Quality of life and its determinants among allogeneic haematopoietic stem cell transplantation patients and the Finnish population

The present study explores, for the first time in Finland, the global quality of life, the healthrelated quality of life, and associated factors among allogeneic haematopoietic stem cell transplantation (SCT) patients, as well as problems and stressful issues related to blood diseases and allogeneic SCT. Furthermore, the global quality of life and its determinants are also studied among the Finnish population. This cross-sectional study is based on two data sets, one representing all the allogeneic SCT patients transplanted at Helsinki University Central Hospital in 1988-1997 the other representing the Finnish population (FINNRISK -97). The results of this study support the premise that most of long-term allogeneic SCT patients express satisfaction with their global quality of life and describe themselves as living without significant physical, functional, emotional, and social problems related to their disease or SCT treatment. However, a small proportion of the patients examined herein continued to have physical problems even years after the SCT. Depending on the symptom evaluated, from one to eight per cent of the patients often or very often experienced some physical symptoms. It was found out that physical well-being, educational level, age at SCT, and social support had an effect upon the global quality of life among the SCT patients. However, the effect was related to follow-up time. During the first three years since the SCT, physical well-being was the most important determinant of the global quality of life. It was also found that those undergone the transplantation at the age of more than 40 years were more satisfied with their life than those undergone the procedure under 40 years of age, respectively, when the followup time was from one to three years. Thus, patients receiving a transplant at a younger age appear to need more emotional guidance and counseling. On an average, physical well-being was shown to improve after the first year since the transplantation. However, the present results indicated that important gender differences exist among allogeneic SCT recipients, which need to be addressed to when designing posttreatment intervention programs for SCT recipients. The females indicated more tiredness and sleeping difficulties and were less often satisfied with their sexual life than the males. Stress factors were studied using concept mapping methodology. The analytic method employed captures direct patient perceptions, allowing the patient to define the domains under investigation. Eight primary stress clusters were revealed. "Change of life and long lasting treatment"; "side-effects", and "distress related to treatment outcome and physiological status" were perceived the most stressful dimensions. " During the treatment also "worries about the well-being of the family" and "excitement related to blood counts" were perceived highly stressful. Some of the stressors generated by the patients were unique and gave important inside information to be used in clinical settings. Among the Finnish population good perceived health, good functional status, satisfaction with family life, with life achievements, with economical situation as well as lack of depressive symptoms and anxious mood indicated good global quality of life. The results regarding the relationship between the global quality of life and its dimensions suggest that the emotional state should not be studied as one independent dimension of the quality of life but, rather, as a mediator variable greatly influencing the process how causal indicators of the quality of life are translated into the global quality of life.