| Title |
A preliminary study of telemedicine for patients with hepatic glycogen storage disease and their healthcare providers: from bedside to home site monitoring
|
|---|---|
| Published in |
Journal of Inherited Metabolic Disease, March 2018
|
| DOI | 10.1007/s10545-018-0167-2 |
| Pubmed ID | |
| Authors |
Irene J. Hoogeveen, Fabian Peeks, Foekje de Boer, Charlotte M. A. Lubout, Tom J. de Koning, Sebastiaan te Boekhorst, Robert‐Jan Zandvoort, Rob Burghard, Francjan J. van Spronsen, Terry G. J. Derks |
| Abstract |
The purpose of this project was to develop a telemedicine platform that supports home site monitoring and integrates biochemical, physiological, and dietary parameters for individual patients with hepatic glycogen storage disease (GSD). The GSD communication platform (GCP) was designed with input from software developers, GSD patients, researchers, and healthcare providers. In phase 1, prototyping and software design of the GCP has occurred. The GCP was composed of a GSD App for patients and a GSD clinical dashboard for healthcare providers. In phase 2, the GCP was tested by retrospective patient data entry. The following software functionalities were included (a) dietary registration and prescription module, (b) emergency protocol module, and (c) data import functions for continuous glucose monitor devices and activity wearables. In phase 3, the GSD App was implemented in a pilot study of eight patients with GSD Ia (n = 3), GSD IIIa (n = 1), and GSD IX (n = 4). Usability was measured by the system usability scale (SUS). The mean SUS score was 64/100 [range: 38-93]. This report describes the design, development, and validation process of a telemedicine platform for patients with hepatic GSD. The GCP can facilitate home site monitoring and data exchange between patients with hepatic GSD and healthcare providers under varying circumstances. In the future, the GCP may support cross-border healthcare, second opinion processes and clinical trials, and could possibly also be adapted for other diseases for which a medical diet is the cornerstone. |
X Demographics
The data shown below were collected from the profiles of 6 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 1 | 17% |
| Unknown | 5 | 83% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 3 | 50% |
| Practitioners (doctors, other healthcare professionals) | 2 | 33% |
| Science communicators (journalists, bloggers, editors) | 1 | 17% |
Mendeley readers
The data shown below were compiled from readership statistics for 86 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 86 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Master | 10 | 12% |
| Other | 10 | 12% |
| Student > Ph. D. Student | 9 | 10% |
| Student > Bachelor | 7 | 8% |
| Student > Doctoral Student | 6 | 7% |
| Other | 10 | 12% |
| Unknown | 34 | 40% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 19 | 22% |
| Nursing and Health Professions | 6 | 7% |
| Computer Science | 5 | 6% |
| Psychology | 4 | 5% |
| Pharmacology, Toxicology and Pharmaceutical Science | 3 | 3% |
| Other | 10 | 12% |
| Unknown | 39 | 45% |
Attention Score in Context
This research output has an Altmetric Attention Score of 3. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 07 April 2020.
All research outputs
#14,003,371
of 24,417,958 outputs
Outputs from Journal of Inherited Metabolic Disease
#1,282
of 1,953 outputs
Outputs of similar age
#164,633
of 333,761 outputs
Outputs of similar age from Journal of Inherited Metabolic Disease
#16
of 45 outputs
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