PP21. Patient attitudes to new national on-line paediatric rheumatology transition documentation

Abstract

Background: It is crucial to ensure a smooth transfer of care from paediatric rheumatology to adult rheumatology services. To assist in planning this transfer and to ensure that adolescents are well equipped to feel in control of this transition, a new national web-based resource for transitional care, Ready, Steady, GO! [1] has been developed. This has now been accepted by NHS England and is available free to UK paediatric rheumatology services. Aims: A pilot evaluation to assess readability and acceptability of the Ready, Steady, GO! documents to adolescents attending a paediatric rheumatology clinic in Stoke-on-Trent, an area with poor literacy rates. Methods: Ten consecutive adolescent patients attending a paediatric rheumatology follow-up clinic were asked their opinions about the new online transition documents and their understanding about questionnaires within the programme. Patients aged 10-13 years assessed the Ready questionnaires, aged 14-15 years assessed the Steady questionnaires and patients aged 16+ assessed the GO! documentation. Patients were asked about how they perceived transition to adult services in the context of the new Ready, Steady, GO! programme. In addition, rather than completing the questionnaires, they were asked to comment on their understanding of the words and phrases within the documentation. Results: Many patients expressed some reservations and apprehension about moving to adult services, with relatively limited current knowledge of transition processes: 'I feel unsure, I don't know what to expect'. When asked about the Ready, Steady, GO! programme 9/10 gave positive responses, the remaining patient exhibited the most problems with understanding and literacy: 'I like the idea of them checking if you're OK to move to adult services'. Most patients felt the content of the questions was appropriate, a minority expressed concerns around comprehension: 'It is long winded and some of the questions are. complex'. In the individuals who felt they understood the questions, on direct questioning, some lack of understanding of the precise meaning of questions became evident. In addition, there were specific recurring words/phrases that caused a number of individuals comprehension problems, including: procedures, shared decision making, fatigue, self-advocacy, eligibility, appropriate eating. Conclusion: There was clear enthusiasm from adolescents for the new national Ready, Steady, GO! web-based programme. Within this small pilot evaluation, there were some issues with the complexity of the vocabulary used within the questionnaires, affecting both readability and understanding. These could easily be addressed as the programme is developed further.