title: The meaning of quality of life and the effects of unrelated donor bone marrow transplants for chronic myeloid leukemia in adult long-term survivors.
abstract: Qualitative data, as part of a larger study, were collected to assess perceptions about quality of life (QOL) after bone marrow transplant (BMT) and its impact on long-term survivors who had undergone an unrelated donor bone marrow transplant. A sample of 28 survivors participated in the study. Quality of life was described in terms of "normality," enjoyment, and fulfillment with life: being psychologically and physically healthy, being independent, having family and relationships, having work, experiencing happiness, and having material support. There were many factors with which survivors found it difficult to cope: symptoms, frustration brought from the inabilities to function in life, family life, returning to work, and infertility. However, about 25% of the survivors reported a positive impact of the BMT on their lives. Main concerns about the future were related to health status, the long-term effects of the transplant, financial concern, infertility, the normalization process, and the family. These data confirmed that unrelated donor BMT patients do not have a different perception about their QOL than other BMT patients receiving autologous or allogeneic marrow transplants. Some of the issues that differed from the previous BMT literature included higher inability to perform daily tasks and dependency on others, adverse memories of the transplant, and concerns about the future. These areas should be the target of pretransplant interventions and the long-term psychosocial services provided to patients. As mentioned by the respondents, health care professionals could further improve their patients' QOL by providing counseling and psychologic support, education about the effects of the various treatments, and improved research in BMT treatment and side effects.
authors.affiliation: Faculty of Medicine, Department of Nursing, Chinese University of Hong Kong, Shatin, New Territories, Hong Kong.
authors.forename: A
authors.initials: A
authors.lastname: Molassiotis
authors.forename: P J
authors.initials: PJ
authors.lastname: Morris
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D016026:Bone Marrow Transplantation / Q000009:adverse effects / Q000523:psychology*; D015400:Clinical Nursing Research; D003376:Counseling; D005260:Female; D006304:Health Status; D006801:Humans; D015464:Leukemia, Myelogenous, Chronic, BCR-ABL Positive / Q000523:psychology* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D011788:Quality of Life; D012944:Social Support; D017741:Survivors