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

Abstract

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.

Motivation for and adherence to growth hormone replacement therapy in adults with hypopituitarism: the patients‘ perspective

“…In this study, we explored motivation for and adherence to rhGH replacement in a large cohort of patients with biochemically proven severe GHD. Approximately three quarters of our 141 patients (75.9%) currently received hrGH replacement while the rest either declined or dropped out of rhGH therapy, which is similar to the distribution of treated versus untreated patients in another recent smaller monocentric study on adherence to rhGH in adults by Amereller et al [14]. Although almost 40% of our patients in our treatment group reported side effects of the injection, the majority had high rhGH specific adherence scores.…”

“…Although almost 40% of our patients in our treatment group reported side effects of the injection, the majority had high rhGH specific adherence scores. Additionally, 67% of the patients reported not to have left out an injection within the last 4 weeks, again paralleling the results of the Amereller study, [14] in which 76% of 46 GHD patients on rhGH reported to never leave out an injection. This study, the present one and a 2016 publication by Auer et al [23] who used prescription data to calculate adherence to rhGH demonstrate a much better degree of adherence in adult than in pediatric patients with severe GHD, in whom adherence is as low as 29% [13].…”

“…In contrast, 78.5% of patients in the treatment group reported here, relied on their physician's advice as a reason for substituting rhGH and 66.4% stated that taking rhGH regularly was very important to them despite a high degree of reporting and feeling burdened by injection side effects. Since injection side effects played no role for adherence in our study and in view of the rather reserved attitude of GH-deficient adults toward switching to long-acting rhGH as reported in another study [14], we conclude that this form of therapy may play a less important role for adults than for children in improving adherence to rhGH replacement.…”

Managing Paediatric Growth Disorders: Integrating Technology Into a Personalised Approach

“…It is important to make sure that they have a clear rationale for the need for treatment and for daily injections. A recent study in adults with GH deficiency showed that non-adherence was related to lack of understanding of the primary disorder, which can be improved through focused education ( 19 ). A practical plan needs to be agreed for how, where and when the GH injections are given to ensure that treatment is administered more regularly.…”

“…Insufficient education of the patient by the HCP can result in the family seeking alternative advice on the internet and thus receiving more confusing, incorrect and worrying messages. More accurate information needs to be available regarding the benefits of GH therapy with advantages outside growth being emphasised, such as improved general health and self-esteem ( 19 ). Accurate information regarding GH injection devices needs to be given with the choice of the most suitable injection device made by the family before the initiation of therapy.…”