are a useful framework for guiding a clinical dialog and for documentation. For example, Mr. Diehl's comments seem to refer to the vitality and either physical functioning or social functioning dimensions of SF-36.

HQOL problems may represent clinical problems — specifically drug therapy problems (DTP), as described in Chapters 3 and 10. Mr. Diehl seems to be describing an actual DTP — although his comments about lack of energy and concerns about impotence may need clarification. A clinician, say the pharmacist, Ms. Piazza, could connect the patient's illness experience to resolvable DTPs. In this example, Mr. Diehl is mentally connecting his illness experience to drug therapy. However, his interpretations may be incorrect. Although his beta-blocker can cause fatigue and impotence, Mr. Diehl may be attributing symptoms to his drug therapy that actually have another cause, e.g., his hypertension, an undiagnosed intercurrent disease, or even his relationships at home or at work.

Understanding the relationship between drug therapy, clinical effects, and HQOL effects can be difficult. Particular caution would be necessary about whether the problem is known to occur in similar circumstances and whether it has a plausible relationship to the patient's therapy.

Quality-of-life assessment by health care providers is necessary in order for them to understand their patients' needs and provide appropriate care, especially when:

• The burden of therapy (side effects, etc.) could be (or seem to the patient) worse than the benefit.

• A therapy will last a long time, e.g., to control a chronic disease.

• Two regimens would have approximately equivalent clinical effectiveness, but different side effects or other burdens for a patient.

• A regimen is palliative and not curative.

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