Introduction: A Patient Held Record (PHR) has been developed for use in adolescent girls with Turner Syndrome (TS) attending a dedicated Turner Transition clinic, RHC Glasgow. The PHR has been devised to encourage knowledge of TS; medcial care and ways to maintain good health and to promote self advocacy.
Aim: To assess patient acceptability and user friendliness of a PHR in adolescent girls with TS.
Method: A PHR and questionnaire were issued to all girls over 12 years attending a Turner Transition Clinic between March and June 2017. The girls were advised to complete and post the questionnaire following the use of the PHR for 1 month. The questionnaire contains five questions (responses on a 4-point likhert scale ranging from not at all, a little, quite a lotto a lot):
Results: 4/15 girls, who received the PHR, median age 13.6 years (range,12.019.0), returned completed questionnaires. 3/4 (75%) found the PHR a little useful; 3/4 (75%) stated that the PHR was easy to use and would be quite likely to use in the future. 2/4 (50%) of girls felt quite a lot better informed about their condition and their medications after using the PHR. 2/4 (50%) of girls commented that they would like to learn more about their transition from paediatric to adult care and their future education and career prospects.
Conclusion: The PHR is easy to use but requires further input from girls with TS to make it more useful and informative. Both feedback from the questionnaire and during a planned focus group will inform changes in design and content to improve this.
22 - 24 Nov 2017
British Society for Paediatric Endocrinology and Diabetes