The Pediatric Growth Hormone Deficiency Patient Journey: Identifying Opportunities for Digital Health Interventions
Giunti, Guido; Michelis, Fulvio; Halabi, Ammar; Koledova, Ekaterina; Harvey, Jamie; Dimitri, Paul
IOS Press
Giunti, G., Michelis, F., Halabi, A., Koledova, E., Harvey, J., & Dimitri, P. (2024). The pediatric growth hormone deficiency patient journey: Identifying opportunities for digital health interventions. In L. Stoicu-Tivadar, A. Benis, T. M. Deserno, S. D. Bolboacă, K. Saranto, M. Crişan-Vida, P. Gallos, O. S. Chirila, P. Weber, G. Mihalaş, & O. Tamburis (Eds.), Studies in Health Technology and Informatics. IOS Press. https://doi.org/10.3233/SHTI241066
https://creativecommons.org/licenses/by-nc/4.0/
© 2024 The Authors. This article is published online with Open Access by IOS Press and distributed under the terms of the Creative Commons Attribution Non-Commercial License 4.0 (CC BY-NC 4.0).
https://creativecommons.org/licenses/by-nc/4.0/
© 2024 The Authors. This article is published online with Open Access by IOS Press and distributed under the terms of the Creative Commons Attribution Non-Commercial License 4.0 (CC BY-NC 4.0).
https://creativecommons.org/licenses/by-nc/4.0/
Julkaisun pysyvä osoite on
https://urn.fi/URN:NBN:fi:oulu-202411256896
https://urn.fi/URN:NBN:fi:oulu-202411256896
Tiivistelmä
Abstract
Pediatric growth hormone deficiency (PGHD) is a chronic condition where the pituitary gland fails to produce sufficient growth hormone, leading to delayed growth and developmental challenges. Patient journey maps can provide insight into pain points and potential opportunities for new or improved interventions to enhance care. However, a patient journey map does not yet exist for PGHD. Secondary data analysis was performed on interviews and focus groups from five cohorts in Sweden, the United Kingdom, Luxembourg, France, and The Netherlands. Participants included 62 patients and caregivers who used a prototype digital health solution, which was used to guide discussions. Grounded theory was used to analyze the data, resulting in a patient journey map comprising six stages: awareness, diagnosis, treatment planning, treatment initiation, treatment maintenance and transition. This provides the first detailed PGHD patient journey map, revealing emotional sensitivities and challenges at each stage, and suggesting areas for targeted interventions to improve adherence and long-term outcomes.
Pediatric growth hormone deficiency (PGHD) is a chronic condition where the pituitary gland fails to produce sufficient growth hormone, leading to delayed growth and developmental challenges. Patient journey maps can provide insight into pain points and potential opportunities for new or improved interventions to enhance care. However, a patient journey map does not yet exist for PGHD. Secondary data analysis was performed on interviews and focus groups from five cohorts in Sweden, the United Kingdom, Luxembourg, France, and The Netherlands. Participants included 62 patients and caregivers who used a prototype digital health solution, which was used to guide discussions. Grounded theory was used to analyze the data, resulting in a patient journey map comprising six stages: awareness, diagnosis, treatment planning, treatment initiation, treatment maintenance and transition. This provides the first detailed PGHD patient journey map, revealing emotional sensitivities and challenges at each stage, and suggesting areas for targeted interventions to improve adherence and long-term outcomes.
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