Promoting the quality of life of organ transplant patients

The quality of life (QOL) challenges facing organ transplant patients are well documented, with decades of extensive research showing that individuals awaiting organ transplantation experience significantly lower QOL compared to transplant recipients and the non-transplant population (Denny & Kienhuis, 2011). Approximately 1,600 Australians are currently awaiting an organ transplant, with 1,009 individuals receiving transplants from 337 donors annually (Excell, Hee, & Russ, 2011). Transplant candidacy, therefore, is an understandably difficult experience, with QOL compromised with regards to limited daily activities, restricted social life and difficulties with employment. Further, the uncertainty of receiving an organ has been posited as contributing to the development of psychological problems and lower QOL among transplant candidates, with up to 50 per cent of patients affected by adjustment disorders, depression and anxiety (Olsbrich, Benedict, Ashe, & Levenson, 2002).

With current transplant wait times ranging from 1–7 years depending on the type of organ required, psychological intervention may have enormous potential benefit for transplant patients’ general wellbeing and QOL. However, psychologists are not always represented on transplant teams, which are usually comprised of specialists from surgery, internal medicine, nursing and social work. The extensive interactions between health professionals and patients are an important contributing factor to QOL (Bezjak et al., 2001), so there is a need to understand health professionals’ conceptualisation of QOL issues and the way QOL is considered and applied in clinical practice with transplant patients. Armed with this information, psychologists can provide guidance and education to health professionals regarding the promotion of transplant patients’ QOL.

This article presents the results of an exploratory study to assess health professionals’ attitudes and behaviours related to QOL and the implications of this for the needs of individuals awaiting organ transplant.

Health professionals’ views of transplant patients’ QOL issues

A study of 41 health professionals who work in the transplantation field within Australia – including nine doctors, 26 nurses, and six allied health professionals – was undertaken to ascertain their views on QOL. Participants were mostly female (74%) working in paediatrics (66%), adult (27%) or combined paediatric/adult settings (7%). With an average age of 40.5 years, health professionals’ years of experience ranged from less than ten years (32%), ten to twenty years (34%), twenty to thirty years (24%), to greater than thirty years (10%).

Respondents completed an adapted version of the MD-QOL (Bezjak et al., 2001), which has been previously used to explore the QOL perspectives of oncology health professionals. The MD-QOL quantifies health professionals’ views on QOL in the three main areas of attitude (concept of QOL, opinion of QOL instruments, benefits and drawbacks of QOL assessment), willingness (intention to use QOL information), and behaviour (extent of formal and informal use of QOL information in clinical decision-making), with 47 items rated on a four-point scale.

Results revealed inconsistencies between health professionals’ attitudes toward QOL issues, and their willingness and actual use of QOL information in clinical practice. Overall, health professionals reported very positive attitudes to QOL issues, however willingness and behaviour regarding use of QOL information were rated lower. Responses to individual MD-QOL items suggests that health professionals recognise the importance of transplant patients’ QOL issues, with most rejecting the notion that QOL is a passing fad that will diminish over time and disagreeing with the statement that prolonging survival with poor QOL is still a successful outcome.

Responses regarding willingness to use QOL information were less consistent: most (84%) stated that they were unlikely to increase use of QOL data in the care of future patients, however, there appeared to be strong support for health professionals to be trained in the measurement of QOL issues. In terms of actual behaviour related to use of QOL information in clinical practice, most respondents (78%) indicated infrequent use of formal QOL measures. Less than a quarter reported encouraging patients to complete QOL questionnaires, with most health professionals relying on informal measurement through clinical experience. While more than half of health professionals surveyed reported often reading studies reporting QOL results, fewer reported using QOL research to determine treatment recommendations or to modify practice patterns.

Taken together, these findings suggest that recognition of the importance of QOL issues for transplant patients is not yet reflected in health professionals’ clinical practice. Results indicate that factors influencing the transition from a positive attitude towards QOL issues to implementation in clinical practice include demands on resources, and difficulty with interpreting published QOL results. However, the finding that 83 per cent of respondents support the training of health professionals in QOL issues and measurement has promising implications for the future consideration of transplant patients’ QOL issues.

Defining quality of life

In addition to completing the MD-QOL, health professionals also provided a definition of QOL. The definitions were grouped thematically (see Table 1), revealing understandings of the QOL term that varied considerably from the World Health Organisation’s widely used definition of QOL as a broad-ranging and multidimensional concept incorporating “an individual’s perception of his/her position in life in the context of the culture and value systems in which he/she lives, and in relation to his/her goals, expectations, standards, and concerns” (Orley & Kuyken, 1994, p. 43). Such inconsistent definitions of QOL may lead to substantial differences in the way in which QOL is assessed and discussed in clinical practice.

Health professionals considered a broad range of factors in defining QOL, including enjoyment of life, functionality, and illness and pain. The identification of QOL as being related to physical illness or pain is somewhat contrary to the definition of QOL being based on more than simply the absence of ill health or disease, with responses including “without the limitations of ill health”, and being related to “being healthy enough” and dependent upon “limited capacity”. Functional status, including ability to work or attend school, was frequently commented upon, suggesting that health professionals use this social indicator as a marker of good QOL. One health professional defined QOL as the ability to “partake in… normal activities such as school, friendships and family life”, while others noted QOL to be related to doing “what’s required on a daily basis to sustain life comfortably”, “being able to do the things in life… they want”, and “participation in desired activities”.

Fewer noted the subjective nature of QOL. Two respondents clearly stated QOL to be “a person’s subjective view of their life” and based on “an individual’s perception”. Another explained the potential of the subjective nature of QOL to cause discrepancies between individuals’ ratings of the impact of disability or ill health. Health professionals infrequently noted the multi-dimensional nature of QOL. One described QOL as “physical, psychological and social wellbeing”, while another described QOL as “a measure of a person’s psychological and physiological health”.

Table 1. Health professionals'definitions of quality of life

Note - most responses included multiple descriptors of QOL

Concluding comments

This exploratory study has demonstrated the usefulness of considering health professionals’ attitudes and behaviours related to QOL. Inclusion of this perspective on QOL is helpful in gaining a wider understanding of the applied concept of QOL within the field of organ transplantation, and may increase our understanding of the treatment and management of organ transplant patients’ psychosocial needs.

The preliminary findings presented here suggest that health professionals hold transplant patients’ QOL issues in high regard and recognise the importance of patients’ QOL. However, health professionals differ in their understanding of the QOL term, and also have distinct ideas regarding the benefits and drawbacks of informal and formal QOL assessment. While further research with a larger and more representative sample is needed to elucidate this topic and further define ways in which to encourage assessment and treatment of QOL issues, it is hoped that the largely positive attitudes of health professionals towards QOL issues will lead to greater recognition of transplant patients’ QOL issues, thus enabling optimal QOL experiences for individuals awaiting transplantation.

The principal author can be contacted at [email protected]