Adherence, Attitudes and Beliefs of Growth Hormone Deficient Patients - A Questionnaire-based Cohort Study

Introduction GHD is a chronic and systemic disease requiring daily replacement of growth hormone (GHRT). Adherence and attitudes of adult GHD patients are not well known. We sought to assess patients' knowledge of growth hormone deficiency (GHD) in association with treatment adherence and attitudes regarding available and upcoming treatment options. Methods We performed a cross-sectional survey with a custom-made questionnaire at a single centre assessing data on demographics, knowledge of GHD, adherence and attitudes towards GHRT. Results Of 106 eligible patients actively followed for GHD 70 returned the completed survey (return-rate 66 %, 34 m/36 f; age 56 +/- 14 years). 46 patients were actively treated, but almost one third (n = 24) refused GHRT. 12 patients had participated in clinical trials with LAGH (long-acting growth hormone). Overall, patients with GHRT showed good adherence. Patients refusing GHRT mostly feared side effects and/or had a lack of information/perceived effect. Disease knowledge and level of education were higher in treated than untreated patients (p = 0.023/0.017). Only 36 % of respondents would initiate treatment with LAGH. Patients with prior LAGH experience and patients with childhood-onset GHD were more likely to adopt LAGH (p = 0.048/0.031). Discussion Most often, misinformation causes patients to refuse GHRT. Possibly the understanding of their condition and consequences of non-treatment is limited. To improve adherence more focused educational and behavioural strategies may be needed. Willingness to begin a therapy with LAGH was lower than expected (36 %). The reasons for reluctance against LAGH need to be elucidated.

Automated summary

Patient adherence and attitudes towards growth hormone deficiency treatment are influenced by their knowledge level and education. Patients who refuse treatment often cite fears of side effects or a lack of information. Education and behavioral strategies may be needed to improve adherence, and reasons for reluctance towards specific treatments should be further investigated.