ESPE Abstracts

Introduction: CAH is a chronic inherited disease which needs the treatment for the whole life. This situation forms the necessity of a proper patient- doctor relations: not only compliance, but rather informed cooperation. The neonatal screening for CAH allowing the early diagnosis and treatment and availability of internet sources of professional knowledge is the new challenge in the way of education of patients. In Poland there is still observed the dominance of the paternalistic model in physician-patient relationships and a low level of social trust in physicians.

Material and Methods: An interdisciplinary project on CAH, integrating social sciences (anthropology) and medicine (pediatric endocrinology). The data was analyzed basing on (1) in-depth interviews (IDI) with parents of children with CAH, and with (2) endocrinologists who take medical care of CAH patients; and additionally (3) qualitative analysis of the Polish closed Facebook (FB) group dedicated to CAH (currently 792 members, the group has been operating since 2013; anthropologist conducted the observation with the consent of the group members). The collected material was coded. This process employed an inductive approach using thematic analysis.

The Results: Nowadays patients become more and more aware of their rights and possibilities of medical treatments, among others thanks to Internet. We can observe self-education of patients also based on professional materials. We Identified 4 areas of negotiating medical decisions in the case of CAH: 1. Number of hydrocortisone doses: patients increasingly declare the will to give more than 3 doses of hydrocortisone daily; 2. Technological novelty: the readiness to use a cortisol pump. 3. Genital reconstruction surgery: timing and a need of more individual approach; 4. Emergency Hydrocortison Injection Kit availability.

Conclusions: CAH is one of this chronic diseases in which the treatment takes place at home and parents/ patients become a professionals in this particular topic thanks to the continuous observations of potential symptoms and necessity of making decisions concerning the evaluation of patients condition and current treatment. Thus, they are armed with a specific type of knowledge that the doctor cannot ignore. Additionally it is overlapped by FB group activities what gives the tools allowing the generalization of parents experience and knowledge and can influence the approach to the patient by professionals. The FB group becomes the important social actor processing experience of patients and experts knowledge and forms a new patient type, who could became a partner in better therapy and implementation of new solutions.