Chronic Illness And Quality Of Life Research Paper

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1. Background

Increased longevity and the development of sophisticated health care technologies and treatments mean that people today live with chronic health conditions over extended periods of their lives. Quality of life (QOL) has become an important goal of treatment and marker of success in health care interventions in chronic illness generally. In many disorders, e.g., osteoarthritis, health interventions will have little impact on mortality statistics but great potential for reducing disability and increasing QOL.

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QOL research first developed in cancer settings where the balance of quality and duration of life became a key concern in decisions to use novel treatments with very serious side effects and only partial efficacy. However, over the past 20 years there has been a burgeoning of research activity in every major chronic illness category. This is evident for different diseases at various structural levels. For instance, the US research funding agency, the National Heart Lung and Blood Institute, require almost all clinical trials and many epidemiological studies they fund to have a QOL component. In rheumatology, there is an international, professionally endorsed cooperative called OMERACT (Outcome Measures in Rheumatoid Arthritis Clinical Trials). They seek to improve QOL outcome measurement through datadriven interactive consensus. In cancer, the European Organisation for Research on the Treatment of Cancer (EORTC) has been established by interested professionals. They have developed a core QOL measure and disease-specific modules for various types of cancer. To the extent that QOL assessment reflects consideration of aspects of these diseases beyond the biomedical, QOL assessment reflects the increasingly biopsychosocial perspective in modern health care.

2. Uses Of Quality Of Life Assessment In Chronic Illness

QOL research in chronic illness has policy, treatment evaluation, descriptive, and individual clinical uses. There is now a vast literature on, and compendia of, instruments for this very wide set of circumstances and health conditions (e.g., Bowling 1997). At a policy level, initiatives to develop QOL assessment are concerned with means to identify those components of the healthcare system which are most effective in achieving good health outcomes. The Medical Outcomes Study is the major example of this approach. As part of a two-year prospective study to identify the association of reimbursement aspects of a health funding system with health outcomes in the US, a health-related QOL (HRQOL) was devised. The most widely used version, the short-form 36-item questionnaire (SF-36) was developed as a generic HRQOL instrument which could be used with the general population as well as patient groups (Stewart et al. 1989). The SF-36 has eight dimensions: physical functioning; role limitations because of physical health problems; bodily pain; social functioning; general mental health; role limitations because of emotional problems; vitality, energy, or fatigue; and general health perception. Items on each dimension are weighted so that each scale adds to 100 points, with higher scores indicating better health. Thus health profiles across the eight dimensions can be easily compared in graphic form across different disease or treatment groups. For SF-36, individuals rate their own health status. A different approach has been tried at the general population level in the State of Oregon, USA, to assist the public in prioritizing medical treatments for inclusion in publicly funded health care. Here, people were asked to rate the hypothetical impact of various levels of symptoms and restrictions as a way to create a hierarchy of levels of challenge to QOL. However, it has not proven possible to date to develop a system whereby the public are willing to withhold certain treatments from patients on the basis of lesser clinical or QOL benefit.

Much of the work using QOL instruments in chronic illness has been to evaluate the QOL impact of differing types of treatment, e.g., comparing medications. In this formulation, QOL is seen as a dependent variable. Treatment comparisons are usually made on a combination of generic and disease-specific QOL instruments to cover the range of dimensions in which one intervention may differ from another in impact. In priority terms, QOL is seen on a continuum. It is positioned after efficacy and safety of the treatment and before or after cost-effectiveness, depending on the costs and condition under consideration. One merit of this approach has been to illustrate the sometimes very differing perspectives of professionals and patients. For instance, innovative limb-sparing treatment for cancer was found to result in poorer QOL for patients than the traditional amputation option (Sugarbaker et al. 1982). This finding was subsequently used to refine treatment such that initial difficulties with the limb-sparing approach could be removed and it was then subsequently offered as the better QOL option.

QOL research has provided a large descriptive body of research outlining the experience of various health conditions. This work is of benefit to professionals, patients, and the public understanding the typical HRQOL challenges in different health conditions; e.g., the SF-36 has been used to provide a HRQOL profile of nine common chronic medical conditions (Stewart et al. 1989). From this we can see that cardiac conditions such as myocardial infarction and congestive heart failure have a greater overall impact on HRQOL than do others such as diabetes.

A final use of QOL assessment is to facilitate decision making for the individual patient. While some instruments such as the Dartmouth Primary Care Cooperative Information Project (COOP) charts have been developed with clinical settings and ease of administration and interpretation as a priority, the evidence is that there is little formal QOL assessment in this format at present. This is so despite significant professional support for the broad concept of QOL assessment in clinical practice.

