High health-related quality of life among long-term survivors of childhood acute lymphoblastic leukemia.

BACKGROUND: Health-related quality of life (HRQoL) was assessed in a cohort of long-term childhood acute lymphoblastic leukemia (ALL) survivors. PROCEDURE: Rand-36-Item health Survey (RAND-36) was used to assess subjective HRQoL in 74 survivors of ALL an average of 20 years after the diagnosis. Cranial irradiation had been administered to 46 of the survivors, while 28 survivors had solely been treated with chemotherapy. The control group consisted of 146 healthy young adults selected from local population registry. Survivors were examined by a physician and late effects were graded using the Common Terminology Criteria for Adverse Events (CTCAEv3). RESULTS: ALL survivors achieved significantly higher scores than the controls on three of the eight HRQoL subscales; role limitations due to emotional problems (P = 0.030), mental health (P = 0.030) and vitality (P = 0.004). In comparison to controls, survivors with a follow-up of more than 20 years had significantly higher scores on vitality (P = 0.006) and mental health (P = 0.011). Survivors with severe (grade 3 and 4) late effects scored significantly better than controls on vitality (P = 0.043) and mental health (P = 0.040). Patients who had been treated for an ALL relapse and had received the most intensive chemo- and radiotherapy had significantly higher scores on mental health (P = 0.004) and vitality (P = 0.004) than the controls. CONCLUSIONS: Long-term survivors of childhood ALL reported equal or better HRQoL in RAND-36. Higher HRQoL scores were associated with more severe late effects and intensive therapy. Our findings support the idea of response bias.

Functioning and preferences for improvement of health among patients with juvenile idiopathic arthritis in early adulthood using the WHO ICF model.

OBJECTIVE: To evaluate functioning and preferences for health among young adult patients with juvenile idiopathic arthritis (JIA) and controls. The WHO International Classification of Functioning, Disability and Health (ICF) was used as a framework. METHODS: The patient files of a rheumatology hospital were screened to identify patients with juvenile arthritis born 1976 to 1980. Functioning was measured by the Finnish version of the Multidimensional Health Assessment Questionnaire (MDHAQ) within the framework of the ICF. Preferences in improvement of health were measured by the Finnish version of the Arthritis Impact Measurement Scales 2. Age and sex matched controls from the community were selected from the Finnish population registry. RESULTS: In all, 123 patients with a mean age of 23 (SD 21-26) years participated in the followup study. The mean time from diagnosis to followup was 16.2 years. Among them, 35% (n = 43) were in remission at followup. Lower levels of functioning for 3 ICF components were found in patients with active disease compared to controls. JIA patients with active disease had more pain and lower levels of mobility, self-care, and domestic and social life compared to controls. Patients with active disease differed from those in remission with pain in preferences for improvement of health. CONCLUSION: Patients with active disease need active treatment and rehabilitation to maintain functioning and decrease pain. The ICF offers a promising model to examine the outcomes of adult patients with JIA. Application of the MDHAQ is supported by our evaluation studies in young adults with JIA.