Endocrine Abstracts

Introduction: Transition readiness is important for adolescents with chronic diseases. Health deterioration in this age may have long-lasting negative effects. Concerning rare endocrine disease, proper knowledge of the condition and treatment is required for optimal disease management.

Aim: The aim of the current study was to develop transition readiness assessment questionnaire suitable for use in pediatric patients and young adults with chronic endocrine diseases.

Methods: A 16 item long questionnaire was developed with similar questions in two variants – one for self-assessment and the other for health care professional (HCP) assessment. In the self-assessment scale, the options were no/I don’t know/yes respectively valued as 0/1/2 points. Depending on the level of knowledge each item in the HCP variant was marked with 0 to 2 points. In total, 32 points yielded a 100% score.

Results: The pediatric patients scored on average 54% in the HCP assessment scale compared to 65% for the adults. In 2/10 adult patients’ the self-assessment and HCP assessment matched. In the rest (8/10) there was a large discrepancy between self and HCP assessment, with higher result in the latter. The two patients with matching results scored 100% indicating that well educated patients are also more self-responsible In all cases the transition readiness questionaries led to discussion with the patient and/or the parent. A second simplified version of the questionaries was developed that reflects the recommendations given by patients and HCPs. After applying corrections to the initial variant, the second version was evaluated as appropriate by the HCPs.

Conclusion: In the majority of patients HCP assessment scored superior compared to self-assessment tool. A second version of the questionnaire was developed for further testing and validation. Transition readiness assessment with tailored tools is useful in initiating discussions with the adult HCP. This facilitates further preparation for the transfer to adult-centered health care.