3. Differing Perspectives On Quality Of Life: Needs Versus Wants

Quality of life has been generically defined as the capacity of an individual to achieve their life plans or the difference, at a particular point in time, between the hopes and expectations of an individual and their present situation. In Calman’s (1984) definition, a small difference or ‘gap’ is commensurate with a good QOL. He proposes that the gap is widened by experiences such as illness and that it can be reduced by improving the present situation or by reducing the person’s hopes and expectations to a more ‘realistic’ level. The World Health Organization (WHO) definition acknowledges possible cultural, as well as individual, differences in the understanding of the concept of QOL. The WHOQOL instrument is based on a set of five domains: physical function; emotional function; social relationships; levels of independence; and environment. While core domains have been demonstrated to be relevant across cultures, the individual facets and items to assess these domains are developed within cultures. Thus while the domain of independence will feature in both British and Indian versions of the instrument, the particular items to best reflect that domain may differ. The WHOQOL instrument also illustrates the multifaceted nature of QOL; working capacity and vitality fatigue might relate to work life from the physical function domain while working environment and transport would relate to work from the environment domain. QOL has also been defined more narrowly in a health-related context (HRQOL). HRQOL provides more focus on those specific aspects of life function likely to be influenced by illness although there is debate about how to differentiate health-related and non-health-related aspects of QOL.

Underlying most definitions of QOL, although usually not articulated, is one of two philosophical perspectives—the ‘needs’ or the ‘wants’ approach to QOL (Browne et al. 1997). The needs approach views QOL as the extent to which universal human needs are met. Many HRQOL instruments conform to the needs approach: the themes, questions, and question weightings used are standard and established independent of the person being assessed. The wants approach allows for a definition of QOL using themes, questions, or question weightings determined by the individual being evaluated. The methodologies used to achieve the wants approach are very varied and include content analysis and repertory grid. These measures typically do not limit the focus of enquiry to health and it is with these assessments (which usually focus more on perception than function) that there are findings of high levels of QOL in groups with major chronic illness as discussed in the next section.

4. Challenges To QOL Assessment In Chronic Illness

One major challenge relates to the comparison of professional and patient perspectives on patient QOL. As reviewed by Sprangers and Aaronson (1992), professionals are poor judges of patient QOL. Moreover, professionals consistently rate patient QOL as poorer than do patients. Where family members are involved in ratings, their views are intermediate. There is little understanding of the processes that facilitate patients to develop or maintain a reasonable QOL in the face of what others define more negatively.

A second complementary challenge arises from comparative QOL assessment where instrument use allows comparison with the general population. Many of these studies find little difference in QOL between ‘healthy’ individuals and those with serious health conditions; both groups reporting high QOL (Allison et al. 1997). Such study comparisons differ depending on the wants versus needs approach taken to assessing QOL as discussed in the previous section. Interesting work in the cancer area shows how patients with serious cancers, when compared with orthopedic patients and matched healthy controls, focus away from health issues in order to maintain a good level of life satisfaction (Kreitler et al. 1993).

One way to address both of the challenges outlined is to see QOL as having a trait or homeostatic dimension such that individuals ‘reset’ their evaluative framework in adversity to recreate an appropriate QOL level for themselves. Diener (2000) discusses psychological perspectives on adaptation and goal setting relevant to this issue. The practical challenge when developing this understanding is how to use the knowledge to promote psychological growth in the context of a chronic health condition.

5. Conclusions And Outlook

To date, social and behavioral scientists have made major contributions to QOL assessment in chronic illness on a scale of cooperation with the medical sciences that is probably unique. They have done so in ways that reflect the needs wants dichotomy of approaches. Many have provided psychometric skills within a largely biomedical framework to address challenges such as increasing responsiveness to change in evaluative research instruments (e.g., McGee et al. 1999) or in developing markers to identify clinical as distinct from statistical significance with HRQOL instruments (e.g., Juniper et al. 1994). The aim of the latter is to be able to use HRQOL scores in much the same manner as one would use blood pressure or body temperature readings to determine what course of action to take and when to do so. Others have been concerned with methods of documenting the salient and dynamic features of QOL for individuals; this has involved both qualitative and quantitative methods from a more phenomenological perspective. The challenge for the coming decades is to find some reconciliation between these two perspectives. In this way QOL assessment can be better used to direct services at individual and societal levels while expanding our understanding of how QOL is developed, maintained and altered as necessary through the course of chronic illness and its treatment.


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