Quality of life of patients with generalised malignant melanoma on chemotherapy

Sammanfattning: Background: A quality-of-life study (QOL) was conducted in parallel to a clinical trial to examine the impact of chemotherapy on the physical, psychological, social and overall functioning and well-being of the patients with advanced malignant melanoma on chemo-therapy. A tumour-specific questionnaire technique (EORTC QLQ) to evaluate patients' QOL, was studied and extensively validated. Moreover, information was gathered from care providers regarding opinions on ethical and psychological aspects of this particular treatment situation. Material: Between October 1987 and January 1991, 95 patients with generalised melanoma were examined. Attending nurses and relatives were included in the assessments. Furthermore, 93 individuals with hereditary risk and 123 patients with stage I melanoma were compared with the first 57 patients with advanced disease regarding emotional distress. At the official closure of the study, 45 professionals working at the Melanoma Unit participated in the staff-questionnaire study. Methods: QOL was assessed by a set of self-administered questionnaires, the EORTC QLQ-C36, a study-specific melanoma module and the Hospital Anxiety and Depression (HAD) scale. The nurses and relatives filled in appropriate versions. Clinical variables were obtained, ther from the multicentre clinical trial or from patient files. A staff study-specific questionnaire was developed. Results: Pretreatment results disclosed a relatively low symptom burden, good functioning anda high overall QL. Nine weeks later there had been a significant deterioration in performance status and one-third of the patients had succumbed to rapidly progressing disease. Patients still on treatment reported a significant worsening on all QOL aspects, except pain and emotional function. LOW correlations were found between physician-rated clinical outcome and patient reports, except for neurotoxicity, confirming that the physician-rated clinical outcome variables do not necessary measure the patient's QOL. Clinical and demographic variables were in the long run stronger predictors than patients' self-assessments, but the QOL measures added unique information. The psychometric analyses of the QLQ-C36 confirmed good face and internal validity, reliability, construct and external validity, responsiveness over time and ability to differentiate between clinical subgroups of patients. The same held true for the study-specific MM module. Despite perceived burden of treatment, very few patients revealed thoughts about stopping treatment. They valued treatment and communicated mostly with their family about side effects. Attending nurses both over- and underestimated several aspectsof the patient's QOL while relatives seemed to be more adequate proxy raters. The nursing staff was equally eager to treat and receive treatment as the doctors. The staff found their work meaningful and rewarding. Conclusions: The EORTC QLQ is applicable in patients with generalised malignant melanoma on chemotherapy, seems clinically relevant and adds information beyond the traditional biomedical parameters. Despite pessimistic results and perceived burden of treatment both patients and personnel advocated chemotherapy.