Clinical case coordinator: Improving health care service for rare disease pediatric patients

Abstract

Introduction. Rare diseases are frequently chronic affecting multiple organ systems. Those patients require periodic and continuous medical evaluation. Due to the high workload of the health care system, accessibility is difficult following negative consequences for health outcomes related to delayed investigation or treatment. Thus, our University Hospital began implementation of clinical case coordinator (CC) for the patients with rare diseases. Methods CC service was implemented in December 2021 with main function of patient referral to certain rare disease expert. Quality questionnaire was created and provided for patients to evaluate previous experience and current situation of referral. Data were analyzed December 2021-March 2022. We collected: total number of consultations needed (different medical experts), registration method, region of origin, waiting duration in days until consultation, and between consultation of different experts. We evaluated patients' service satisfaction level. Statistics were calculated with SPSS 27.0; p3–10% of patients. Consultations of more than 1 specialist were fulfilled within 1-2d. Customers' satisfaction of CC service was evaluated as excellent–85% (of all respondents), very good–10%, good–5%. Conclusions Our data show the important role of CC which led to a significant decrease in waiting duration until referral to a specialist. Most of the patients did find the CC role excellent.