Health care use and patients' perceptions on quality of care in systemic sclerosis

Objectives. To assess health care utilisation in Dutch patients with systemic sclerosis (SSc) and its associated factors. To evaluate patients' perspectives on quality of care and its association with health care use. Methods. In a cross-sectional design, 198 Dutch patients with SSc completed an anonymous survey concerning health care utilisation, quality of care (CQ Index), and quality of life (SF-36). Results. In the last 12 months, 95% of the patients had contact with at least one medical specialist and two-thirds contacted at least one health professional (HP). The median numbers of visits to medical specialists and HPs were 7 and 7.5, respectively. Having a partner and reduced physical health status (SF-36 role-physical) were significantly associated with more visits to medical specialists and HPs. The median numbers of disciplines contacted since the onset of SSc and in the last 12 months were 8 and 4, respectively. Patients with less fatigue (SF-36 vitality) and more pain (SF-36 bodily pain) contacted more disciplines. A higher number of disciplines involved in the care was significantly associated with less satisfaction with the coordination of care (r = -0.14, p=0.03). Conclusion. Health care utilisation in Dutch patients with SSc is substantial, as is reflected in the high number of visits and the number of disciplines. Patients' rating of care coordination was lower if more disciplines were involved in their care.