Systematic review
Quality of life after kidney and pancreas transplantation: a review

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Abstract

There is an increasing amount of data on quality of life (QOL) in most chronic illnesses; some of the instruments used are generic, but recently, there is a tendency to use disease-specific instruments. We propose that recipients of organ transplants be assessed routinely for QOL by means of the 36-Item Short-Form Health Survey or a disease-specific instrument; for compliance, by means of the Long-Term Medication Behavior Self-Efficacy Scale; and for psychological status, by means of the Beck Depression Inventory Brief Symptom Inventory or the Symptom Checklist. The widespread use of QOL data in recipients of organ transplants will increase accountability of service providers and eventually increase patient satisfaction because these instruments are patient reported.

Section snippets

Psychosocial assessment of patients for kidney transplantation

Kahan8 recently summarized selection criteria for transplantation as follows: “accepted notion of benefit” (medical need, life remaining, and posttransplantation QOL), “patient's rights” (based on the right of every patient to transplantation if they so wish), “cost-effectiveness” (on the basis of best economic outcome), and “scientific progress” (whether the patient's treatment will advance medical science). These concepts are designed to assist the physician in allocating scarce resources of

QOL in relationship to medical compliance

Psychosocial issues and compliance are discussed increasingly in relation to QOL. Traditionally, compliance behavior has been considered in terms of the physician's ability to influence the patient and the patient's willingness to respond. However, in an attempt to move away from connotations of the all-powerful physician and the powerless patient, there was a move to replace the term compliance with that of adherence and, more recently, concordance. Adherence and concordance play to the

QOL in relation to psychosocial well-being

Skotzko et al17 performed a survey to determine the views of the transplant community on psychosocial issues. They found overwhelming support for providing psychosocial support both pretransplantation and posttransplantation to increase patient rehabilitation. There also was broad support for substance abuse treatment programs for recipients of organ transplants; most respondents also acknowledged the impact of psychosocial factors on compliance, QOL, and survival. Respondents to this survey

Review of the literature

There are numerous studies examining QOL after kidney and pancreas transplantation. We searched MEDLINE, the Cochrane Library, EMBASE, Cinahl, PsycINFO, ASSIA, RCN journals, SERFILE 202, and World Information Nursing and the World Wide Web using the terms “quality of life and kidney transplants” and “quality of life and pancreas transplants.” Only articles in English were included. Priority was given to articles that were prospective and randomized and used controls and articles after 1995. We

Critique of the literature

The studies we reviewed used a variety of questionnaires; selection of a QOL instrument was dependent on the bias of the investigators, making it difficult to compare studies across centers. The majority of studies are retrospective and there are wide differences in cultural patterns, sample sizes, and durations of follow-up. Another problem with self-reported studies is the poor response from patients. None of the studies reported the effect of self-reported questionnaires on the patient's

Patient empowerment

There is an increasing trend to involve patients directly in treatment planning, which, in turn, may lead to increased compliance. However, there has been little legislative support for this position. Empowerment does not come about by some miraculous process of osmosis, but through the acquisition of communicative and behavioral competence on the part of both the staff and patient—skills that may be lacking in patients from lower socioeconomic groups, who might easily be overwhelmed by the

5-year prediction

An important issue is availability of organs. Griva et al20 from University College, London, UK, compared health-related QOL in 76 living related and 271 cadaveric organ recipients, looking at social, medical, and psychological improvements after transplantation. They observed improved emotional well-being in all patients. However, living related transplant recipients expressed greater levels of feeling guilt, probably because they continue to see the donors. In another such study from Japan,

Conclusion

We propose that all recipients of organ transplants be routinely assessed for QOL by means of the SF-36 or a disease-specific instrument; for compliance, by means of the LTMBS Scale; and for psychological status, by means of the BDI, BSI, or SCL-90-R (Table 5). Adequate funding should be provided for the additional expense in implementing a program of assessment and intervention in appropriate cases. Over time, we may be able to construct a universal instrument that will capture these 3

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