ESPE Abstracts

Background: Good adherence to recombinant human growth hormone (r-hGH) is crucial to achieve optimal growth outcomes in children with GH deficiency (GHD). Controlling factors that negatively impact adherence is difficult in clinical practice. In order to obtain a better understanding of caregiver behaviour, an Argentinian patient support programme (PSP) implemented TuiTek^®, a personalised programme comprising behavioural change training, call guides and resource packs. It addresses four key dimensions commonly faced by caregivers: 1) disease and treatment coherence, 2) emotional burden, 3) treatment-related anxiety and 4) self-administration, and offers tools and strategies to improve each of these dimensions in cases where scores fall outside of the expected limits.

Aim: To evaluate the impact of the TuiTek^® PSP on caregivers’ perceptions of r-hGH adherence and treatment options in patients with GHD over three months in Argentina.

Methods: Nurses associated with the PSP delivered a personalisation questionnaire based on feedback received from 76 caregivers of patients with GHD who were undergoing r-hGH treatment using the easypod^® auto-injector device in Argentina; risk assessment scores were established using a 5-point rating scale. Caregivers who were classified as ‘high risk’ in at least one of the four dimensions (defined as a score of 1–3 for disease and treatment coherence and self-administration; 3–5 for emotional burden and treatment-related anxiety) at the start of the programme received bi-weekly personalised telephone interventions and follow-up calls from PSP nurses over the course of three months. The caregivers were then reclassified in each of the four dimensions post-intervention. The Wilcoxon-sum rank test was used to analyse questionnaire-based scoring patterns between baseline and follow-up; P<0.05 was considered statistically significant.

Results: Of the 460 caregivers enrolled in the study, 170 (37%) were initially categorised as ‘high risk’ and 290 (63%) as ‘low risk’. Of the caregivers in the ‘high risk’ group, 76 completed the entire three-month programme. Statistically significant differences (P<0.05) in questionnaire scores between baseline and follow-up were observed for ‘disease and treatment coherence’, ‘emotional burden’, ‘self-administration’ and ‘treatment-related anxiety’. Over the three month period, the percentage of caregivers considered to be at ‘high risk’ regarding both ‘disease and treatment coherence’ and ‘self-administration’ decreased by 100%. ‘Treatment-related anxiety’ was reduced by 67,5%.

Conclusion: The TuiTek^® PSP enabled nurses to provide more effective support for caregivers. This intervention could help caregivers to improve and maintain their child’s adherence to r-hGH therapy with the goal of optimising clinical outcomes.