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. 2024 Jun;113(6):1228-1235.
doi: 10.1111/apa.17228. Epub 2024 Apr 5.

How to measure patient and family important outcomes in extremely preterm infants: A scoping review

Anne Synnes  1 , Mei Mei Lam  2 , M Florencia Ricci  3 , Paige Church  4 , Marie-Noelle Simard  5 , Jill G Zwicker  1   6 , Thuy Mai Luu  7
Affiliations

How to measure patient and family important outcomes in extremely preterm infants: A scoping review

Anne Synnes et al. Acta Paediatr. 2024 Jun.

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.

Keywords: health‐related quality of life; neonatal prematurity; outcome measures; patient‐centred outcomes research.

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References

REFERENCES

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    1. Sarda SP, Sarri G, Siffel C. Global prevalence of long‐term neurodevelopmental impairment following extremely preterm birth: a systematic literature review. J Int Med Res. 2021;49(7):3000605211028026.
    1. Albaghli F, Church P, Ballantyne M, Girardi A, Synnes A. Neonatal follow‐up programs in Canada: a national survey. Paediatr Child Health. 2021;26(1):e46‐e51.
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