Giving young people with chronic kidney disease a voice in planning healthcare services

Abstract

Aim As part of an NHS Kidney Care commissioned national project to support young people with kidney disease, this study aims to translate the views of those with chronic kidney disease (CKD) into sustainable improvements in transition services for adolescents Method Two anonymous, qualitative questionnaires were designed, to seek information about transition, experiences of adult services preferred method of communication. One for 14-18 year olds and one for 18-25 year olds. These were sent to patients with CKD stages 4 and 5 and post renal transplant from the South West were identified from established databases in each of the renal units across the region Results Response rates were 53% from 14-18 age group and 52% from 18-25 age group. Over 70% of young people wanted to be involved in the project, reviewing the material produced and sharing their opinions Questions around communication showed that 84% of 14-18 year olds and 92% of 18-25 year olds have a mobile phone, 92% of 14-18 year olds and 88% of 18-25 year olds have computer access. The most popular methods of communication about outpatient appointments were via text messaging or email. The preferred way to receive education, rather than traditional methods were via social media and internet sites, with moving away from home, diet and exercise the most popular subjects they wanted information about. Questions regarding the transition process showed that 25% of young people did not want to meet other young people with kidney conditions but wanted peer support via social media. 90% would like to be introduced to the adult service before transfer and 50% would like to be seen in a young adult clinic. Conclusion The results are now influencing service development with heightened awareness amongst staff. New pathways for transition and integration into adult services have been developed and young adult clinics have been established in three centres. There has been a much greater use of social media tools and a range of supportive educational material developed. Lessons learnt from this study would be transferable to other chronic diseases for whom safe and supportive transfer to adult services is essential.