Communication with young people in paediatric and adult endocrine consultations: an intervention development and feasibility study

H Gleeson,P.E Clayton,J Wales,J Downing,P Dimitri,J.R.E Davis,B Young,P Callery

doi:10.1186/s12902-017-0182-6

Abstract

BackgroundCommunication is complex in endocrine care, particularly during transition from paediatric to adult services. The aims of this study were to examine the feasibility of interventions to support young people to interact with clinicians.MethodsDevelopment and evaluation of a complex intervention in 2 phases: Pre-intervention observational study; Intervention feasibility study.Purposive sample of recordings of 62 consultations with 58 young people aged 11–25 years with long-term endocrine conditions in two paediatric and two adult endocrine clinics.Proportion of time talked during consultations, number and direction of questions asked; Paediatric Consultation Assessment Tool (PCAT); OPTION shared decision making tool; Medical Information Satisfaction Scale (MISS- 21).Young people were invited to use one or more of: a prompt sheet to help them influence consultation agendas and raise questions; a summary sheet to record key information; and the www.explain.me.uk website.ResultsNearly two thirds of young people (63%) chose to use at least one communication intervention. Higher ratings for two PCAT items (95% CI 0.0 to 1.1 and 0.1 to 1.7) suggest interventions can support consultation skills. A higher proportion of accompanying persons (83%) than young people (64%) directed questions to clinicians. The proportion of young people asking questions was higher (84%) in the intervention phase than in the observation phase (71%).ConclusionsInterventions were acceptable and feasible. The Intervention phase was associated with YP asking more questions, which implies that the availability of interventions could promote interactivity.

Highlights

Communication is complex in endocrine care, during transition from paediatric to adult services
The Intervention phase was associated with Young people (YP) asking more questions, which implies that the availability of interventions could promote interactivity
There were more females, more participants under 16 and fewer with diagnoses other than Congenital adrenal hyperplasia (CAH), HP or Turner syndrome (TS) in the intervention phase compared to the pre-intervention phase (Table 1)

Summary

Introduction

Communication is complex in endocrine care, during transition from paediatric to adult services. Previous studies have focused on preparation of young people for increasing independence in self-management and the organisation of transfer between paediatric and adult services, including independent consulting [4, 5]. Young people experience problems with communication in health care and can be reluctant to raise personal or sensitive issues or to ask questions that reveal poor adherence [13]. Disengagement from health care can result in young people with endocrine conditions not attending consultations following transfer to adult endocrine care [14, 15], with potential for increased morbidity and mortality [16, 17]

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Discussion

Conclusion