Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group.
Eur Heart J Qual Care Clin Outcomes
; 7(4): 354-365, 2021 07 21.
Article
em En
| MEDLINE
| ID: mdl-33576374
ABSTRACT
AIMS:
Congenital heart disease (CHD) is the most common congenital malformation. Despite the worldwide burden to patient wellbeing and health system resource utilization, tracking of long-term outcomes is lacking, limiting the delivery and measurement of high-value care. To begin transitioning to value-based healthcare in CHD, the International Consortium for Health Outcomes Measurement aligned an international collaborative of CHD experts, patient representatives, and other stakeholders to construct a standard set of outcomes and risk-adjustment variables that are meaningful to patients. METHODS ANDRESULTS:
The primary aim was to identify a minimum standard set of outcomes to be used by health systems worldwide. The methodological process included four keysteps:
(i) develop a working group representative of all CHD stakeholders; (ii) conduct extensive literature reviews to identify scope, outcomes of interest, tools used to measure outcomes, and case-mix adjustment variables; (iii) create the outcome set using a series of multi-round Delphi processes; and (iv) disseminate set worldwide. The Working Group established a 15-item outcome set, incorporating physical, mental, social, and overall health outcomes accompanied by tools for measurement and case-mix adjustment variables. Patients with any CHD diagnoses of all ages are included. Following an open review process, over 80% of patients and providers surveyed agreed with the set in its final form.CONCLUSION:
This is the first international development of a stakeholder-informed standard set of outcomes for CHD. It can serve as a first step for a lifespan outcomes measurement approach to guide benchmarking and improvement among health systems.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Avaliação de Resultados em Cuidados de Saúde
/
Cardiopatias Congênitas
Tipo de estudo:
Prognostic_studies
/
Qualitative_research
Limite:
Adult
/
Child
/
Humans
Idioma:
En
Revista:
Eur Heart J Qual Care Clin Outcomes
Ano de publicação:
2021
Tipo de documento:
Article
País de afiliação:
Estados Unidos