Determinants of quality of life in children with chronic somatic disease: pilot data from the GapS Questionnaire.

PURPOSE: Quality of life (QoL) is a ubiquitous yet poorly defined concept; the precise determinants of QoL are rarely identified. We used pilot data from the GapS Questionnaire to investigate the most important determinants of QoL in children with chronic somatic illness. METHODS: We enrolled 92 participants including 60 parents and 32 of their children. The sample comprised rheumatology, diabetes, epilepsy, gastroenterology, cystic fibrosis, and day unit patients. Trained interviewers administered the GapS Questionnaire to parents, and to children if ≥ 10 years. We determined the relative importance of different items for QoL. RESULTS: Child participants had a mean age of 14.7 years. Children identified "having good friendships", "being happy most days", and "getting along with parents" as most important. Parents ranked most highly "being allowed to do all the things you like doing", "getting told you have done a good job at something", and "being physically able to do everything you enjoy doing". CONCLUSIONS: Physical health items were not as important as social and psychological determinants of QoL in our pilot sample.

The Quality of My Life questionnaire: the minimal clinically important difference for pediatric rheumatology patients.

OBJECTIVE: To determine parent-child agreement for the Quality of My Life (QoML) questionnaire. To establish construct validity of the QoML questionnaire. To determine the minimal clinically important difference (MCID) for the Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) scales. METHODS: A total of 136 families of children with inflammatory arthritis were interviewed. The QoML questionnaire was completed for the child's current state of health, and under 2 hypothetical scenarios, where (1) there is a hypothetical small improvement, and (2) there is a hypothetical small deterioration in health. The differences between the original QOL and HRQOL scores and hypothetical improvement and deterioration scores, respectively, were calculated to give MCID scores. RESULTS: In total, 131 families completed the questionnaires. Intraclass correlation coefficients for parent proxy report and patient self-report of the QOL and HRQOL were 0.63 and 0.40, respectively. Correlations of QOL with pain and disease severity were moderately negative (r = -0.55 and -0.56, respectively, p < 0.0001). Correlations of HRQOL with pain and disease severity were strongly negative (r = -0.66 and r = -0.68, respectively, p < 0.0001). The MCID for improvement on the QOL was 7 mm, and for the HRQOL 11 mm. The MCID for deterioration in QOL was -33 mm, and for HRQOL -38 mm. CONCLUSION: The QoML questionnaire demonstrated fair parent-child agreement and good convergent construct validity. MCID scores will enable clinicians to interpret QoML questionnaire results in a clinically meaningful way.

Arthritis presenting during the acute phase of Kawasaki disease.

OBJECTIVE: To define the prevalence, pattern, and clinical course of arthritis presenting at the time of diagnosis of Kawasaki disease. STUDY DESIGN: A single-center, retrospective study of 414 consecutive patients diagnosed with Kawasaki disease between January 1997 and December 2002 was performed. Standardized clinical assessments, laboratory and imaging test results, and treatment regimens were reviewed. The clinical, laboratory, treatment response, and coronary outcome data were analyzed for children with and without arthritis. RESULTS: The prevalence of arthritis was 7.5% (31/414). In the 31 children with arthritis, 55% had oligoarticular involvement and 45% had polyarticular involvement. In both of these groups, the large joints were predominantly involved. Some 88% of the children with arthritis responded to standard intravenous immunoglobulin therapy for acute Kawasaki disease and did not require additional medications. The children with arthritis had significantly increased levels of inflammatory markers, but their demographical and clinical features were otherwise similar to those of the children without arthritis, including coronary outcome, with the same proportion (13%) of children from each group having coronary artery lesions (z-score > or = 2.5). CONCLUSIONS: Arthritis is a short-lived phenomenon included in the clinical spectrum of acute Kawasaki disease. Children with arthritis have evidence of increased systemic inflammation but otherwise share the same clinical features, response to treatment, and coronary outcomes as patients without arthritis. Most cases of arthritis resolve without additional therapeutic intervention.