Endocrine Abstracts

Background: The choice of hydrocortisone (HC) formulation for children with adrenal insufficiency necessitates considerations for dose accuracy, palatability, and practicality in everyday life to optimise medicine adherence and health outcomes. Recently, several diverse new formulations have become available in the UK, but no information is available on real-life patient preferences for the different formulations.

Objectives: Explore patient and parent experiences using HC, including assessment of palatability, child independence with using their medicine, barriers to adherence, and additional support required by parents.

Methods: A national web-based survey was offered to children and adolescents (0-18 years) with adrenal insufficiency or their parents, and circulated via patient support groups and locally at our centre. Taste was scored on a 7-point numerical or validated TASTY scale.

Results: There were 111 responses (77 parents; 34 children independently or together with parent). 14% (n=15) of parents prepared doses by dispersing HC 10 mg tablets in water rather than using smaller strength preparations. Palatability: HC tablets were rated lower than Alkindi® and liquid suspension (mean score 3.2 vs 4.1 and 4.9, respectively). For the 6-13 years age group, more responders (parents and children) using Alkindi® ‘strongly agree’ or ‘agree’ that that the doses were easy for the child to prepare independently compared to those using tablets (67% vs 27%), but there was no difference for older children. 20% (n=22) of responders reported missing doses due to the formulation prescribed or obtaining it via their GP or pharmacy in time. 55% (n=61) of responders stated they would find it ‘extremely useful’ to attend a steroid training clinic for a discussion of choice of HC formulations.

Conclusion: Our survey highlights the variability in national practice with use of HC formulations not matched to patient/parent needs. The real-life data show benefits of using Alkindi® for younger children to encourage independence with taking their medicine, while both Alkindi® and liquid suspension may improve adherence owing to better taste. A pharmacist-led clinic may be helpful to identify suitability of HC preparations for families to facilitate individualised choice of formulations and liaison with primary care for continuity of support across care settings.