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

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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.

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Most cited references 57

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eHEALS: The eHealth Literacy Scale

Cameron Norman, Harvey A Skinner (2006)

Background Electronic health resources are helpful only when people are able to use them, yet there remain few tools available to assess consumers’ capacity for engaging in eHealth. Over 40% of US and Canadian adults have low basic literacy levels, suggesting that eHealth resources are likely to be inaccessible to large segments of the population. Using information technology for health requires eHealth literacy—the ability to read, use computers, search for information, understand health information, and put it into context. The eHealth Literacy Scale (eHEALS) was designed (1) to assess consumers’ perceived skills at using information technology for health and (2) to aid in determining the fit between eHealth programs and consumers. Objectives The eHEALS is an 8-item measure of eHealth literacy developed to measure consumers’ combined knowledge, comfort, and perceived skills at finding, evaluating, and applying electronic health information to health problems. The objective of the study was to psychometrically evaluate the properties of the eHEALS within a population context. A youth population was chosen as the focus for the initial development primarily because they have high levels of eHealth use and familiarity with information technology tools. Methods Data were collected at baseline, post-intervention, and 3- and 6-month follow-up using control group data as part of a single session, randomized intervention trial evaluating Web-based eHealth programs. Scale reliability was tested using item analysis for internal consistency (coefficient alpha) and test-retest reliability estimates. Principal components factor analysis was used to determine the theoretical fit of the measures with the data. Results A total of 664 participants (370 boys; 294 girls) aged 13 to 21 (mean = 14.95; SD = 1.24) completed the eHEALS at four time points over 6 months. Item analysis was performed on the 8-item scale at baseline, producing a tight fitting scale with α = .88. Item-scale correlations ranged from r = .51 to .76. Test-retest reliability showed modest stability over time from baseline to 6-month follow-up (r = .68 to .40). Principal components analysis produced a single factor solution (56% of variance). Factor loadings ranged from .60 to .84 among the 8 items. Conclusions The eHEALS reliably and consistently captures the eHealth literacy concept in repeated administrations, showing promise as tool for assessing consumer comfort and skill in using information technology for health. Within a clinical environment, the eHEALS has the potential to serve as a means of identifying those who may or may not benefit from referrals to an eHealth intervention or resource. Further research needs to examine the applicability of the eHEALS to other populations and settings while exploring the relationship between eHealth literacy and health care outcomes.

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Guidelines for Growth Hormone and Insulin-Like Growth Factor-I Treatment in Children and Adolescents: Growth Hormone Deficiency, Idiopathic Short Stature, and Primary Insulin-Like Growth Factor-I Deficiency

Adda Grimberg, Sara A. DiVall, Constantin Polychronakos … (2017)

Background/Aims: On behalf of the Drug and Therapeutics, and Ethics Committees of the Pediatric Endocrine Society, we sought to update the guidelines published in 2003 on the use of growth hormone (GH). Because idiopathic short stature (ISS) remains a controversial indication, and diagnostic challenges often blur the distinction between ISS, GH deficiency (GHD), and primary IGF-I deficiency (PIGFD), we focused on these three diagnoses, thereby adding recombinant IGF-I therapy to the GH guidelines for the first time. Methods: This guideline was developed following the GRADE approach (Grading of Recommendations, Assessment, Development, and Evaluation). Results: This guideline provides recommendations for the clinical management of children and adolescents with growth failure from GHD, ISS, or PIGFD using the best available evidence. Conclusion: The taskforce suggests that the recommendations be applied in clinical practice with consideration of the evolving literature and the risks and benefits to each individual patient. In many instances, careful review highlights areas that need further research.

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The Current State Of Telehealth Evidence: A Rapid Review

Erin Shigekawa, Margaret Fix, Garen Corbett … (2018)

Policy makers and practitioners show a continued interest in telehealth's potential to increase efficiency and reach patients facing access barriers. However, telehealth encompasses many applications for varied conditions and populations. It is therefore difficult to draw broad conclusions about telehealth's efficacy. This rapid review examines recent evidence both about telehealth's efficacy by clinical area and about telehealth's impact on utilization. We searched for systematic reviews and meta-analyses of the use of telehealth services by patients of any age for any condition published in English in the period January 2004-May 2018. Twenty systematic reviews and associated meta-analyses are included in this review, covering clinical areas such as mental health and rehabilitation. Broadly, telehealth interventions appear generally equivalent to in-person care. However, telehealth's impact on the use of other services is unclear. Many factors should be carefully considered when weighing the evidence of telehealth's efficacy, including modality, evidence quality, population demographics, and point-in-time measurement of outcomes.

