Disparities in the quality of care for patients with type 1 diabetes (T1D) undergoing transition from childrens to adult services are well recognised. Poor planning and ill-defined care pathways promote patient disengagement with many becoming lost to specialist follow-up for years. This study sought to obtain the views of young peoples experiences of transition to identify perceived barriers to an effective and rewarding transition experience. A qualitative questionnaire was distributed to all youth with T1D aged 1419 yrs, undergoing transition (June-Sept 2015) within a regional diabetes network in the UK. Areas explored included views on clinic process; information provided and access to structured education. 189 youth participated in the survey. 74% reported discussing transition with their diabetes team prior to the first appointment. 81% had a good understanding of transition and its aims /objectives; yet only 66% had been given written information about this. During clinics, patients received input from either a paediatric (63%) or adult diabetologist (24%). Only 53% felt that teams explained things well to them, and that there was sufficient time to explore (69%) and address (65%) their concerns. 88% reported receiving structured education during the transition process. 94% indicated a preference to see the same team members during visits and preferred clinics to be scheduled mid afternoon (35 pm), on a working day (50%) and at their local hospital (80%). Narrative feedback highlighted recurring themes including communication style; information giving / sharing and constancy of support. Our study provides evidence that youth with T1D deem consistency of care, providing timely and relevant information and being listened to and treated like an adult as indicators of rewarding and engaging transitional diabetes care. The voice and opinions of young people with T1D should be used to develop care pathways that reflect their specific needs and requirements.
23 - 25 Nov 2016
British Society for Paediatric Endocrinology and Diabetes