Endocrine Abstracts

Background: In the UK, recombinant human growth hormone(rhGH) is approved for children with growth failure associated with six different conditions. According to NICE guidelines, clinicians should have a comprehensive discussion with patients and/or caregivers about treatment options. Research shows that patients retain only about 20% of the information provided during a consultation. This can be improved to around 50% when written information is also provided. Our study aimed to analyse the readability and quality of patient information on rhGH from major paediatric endocrine society websites.

Methods: We conducted a search on the websites of twelve paediatric endocrine societies to find patient/parent information leaflets on rhGH treatment, including its administration, monitoring, benefits, and side effects. We assessed the quality of the information using two validated patient information tools: the DISCERN instrument(16-items) and the EQIP tool(35-items). Readability was assessed with the Flesch reading ease score.

Results: We identified four patient information leaflets specifically designed for growth hormone treatment or general growth problems from four societies: Australia and New Zealand Society for Paediatric Endocrinology and Diabetes, European Society for Paediatric Endocrinology, Paediatric Endocrine Society and British Society for Paediatric Endocrinology and Diabetes. Median Flesch Reading Ease score was 57.2(range: 54–61.4) which is classified as fairly difficult to read. Median DISCERN score was 40.5 which is classified as fair quality (range: 21-58, maximum score 80), while the median EQIP score was 56 (range: 35-78, maximum score 100). All leaflets provided some description of the treatment purpose. Potential side effects were mentioned, but the benefits of treatment were not always fully described, and there were no quantitative estimates of risks or benefits. There was no indication that patients were involved in the production of any of the leaflets. While all leaflets had a satisfactory design, only one used clear figures or graphs, and only one provided a space for patients to take notes.

Conclusion: This study highlights the limited and suboptimal quality of available information on rhGH treatment through international paediatric endocrine society websites. The existing information may not adequately support patients and/or caregivers in making fully informed decisions.