Patient and parent experiences with health care services in pediatric rheumatology

The health care received from first admission to a pediatric rheumatology clinic to 9-year follow-up was assessed in 109 patients with chronic inflammatory rheumatic diseases or chronic idiopathic musculoskeletal pain. Ninety-five of the patients had received hospital care after the first admission, of whom 53 patients > or = 18 years, 21 patients < 18 years, and 33 parents of patients < 18 years rated their degree of satisfaction with the health care from 0 to 10. Mean scores of satisfaction with different aspects of care ranged from 6.0 to 9.6. Among patients > or = 18 years, those with idiopathic pain were less satisfied than those with inflammatory rheumatic diseases on the availability of care (mean 6.4 vs. 8.5, p < 0.001), 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 satisfaction in patients > or = 18 years. In patients < 18 years, chronic family difficulties predicted patient satisfaction and physical disability and chronic family difficulties predicted parent satisfaction. In conclusion, most parents and patients with inflammatory rheumatic diseases were satisfied with the health care. However, some patients with idiopathic pain had unmet needs for care.