Title: The COMMEND YOU Study: Promoting COMMunication in ENDocrinology for YOUng people
Funder: Department of Health (England)

Abstract: Background Many young people with endocrine conditions have inadequate follow up because they lose contact with adult care following transfer from paediatrics. Increasing independence involves changes in the dynamics of communication between patients, parents/carers and health professionals. There is evidence that young people experience communication problems in health care1 but a lack of research and no studies have examined the specific needs of young people with endocrine conditions. Communication interventions (CIs) can help adult patients participate in consultations2. There is a need to identify appropriate CIs and adapt them to help young people with endocrine conditions to determine and enact their preferred involvement in dialogue and shared decision-making with health professionals. Aims We hypothesise that improved communication between young people with endocrine conditions and health care providers will promote continuity of service engagement during transition from paediatric to adult health care and so reduce the risks to quality of life, morbidity and mortality associated with inadequate follow up. As there has been no research on communication in this area our aims are to collaborate with young people to: Examine communication between young people, parents and health professionals in endocrine care Select communication interventions (CIs) and adapt them to meet the preferences and needs of young people, their families and health professionals Assess the feasibility and acceptability of CIs and whether they empower young people. Plan of Investigation Stage 1: 40 consultations with young people aged 10-25 with endocrine conditions will be video and audio recorded and analysed both by using tested scales (OPTION & PCAT) and qualitatively. Young people will complete the Medical Interview Satisfaction Scale. Qualitative interviews will be conducted with young people, parents as apt, and clinicians Stage 2: Based on the outcomes of Stage 1, Communication Interventions (CIs) will be selected and adapted in consultation with young people in focus groups. Stage 3: Following implementation of CIs, 40 consultations will be recorded, with questionnaires and interviews as in stage 1. Data will be analysed to assess the extent to which the adapted CIs are feasible, acceptable and considered empowering of young people. Summary chart in annex 4. Potential Impact This will be the first study of communication in young people’s endocrine care. It will result in Communication Interventions (CIs) adapted to address communication problems and priorities identified by young people. CIs could include training for clinicians, advice for parents and coaching/video modelling/written/web based information as preferred by young people. CIs’ feasibility, acceptability and empowerment of young people will have been assessed in practice settings. Improving communication in young people’s endocrine care will help clinicians to meet young people’s needs and preferences and so reduce the likelihood of poor attendance at clinics and adherence with medication. This would reduce risks to health and quality of life arising from inadequate screening and treatment.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: METABOLIC AND ENDOCRINE