PATIENT AND PARENT EXPERIENCES WITH HEALTH-CARE SERVICES IN PEDIATRICRHEUMATOLOGY

The health care received from first admission to a pediatric rheumatol ogy clinic to 9-year follow-up was assessed in 109 patients with chron ic inflammatory rheumatic diseases or chronic idiopathic musculoskelet al pain. Ninety-five of the patients had received hospital care after the first admission, of whom 53 patients greater than or equal to 18 y ears, 21 patients < 18 years, and 33 parents of patients < 18 years ra ted their degree of satisfaction with the health care from 0 to 10. Me an scores of satisfaction with different aspects of care ranged from 6 .0 to 9.6. Among patients greater than or equal to 18 years, those wit h idiopathic pain were less satisfied than those with inflammatory rhe umatic diseases on the availability of care (mean 6.4 vs. 8.5, p < 0.0 01), continuity of care (mean 6.5 vs. 8.4, p < 0.001), and empathy of the health care providers (mean 6.7 vs. 7.9, p < 0.05). The diagnostic group and the occurrence of remission predicted the level of global s atisfaction in patients greater than or equal to 18 years. In patients < 18 years, chronic family difficulties predicted patient satisfactio n and physical disability and chronic family difficulties predicted pa rent satisfaction. In conclusion, most parents and patients with infla mmatory rheumatic diseases were satisfied with the health care. Howeve r, some patients with idiopathic pain had unmet needs for care.