Health-related quality of life in chronic refractory reflex sympathetic dystrophy (complex regional pain syndrome type I)

The aim of this study was to find out which aspects of health-related quali ty of life (HRQL), measured with generic instruments, are important to pati ents with reflex sympathetic dystrophy (RSD) affecting the arm or leg The S ickness Impact Profile 68 (SIP68), the Nottingham Health Profile (NHP), and the EuroQol-5D (EQ-5D) were completed by 54 Patients suffering from RSD (3 3 arm, 21 leg). The scores of the three Questionnaires for patients with an affected arm or leg are presented. Aspects relevant to Patients with RSD O f the arm include the NHP1 dimensions of pain (mean score; 63%), sleep (58% ), and energy (45%), and the EQ-5D dimensions of Pain (67% extreme), usual activities (76% some problems), and self care (76% some problems). Aspects relevant to patients with RSD of the leg include the SIP68 dimensions of so cial behavior (51%) and mobility control (46%), the NHP 1 dimensions of pai n (mean score: 86%) mobility (54%), energy (53%), and sleep (52%), and the EQ-5D dimensions of mobility (81% some problems), Pain (71% extreme), and u sual activities (71% some problems). The study showed that applying generic HRQL instruments and measuring treatment effect with the dimensions scorin g high provides a responsive instrument which at the same time gains inform ation concerning dimensions not maximally responsive to a specific disease. Some dimensions which, on the basis of their label, might be expected to b e important were found not to be so. After using this approach, clinicians can more directly focus treatment on specific areas that have been shown to affect a patient's HRQL. (C) U.S. Cancer Pain Relief Committee, 2000.