Beyond the Guidelines: How We Can Improve Healthcare for People With Tuberous Sclerosis Complex Around the World.
Pediatr Neurol
; 123: 77-84, 2021 10.
Article
em En
| MEDLINE
| ID: mdl-34416612
ABSTRACT
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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Contexto em Saúde:
11_ODS3_cobertura_universal
/
2_ODS3
Base de dados:
MEDLINE
Assunto principal:
Esclerose Tuberosa
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Saúde Global
/
Guias de Prática Clínica como Assunto
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Participação dos Interessados
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Acessibilidade aos Serviços de Saúde
Tipo de estudo:
Guideline
/
Prognostic_studies
/
Qualitative_research
Aspecto:
Determinantes_sociais_saude
Limite:
Humans
Idioma:
En
Revista:
Pediatr Neurol
Ano de publicação:
2021
Tipo de documento:
Article