Quality of life in patients with malignant blood disorders : A clinical and methodological study

Abstract: The overall aim of this thesis was to evaluate and, improve measurements of, healthrelated quality of life (HRQL) in patients with malignant blood disorders. Patients undergoing autologous stem cell transplantation (SCT), long-term (>5 years) survivors of Hodgkin's lymphoma (HL) and a randomly selected control group were studied. Participants were evaluated with five well-known standardized questionnaires measuring aspects of HRQL and a novel individualized measure, translated and extended for this study: the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW). The majority of patients undergoing autologous SCT reported a rather good physical functioning during the first year of follow-up. Most impairment was rated in social function both before and after SCT. Most frequently reported symptoms were fatigue, appetite loss, dyspnoea and many patient described a worsened financial situation. High levels of post- traumatic stress symptoms were recorded, which were related to signs of anxiety and depression. The long-term survivors of HL, on the other hand, reported few problems related to disease and its treatment and an HRQL in parity with the control group though physical health, as measured with the Short Form 12 (SF-12), was diminished in the patient group. The results of the SEIQoL-DW showed that the areas viewed as most important in life (>50% of patients and controls), were family, personal health, work and relations to other people. Thoughts and worries concerning disease, fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL. Sixty-six percent of the survivors reported a change in their view of life and of themselves. This initial validation of the extended Swedish version of SElQoL-DW showed it to be a valuable tool in evaluation of HRQL in HL survivors and controls. The results are interesting in revealing both positive and negative HRQL aspects of the disease and its treatment. Important factors influencing perception of HRQL are disease stage, Sense of Coherence and the financial situation.