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

INTRODUCTION: The appropriate use of recombinant human growth hormone (r-hGH) 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 tha...

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Autores principales: Assefi, Aria Reza, Graham, Selina, Crespo, María Lourdes, Debicki, Matías, Reston, Jonathan, Gonzalez, Judit, Jheeta, Amrit, Koledova, Ekaterina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117813/
https://www.ncbi.nlm.nih.gov/pubmed/37091843
http://dx.doi.org/10.3389/fendo.2023.1129385
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author Assefi, Aria Reza
Graham, Selina
Crespo, María Lourdes
Debicki, Matías
Reston, Jonathan
Gonzalez, Judit
Jheeta, Amrit
Koledova, Ekaterina
author_facet Assefi, Aria Reza
Graham, Selina
Crespo, María Lourdes
Debicki, Matías
Reston, Jonathan
Gonzalez, Judit
Jheeta, Amrit
Koledova, Ekaterina
author_sort Assefi, Aria Reza
collection PubMed
description INTRODUCTION: The appropriate use of recombinant human growth hormone (r-hGH) 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(®) 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(®) PSP has been demonstrated previously in a smaller sample (n = 31) in Taiwanese population. Here, we present the results from Argentina. METHODS: TUITEK(®) PSP was piloted among 76 caregivers of children with GHD administering r-hGH using easypod™ (Merck KGaA, Darmstadt, Germany) auto-injector device in Argentina. Based on TUITEK(®) 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(®) 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(®) PSP has the potential to improve treatment adherence and self-management, thereby improving growth outcomes in Argentina.
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spelling pubmed-101178132023-04-21 Evaluating the TUITEK(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina Assefi, Aria Reza Graham, Selina Crespo, María Lourdes Debicki, Matías Reston, Jonathan Gonzalez, Judit Jheeta, Amrit Koledova, Ekaterina Front Endocrinol (Lausanne) Endocrinology INTRODUCTION: The appropriate use of recombinant human growth hormone (r-hGH) 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(®) 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(®) PSP has been demonstrated previously in a smaller sample (n = 31) in Taiwanese population. Here, we present the results from Argentina. METHODS: TUITEK(®) PSP was piloted among 76 caregivers of children with GHD administering r-hGH using easypod™ (Merck KGaA, Darmstadt, Germany) auto-injector device in Argentina. Based on TUITEK(®) 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(®) 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(®) PSP has the potential to improve treatment adherence and self-management, thereby improving growth outcomes in Argentina. Frontiers Media S.A. 2023-04-06 /pmc/articles/PMC10117813/ /pubmed/37091843 http://dx.doi.org/10.3389/fendo.2023.1129385 Text en Copyright © 2023 Assefi, Graham, Crespo, Debicki, Reston, Gonzalez, Jheeta and Koledova https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Endocrinology
Assefi, Aria Reza
Graham, Selina
Crespo, María Lourdes
Debicki, Matías
Reston, Jonathan
Gonzalez, Judit
Jheeta, Amrit
Koledova, Ekaterina
Evaluating the TUITEK(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina
title Evaluating the TUITEK(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina
title_full Evaluating the TUITEK(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina
title_fullStr Evaluating the TUITEK(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina
title_full_unstemmed Evaluating the TUITEK(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina
title_short Evaluating the TUITEK(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in Argentina
title_sort evaluating the tuitek(®) patient support program in supporting caregivers of children diagnosed with growth hormone deficiency in argentina
topic Endocrinology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117813/
https://www.ncbi.nlm.nih.gov/pubmed/37091843
http://dx.doi.org/10.3389/fendo.2023.1129385
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