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Author and article information

Contributors

Paul Dimitri:

ORCID: https://orcid.org/0000-0001-7625-6713

The Academic Unit of Child HealthSheffield Children's NHS Foundation TrustDamer St BuildingWestern BankSheffield, S10 2THUnited Kingdom44 114 271 7118paul.dimitri@nhs.net

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J Med Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: May 2021

Publication date (Electronic): 20 May 2021

Volume: 23

Issue: 5

Electronic Location Identifier: e27446

Affiliations

[1 ] The Academic Unit of Child Health Sheffield Children's NHS Foundation Trust Sheffield United Kingdom

[2 ] Adhera Health Inc Palo Alto, CA United States

[3 ] Royal Manchester Children’s Hospital Manchester University Hospitals Foundation Trust Manchester United Kingdom

[4 ] Centro de Investigaciones Endocrinológicas “Dr. César Bergadá” (CEDIE) Hospital de Niños Ricardo Gutiérrez Buenos Aires Argentina

[5 ] Department of Paediatrics Santa Casa de São Paulo School of Medical Sciences São Paulo Brazil

[6 ] Department of Pediatrics Region Västra Götaland Sahlgrenska University Hospital Gothenburg Sweden

[7 ] Department of Pediatrics Institute of Clinical Sciences University of Gothenburg Gothenburg Sweden

[8 ] Paediatric Endocrinology Hospital Universitario Miguel Servet Zaragoza Spain

[9 ] New Children’s Hospital University of Helsinki and Helsinki University Hospital Helsinki Finland

[10 ] Vestische Hospital for Children and Adolescents University of Witten/Herdecke Datteln Germany

[11 ] Department of Paediatric Endocrinology Alder Hey Children's Hospital Liverpool United Kingdom

[12 ] Department of Pediatric Endocrinology Assistance Publique – Hôpitaux de Paris, Université Paris Saclay Hôpital Bicetre Le Kremlin Bicêtre France

[13 ] Department of Pediatrics National Cheng Kung University Tainan Taiwan

[14 ] Department of Pediatrics University Malaya Medical Centre Kuala Lumpur Malaysia

[15 ] Tiba Medical Inc Beaverton, OR United States

[16 ] Global Medical Affairs, Cardiometabolic and Endocrinology Merck KGaA Darmstadt Germany

Author notes

Corresponding Author: Paul Dimitri paul.dimitri@ 123456nhs.net

Author information

Paul Dimitri https://orcid.org/0000-0001-7625-6713

Luis Fernandez-Luque https://orcid.org/0000-0001-8165-9904

Indraneel Banerjee https://orcid.org/0000-0003-4280-7470

Ignacio Bergadá https://orcid.org/0000-0001-6546-1949

Luis Eduardo Calliari https://orcid.org/0000-0003-2085-5316

Jovanna Dahlgren https://orcid.org/0000-0002-9637-3439

Antonio de Arriba https://orcid.org/0000-0002-2865-5813

Risto Lapatto https://orcid.org/0000-0002-8030-2505

Thomas Reinehr https://orcid.org/0000-0002-4351-1834

Senthil Senniappan https://orcid.org/0000-0002-8001-0342

Cécile Thomas-Teinturier https://orcid.org/0000-0003-4821-967X

Meng-Che Tsai https://orcid.org/0000-0003-1057-3315

Azriyanti Anuar Zaini https://orcid.org/0000-0001-5659-765X

Merat Bagha https://orcid.org/0000-0002-5870-1358

Ekaterina Koledova https://orcid.org/0000-0003-2572-9052

Article

Publisher ID: v23i5e27446

DOI: 10.2196/27446

PMC ID: 8176345

PubMed ID: 34014174

SO-VID: e408a192-48ea-4794-ad8d-0e4f3ee9a9b0

Copyright © ©Paul Dimitri, Luis Fernandez-Luque, Indraneel Banerjee, Ignacio Bergadá, Luis Eduardo Calliari, Jovanna Dahlgren, Antonio de Arriba, Risto Lapatto, Thomas Reinehr, Senthil Senniappan, Cécile Thomas-Teinturier, Meng-Che Tsai, Azriyanti Anuar Zaini, Merat Bagha, Ekaterina Koledova. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 20.05.2021.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 26 January 2021

Date revision requested : 18 February 2021

Date revision received : 22 March 2021

Date accepted : 11 April 2021

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