Special health care needs among school-age children with rare diseases

Background: A rare disease is generally considered to have a prevalence of less than one affected individual per 10,000 populations as well as identified in the rare disease list or announced by the Department of Health. Relatively few studies have been conducted concerning rare disease in Taiwan.

Objective: To identify the special health care needs of elementary school children with rare disease from the caregivers' perspectives.

Methods: According to the national surveillance system of rare diseases in Taiwan, there were 2,443 survived cases in August, 2008, and 33.9% of them were 7-15 years old. Data were collected through a mailed questionnaire survey for 695 parent members of the Taiwan Foundation for Rare Disorders who have a child with a rare disease, aged 7-15, using a self-administered anonymous questionnaire.

Results: A total of 344 subjects were recruited in the survey and the response rate was 49.5%. Roughly 51.7% of the children were diagnosed as having a rare disease before two years of age. Over half of the children were matriculated in the general classes as the results of the implementation of the inclusive education. Among the children, 201 (58.4%) required assistance in their daily school life, 74 (21.5%) required special diets, 82 (23.8%) ever injured or got sick, and 91 (26.5%) need special health care at the school. Based on multiple responses, these needs included fall prevention (48.4%), spiritual and emotional support (30.8%), assistance in emergency care delivery (29.7%), and epilepsy management (20.9%).

Conclusions: This study is the first large scale investigation to explore the caregiver's burden for rare disease children. School children with rare diseases required special health care in school. It is suggested to develop the guideline for regular teachers regarding educational and special health care needs in school for children with rare diseases in general classes.