Quality of life in survivors of bone marrow transplant

COMMENTARIES Susan Holmes,Adrian Coyle, Evelyn Thomson Journal of Cancer Nursing(I 997) I 106-116 Quality of life in survivors of bone marrow transplant Bone marrow and peripheral blood stem cell transplantation have become increasingly popular treatment modalities in recent years. Although medical advances may mean that we are now able to save more lives, the long-term quality of life after bone marrow transplantation (BMT) has only recently become an area of expanding research. The article by Holmes et al is therefore extremely timely. The authors raise issues of offering patients choice, both in terms of informed consent for treatments and in ensuring that patients have control over making decisions during the pre- and post-transplant phases. Several patients felt that being healthy, both physically and mentally, was an overriding factor. For other patients, the absence of physical disease is considered more important than being normal. The importance of assessing patient needs and interpreting their level of adaptation in order to assist them in coping in a way that is appropriate to them will involve nurses in developing holistic, individualized and creative care packages. Typically, post-hospital care will involve the co-ordination of health and social services, many of whom may have very little insight into the less obvious sequelae of lassitude, fluctuating mood and emotional pain in someone who, on the face of it, appears to be a relatively young and fit individual. Holmes et al's testimony that one of their subjects described a life of misery, disability, loneliness and decline is particularly moving to professionals, whose focus of care tends to be limited to brief hospital visits. The need to co-ordinate care may fall to BMT support nurses and in-patient haemato-oncology nursing staff. However, the impact and contribution of this upon all members of the health-care team, both in hospital and in the primary sector, calls for a much greater awareness of the long-term complications of this sort of therapy. The difficulty that many BMT patients experience in social readjustment with their family and friends is often overshadowed by the curative aims of treatment. Health-care professionals need to help patients to reappraise their priorities, attitudes and relationships with others; and, just as importantly, to assist family members and close friends to alter their perception that discharge from hospital is the end of the recovery process. When asked the question, 'Would you have a bone marrow transplant again, if you were to have your time over', only three patients responded with unequivocal affirmative answers. This implies as much about the quality of life of BMT survivors as it does about the need to match expectations with reality by providing timely information before transplantation in a way that is appropriate and conducive to the individual's learning needs. Holmes et al's findings offer an encouraging view of life after BMT; nevertheless, an awareness of how normality is affected by BMT and the potential naivety of assuming that patients will return to their preillness level of functioning after transplant, serves to remind us of the importance of assisting patients to adapt to the effects of survival. The research team highlight the uncertainty of how long remission will last, the de-stabilizing effect upon interpersonal relationships and the unlikelihood of starting a family. The ongoing relationships with health-care professionals, particularly nurses, even when several years have elapsed since transplant, reinforces the importance of follow-up, even when medical intervention at these times seems less vital. Although this work identifies many common features in patients' quality of life after BMT, the important message from this study is that professionals must be sensitive to individual differences in the short- and long-term. Collaborative plans between health- and social-care professionals must be devised, implemented and evaluated in order to meet the very complex needs of BMT survivors, not merely in the period immediately following discharge but for many years thereafter. Nurses, in particular, have a duty to ensure that patients do not suffer unnecessary harm as a direct consequence of therapy which, although saving their life, may cause irreparable damage to the quality of that life. Furthermore, only by engaging in interpretative qualitative research of this kind can researchers be expected to gain a real insight into patients' experiences.

Noel Scanlon BSc, RN, PGDE, PGDA, Lecturer Practitioner Oxford Radcliffe Hospital and Oxford Brooks University, UK

Journal of CancerNursing I (3) I 17- I 18 © Pearson Professional Ltd 1997