Abstract
‘The Inbetweeners’, a National Confidential Enquiry into Patient Outcome and Death (NCEPOD) review, concluded that the transition and transfer of care for young people with complex care needs from paediatric to adult health services is unclear and fragmented. Transition is a priority for the endocrine department at GOSH. We initiated a quality improvement project to address young people’s needs with complex endocrine health conditions in healthcare transition.
Our weekly ‘Big Room’ service development time is a forum for team working and to engage stakeholders and collaborators. First, we agreed a shared vision: ‘safe, effective, and coordinated healthcare transition for endocrine patients that is patient-centred and meets young people’s individual needs’. Next, four objectives aligning to our vision and the NCEPOD review recommendations.
One objective, to ‘define and monitor transfer of care pathways’, was our first focus. We assessed (1) current practice – what we do well and the challenges; (2) endocrine patient cohorts requiring pathways; and (3) with which adolescent and adult services we should partner.
Developing each pathway was an iterative process. We collaborated and ‘tested’ the pathway’s feasibility with sub-specialists, clinical nurse specialists, and external adolescent and adult health teams. We created 19 transfer of care pathways for endocrine conditions. These show the recommended referral age; transition multidisciplinary teams (MDT), adolescent service, and adult service; and hospital and named consultant or clinic.
Outcome measures will include monitoring patient numbers above a certain age in our endocrine clinic. We created a report in Epic (our electronic patient record) to extract this data. Other outcome measures will be feedback from partners in adolescent and adult health services and feedback from young people. We are currently surveying young people at GOSH and after their transfer of care, which will also inform our next healthcare transition focus: the creation of endocrine-specific and patient-centred resources.
