Searchable abstracts of presentations at key conferences in endocrinology
Endocrine Abstracts (2017) 51 P028 | DOI: 10.1530/endoabs.51.P028

BSPED2017 Poster Presentations Miscellaneous/other (16 abstracts)

Introducing a patient held record in a turner transition clinic, RHC Glasgow

Teresa McBride 1 & Avril Mason 2

1Department of Paediatric Endocrinology, RHC Glasgoe, Glasgow, UK; 2Department of Paediatric Endocrinology, RHC Glasgow, Glasgow, UK.

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 lot’to ‘a lot’):

  1. I found the PHR useful
  2. I found the PHR easy to use
  3. I would continue to use a PHR in the future
  4. I feel better informed about my health
  5. I feel better informed about my medicines

Results: 4/15 girls, who received the PHR, median age 13.6 years (range,12.0–19.0), 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.

Volume 51

45th Meeting of the British Society for Paediatric Endocrinology and Diabetes

British Society for Paediatric Endocrinology and Diabetes 

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