Individual quality of life of patients undergoing autologous peripheral blood stem cell transplantation

Background. Most quality-of-life (QoL) studies in autologous Peripheral Blood Stem Cell Transplantation (PBSCT) are descriptive and concentrate on symptom severity and functional deficits. The aim of this study is to compare individual QoL (iQoL) with health-related QoL (hrQoL) and functional status of patients before high-dosed therapy/PBSCT. Patients and methods. Multiple Myeloma, non-Hodgkin's Lymphoma and other tumor patients were asked to complete the following measures before high-dosed therapy/PBSCT: the European Organization for Research and Treatment of Cancer (EORTC) Quality-of-life Questionnaire Core 30 (QLQ-C30), and the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW), a patient-generated instrument which allows the patients to nominate the five most important domains (cues) for their present QoL. The SEIQoL-DW assessment generates: (1) a global QoL score (SEIQoL-INDEX), calculated as Sigma(levels x weights); (2) the current overall QoL, rated on a visual analogue scale (VAS). Additional measures included demographic data, clinical disease status of remission and Karnofsky's index. Results. Seventy-nine patients completed both types of questionnaires. The QoL domains nominated by the patients were assigned to groups (aggregated cues), the most frequent of which were family (89%), hobbies/pastimes (74%), health (physical, including mobility) (70%), profession/occupation (51%), social life/friends (47%) and marriage/partnership (33%). There was no correlation between the SEIQoL-DW total scores and the EORTC QLQ-C30 scale or the Karnofsky index. Conclusion. Individual QoL as assessed by the SEIQoL-DW is unrelated to standard health-status measures such as the EORTC QLQ-C30 or the Karnofsky index. Patient-perceived iQoL in PBSCT seems to depend largely on areas others than health and physical functioning, with the family playing a prominent role. Copyright (C) 2003 John Wiley Sons, Ltd.