Evaluating the TUITEK? patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina

Frontiers in endocrinology(2023)

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摘要
Introduction: The appropriate use of recombinant human growth hormone (rhGH) treatment provides an opportunity to improve growth outcomes among pediatric patients with growth hormone deficiency (GHD). However, a major challenge in clinical practice is to adequately recognize and address factors that negatively affect treatment adherence. TUITEK (R) patient support program (PSP) was designed to help caregivers of children diagnosed with GHD to personalize the care pathway, improve adherence, and achieve better outcomes. Effectiveness of TUITEK (R) PSP has been demonstrated previously in a smaller sample (n = 31) in Taiwanese population. Here, we present the results from Argentina. Methods: TUITEK (R) PSP was piloted among 76 caregivers of children with GHD administering r-hGH using easypodT (Merck KGaA, Darmstadt, Germany) autoinjector device in Argentina. Based on TUITEK (R) personalization questionnaire, caregivers were assigned to high- and low-risk groups across four categories that may influence adherence, including disease and treatment coherence (DTC), self-administration (SA), treatment-related anxiety (TRA), and emotional burden (EB). The caregivers who were included in atleast one high-risk group had the provision of telephone calls with a nurse practitioner every 2 weeks for 3 months. The Wilcoxon signed-rank test was employed to assess changes in questionnaire-based scoring patterns between baseline and follow- up evaluations. Results: Statistically significant changes (p < 0.05) in questionnaire scores between baseline and follow-up evaluations were observed across the four categories. The mean/median DTC (n = 11) and SA (n = 23) scores changed from 2.45/3 and 2.17/2, respectively, to 4/4, with all the caregivers moving to low-risk group following program completion (100%) for both categories. The mean/ median TRA score (n = 40) changed from 3.58/3 to 2.5/2 and 67.5% of patients (27/40) moved to low-risk group. The mean/median EB score (n = 32) changed from 3.69/3 to 3.13/3 however, none of the caregivers moved to low-risk group (0%). Conclusion: TUITEK (R) PSP is a simple, practical, and time-efficient interventional tool that can be used to address key adherence-related issues among caregivers of children with GHD and provide personalized adherence support. Our findings demonstrate that TUITEK (R) PSP has the potential to improve treatment adherence and self- management, thereby improving growth outcomes in Argentina.
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关键词
adherence,caregiver,electronic injection device,growth disorders,patient support program,pediatric,recombinant human growth hormone treatment,short stature
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