Article ; Online: How to measure patient and family important outcomes in extremely preterm infants: A scoping review.
Acta paediatrica (Oslo, Norway : 1992)
2024 Volume 113, Issue 6, Page(s) 1228–1235
Abstract: Aim: Parents of children born preterm have identified outcomes to be measured for audit and research at 18-24 months of age: child well-being, quality of life/function, socio-emotional/behavioural outcomes, respiratory, feeding, sleeping, and caregiver ... ...
Abstract | Aim: Parents of children born preterm have identified outcomes to be measured for audit and research at 18-24 months of age: child well-being, quality of life/function, socio-emotional/behavioural outcomes, respiratory, feeding, sleeping, and caregiver mental health. The aim was to identify the best tools to measure these seven domains. Methods: Seven working groups completed literature reviews and evaluated potential tools to measure these outcomes in children aged 18-24 months. A group of experts and parents voted on the preferred tools in a workshop and by questionnaire. Consensus was 80% agreement. Results: Consensus was obtained for seven brief, inexpensive, parent friendly valid measures available in English or French for use in a minimum dataset and potential alternative measures for use in funded research. Conclusion: Valid questionnaires and tools to measure parent-identified outcomes in young preterm children exist. This study will facilitate research and collection of data important to families. |
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MeSH term(s) | Humans ; Infant, Extremely Premature ; Infant ; Infant, Newborn ; Quality of Life ; Parents/psychology ; Surveys and Questionnaires ; Outcome Assessment, Health Care |
Language | English |
Publishing date | 2024-04-05 |
Publishing country | Norway |
Document type | Journal Article ; Review ; Research Support, Non-U.S. Gov't |
ZDB-ID | 203487-6 |
ISSN | 1651-2227 ; 0365-1436 ; 0803-5253 |
ISSN (online) | 1651-2227 |
ISSN | 0365-1436 ; 0803-5253 |
DOI | 10.1111/apa.17228 |
Database | MEDical Literature Analysis and Retrieval System OnLINE |
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