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

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.

Adherence to Growth Hormone Treatment Using a Connected Device in Latin America: Real-World Exploratory Descriptive Analysis Study

“…Instead, transmissions and data usage can be used toward identifying patterns of usage of the system and adherence to treatment. Indeed, in this regard, a framework has been proposed to guide future implementation and research on the use of digital health tools to support patients with growth disorders who require GH therapy [ 25 ]. These insights can be further investigated in smaller-scale studies (eg, exploring qualitative issues with interviews).…”

Integrated Digital Health Solutions in the Management of Growth Disorders in Pediatric Patients Receiving Growth Hormone Therapy: A Retrospective Analysis

“…In this respect, GH therapy is approved for a range of specific short stature conditions to increase growth and adult height, and improve metabolic and psychosocial health (9)(10)(11). When short stature is detected specialist evaluation and management is warranted (12,13). Initial evaluation to accurately identify the cause is based on patient history, meticulous recording of height and height velocity (auxology), and endocrine tests (14).…”

“…In 2020, Merck Healthcare KGaA (Darmstadt, Germany) assembled a panel of scientific experts to consult on the future of and emerging opportunities for its digital health tools to support GH patients, their caregivers, and healthcare team. The resulting framework helped define a roadmap for the evolution of the easypod™ connect digital health ecosystem ( 12 ).…”

Adherence to r-hGH Therapy in Pediatric Growth Hormone Deficiency: Current Perspectives on How Patient-Generated Data Will Transform r-hGH Treatment Towards Integrated Care

“…5 Treatment of these disorders until adult height is reached is, by definition, demanding and the issue of good adherence to the prescribed therapy is highly relevant to the final outcome. 6 Thus, begins a multi-year journey involving daily injections and regular consultation visits (typically every 6 months) to assess growth and metabolic parameters. Along this journey and depending on the healthcare setting, the child and his/her parents receive various levels of information, support, and encouragement to comply with the therapy regimen.…”