ESPE Abstracts

Background: Numerous studies have highlighted the importance of measuring and achieving optimal adherence to growth hormone treatment in patients with growth disorders. However, there is still a paucity of research on how treatment adherence can be improved in patients with suboptimal adherence.

Aim: To classify the causes of suboptimal adherence and collaborate with patients and caregivers to improve adherence.

Methods: We operate a patient support programme (PSP) in Argentina that provides follow-up and support to patients receiving recombinant human growth hormone (r-hGH) treatment. Parameters such as different types of diagnosis, sex, age at treatment initiation, treatment duration, and adherence (rates and causes if suboptimal) were evaluated. Adherence data were extracted from the Growzen™ digital health ecosystem. In January 2023, we measured adherence and categorised patients into suboptimal (<85%) and optimal (≥85%) groups. During January–March 2023, we collaborated with caregivers and patients through our PSP to improve adherence by addressing actionable causes.

Results: Of 667 patients, 127 (19%) demonstrated suboptimal adherence, while 540 (81%) showed optimal adherence. In the suboptimal adherence group, 88 (69%) patients had actionable causes, whereas 39 (31%) patients had nonactionable causes. The actionable causes included family relationship issues, high emotional burdens of caregivers or patients, payor issues, device issues, and challenges in teenage patients. The nonactionable causes included medical decisions, changes in application schemes, and adverse effects. The PSP implemented a range of interventions aimed at addressing the underlying causes of suboptimal adherence. PSP nurses proactively addressed family relationship issues and significant emotional burdens by engaging with families and providing tools for stress management. Patients encountering payor issues were referred to the ‘HELP insurance advice program’ for assistance with bureaucratic hurdles. For device malfunctions, PSP nurses promptly adjusted the settings. Furthermore, for teenage patients, PSP nurses collaborated with caregivers to foster an understanding of mood management and confidence-building techniques. In the actionable subtoptimal adherence group (n = 88), baseline median adherence to r-hGH therapy was 70%, which increased to 84% after PSP intervention, indicating a statistically significant median improvement of 14% (P <0.001, Wilcoxon signed-rank test). Moreover, 49% (43/88) of patients showed optimal improvement (P <0.001, Binomial Test) in their adherence to r-hGH therapy. Both changes were clinically relevant.

Conclusion: Improving patient adherence is crucial for achieving the patient’s genetic height potential. Our findings suggest that by identifying and addressing the actionable causes of suboptimal adherence through our PSP, we can significantly enhance adherence.