Beyond the Guidelines: How We Can Improve Healthcare for People With Tuberous Sclerosis Complex Around the World.
Access to care
Advocacy organization
Care coordination
Halth care delivery
Rare disease
TSC1
TSC2
Tuberous sclerosis complex
Journal
Pediatric neurology
ISSN: 1873-5150
Titre abrégé: Pediatr Neurol
Pays: United States
ID NLM: 8508183
Informations de publication
Date de publication:
10 2021
10 2021
Historique:
received:
13
07
2021
accepted:
20
07
2021
pubmed:
21
8
2021
medline:
22
2
2022
entrez:
20
8
2021
Statut:
ppublish
Résumé
Tuberous Sclerosis Complex International (TSCi) is a consortium of organizations that supports individuals with tuberous sclerosis complex (TSC) around the world. To improve care for TSC on a global level, TSCi identified the need to expand understanding about existing resources available in other countries, what individuals and caregivers value in TSC care, key gaps between needs and reality in each country, and ways these gaps can be addressed by advocacy organizations around the world. An iterative, mixed methods approach (the Improving Care project) was adopted to incorporate views from diverse members of TSCi. Through idea generation, a collection of qualitative open-ended responses and concept elicitation, we were able to build consensus where shared experiences and opinions were identified. The research performed as a part of the Improving Care project revealed a significant gap between the guidelines and what is actually available to people with TSC worldwide. Three key priority areas of action to improve this gap were identified: (1) implementation of the guidelines; (2) access to TSC expertise, and (3) coordinated and integrated health care. There are significant opportunities for key stakeholders, including organizations, clinicians, and researchers to improve care for individuals with TSC on both local and global levels. Working across stakeholder groups and utilizing TSC organizations are essential to ensure that the advances in TSC research benefit people living with TSC around the world.
Sections du résumé
BACKGROUND
Tuberous Sclerosis Complex International (TSCi) is a consortium of organizations that supports individuals with tuberous sclerosis complex (TSC) around the world. To improve care for TSC on a global level, TSCi identified the need to expand understanding about existing resources available in other countries, what individuals and caregivers value in TSC care, key gaps between needs and reality in each country, and ways these gaps can be addressed by advocacy organizations around the world.
METHODS
An iterative, mixed methods approach (the Improving Care project) was adopted to incorporate views from diverse members of TSCi. Through idea generation, a collection of qualitative open-ended responses and concept elicitation, we were able to build consensus where shared experiences and opinions were identified.
RESULTS
The research performed as a part of the Improving Care project revealed a significant gap between the guidelines and what is actually available to people with TSC worldwide. Three key priority areas of action to improve this gap were identified: (1) implementation of the guidelines; (2) access to TSC expertise, and (3) coordinated and integrated health care.
CONCLUSIONS
There are significant opportunities for key stakeholders, including organizations, clinicians, and researchers to improve care for individuals with TSC on both local and global levels. Working across stakeholder groups and utilizing TSC organizations are essential to ensure that the advances in TSC research benefit people living with TSC around the world.
Identifiants
pubmed: 34416612
pii: S0887-8994(21)00152-1
doi: 10.1016/j.pediatrneurol.2021.07.010
pii:
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
77-84Informations de copyright
Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.