Introduction: Parents of children with complex diseases require easily understandable information about their disease to improve health outcomes. Improved disease understanding will also aid shared decision making between clinicians and families. Congenital hyperinsulinism (CHI) is a rare and complex disease of hypoglycaemia associated with significant neurodevelopmental morbidity for which online video-sharing information resources are available. The utility of such information for parents of CHI patients has not been assessed.
Aims: 1) To assess the effectiveness of three online (www.YouTube.com) videos in delivering CHI health information; 2) to evaluate impact of videos on parent confidence and anticipated future behaviour in caring for their child with CHI and 3)to consider opinions about the quality and format of the videos viewed.
Methods: A total of fifteen parents of CHI patients and fifteen non-clinician control subjects were invited to watch three online videos on genetics, hypoglycaemia and diazoxide treatment of patients with CHI. Prior knowledge about CHI or human biology was not assumed. The knowledge impact was assessed by six multiple choice questions (MCQs) before and after watching the videos. These questions were derived by a team of multidisciplinary professionals managing CHI patients. Feedback about quality and format of video was gathered through a 29 part modified e-health Impact Questionnaire.
Results: Overall, parents ability to answer the MCQs improved after watching the videos in pooled analysis (P<0.001, related samples McNemar test), although no improvement was noted for specific questions on hypoglycaemia, insulin actions and diazoxide side effects. No difference was noted between parents and controls either pre-video or post-video, thereby excluding selection bias. Feedback about quality and format had positive themes (intentional positive views in 57100% for each question) suggesting parental trust and information value, although rapid pace of slide change and quantity of information were criticised. One parent of a child with hypoglycaemia induced brain injury found information about hypoglycaemia upsetting. The CHI videos promoted greater awareness and parental decision assertiveness.
Conclusions: Online accessible video based information is helpful for parents of children with CHI. Such information could improve family engagement to deliver improved care for healthier long-term outcomes for patients with CHI.
23 - 25 Nov 2016
British Society for Paediatric Endocrinology and Diabetes