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. 2021 May 20;23(5):e27446.
doi: 10.2196/27446.

An eHealth Framework for Managing Pediatric Growth Disorders and Growth Hormone Therapy

Affiliations

An eHealth Framework for Managing Pediatric Growth Disorders and Growth Hormone Therapy

Paul Dimitri et al. J Med Internet Res. .

Abstract

Background: The use of technology to support health and health care has grown rapidly in the last decade across all ages and medical specialties. Newly developed eHealth tools are being implemented in long-term management of growth failure in children, a low prevalence pediatric endocrine disorder.

Objective: Our objective was to create a framework that can guide future implementation and research on the use of eHealth tools to support patients with growth disorders who require growth hormone therapy.

Methods: A total of 12 pediatric endocrinologists with experience in eHealth, from a wide geographical distribution, participated in a series of online discussions. We summarized the discussions of 3 workshops, conducted during 2020, on the use of eHealth in the management of growth disorders, which were structured to provide insights on existing challenges, opportunities, and solutions for the implementation of eHealth tools across the patient journey, from referral to the end of pediatric therapy.

Results: A total of 815 responses were collected from 2 questionnaire-based activities covering referral and diagnosis of growth disorders, and subsequent growth hormone therapy stages of the patient pathway, relating to physicians, nurses, and patients, parents, or caregivers. We mapped the feedback from those discussions into a framework that we developed as a guide to integration of eHealth tools across the patient journey. Responses focused on improved clinical management, such as growth monitoring and automation of referral for early detection of growth disorders, which could trigger rapid evaluation and diagnosis. Patient support included the use of eHealth for enhanced patient and caregiver communication, better access to educational opportunities, and enhanced medical and psychological support during growth hormone therapy management. Given the potential availability of patient data from connected devices, artificial intelligence can be used to predict adherence and personalize patient support. Providing evidence to demonstrate the value and utility of eHealth tools will ensure that these tools are widely accepted, trusted, and used in clinical practice, but implementation issues (eg, adaptation to specific clinical settings) must be addressed.

Conclusions: The use of eHealth in growth hormone therapy has major potential to improve the management of growth disorders along the patient journey. Combining objective clinical information and patient adherence data is vital in supporting decision-making and the development of new eHealth tools. Involvement of clinicians and patients in the process of integrating such technologies into clinical practice is essential for implementation and developing evidence that eHealth tools can provide value across the patient pathway.

Keywords: adherence to treatment; eHealth; eHealth tools; growth failure; growth hormone; growth hormone therapy; pediatric growth disorders; pediatrics; referral and diagnosis; workshop discussions.

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Conflict of interest statement

Conflicts of Interest: EK is an employee of Merck KGaA, Darmstadt, Germany. LF-L is chief scientific officer at Adhera Health Inc, Palo Alto, CA, USA. MB is an employee of Tiba Medical Inc, Beaverton, OR, USA. TR provided paid advisory and consultancy services for Merck KGaA Darmstadt. The other authors have no conflicts to declare.

Figures

Figure 1
Figure 1
Patient journey for children with growth failure and those who receive growth hormone therapy. GH: growth hormone; GP: general practitioner; HSDS: height standard deviation score; Ht: height; HV: height velocity; IGF-1: insulin-like growth factor-1; PSP: pediatric specialist physician; SDS: standard deviation score.
Figure 2
Figure 2
Workshop participation methodological steps. Each step was carried out twice, first in relation to referral and diagnosis stages and second in relation to all stages from growth hormone therapy initiation to completion.
Figure 3
Figure 3
Physician viewpoints regarding referral and diagnosis stages of pediatric patients with growth failure. Where no comments box is shown, clinicians did not provide any opinions relating to that category. HCP: health care provider.
Figure 4
Figure 4
Physician viewpoints regarding growth hormone therapy initiation, monitoring, and transition. Where no comments box is shown, clinicians did not provide any opinions relating to that category. GH: growth hormone; IGF-1: insulin-like growth factor-1.
Figure 5
Figure 5
Framework for managing pediatric growth disorders and growth hormone therapy mapped to the patient journey. AR/VR: augmented reality/virtual reality; HCP: healthcare provider.

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