Standardized outcome measures for pregnancy and childbirth, an ICHOM proposal

Malini Anand Nijagal, Stephanie Wissig, Caleb Stowell, Elizabeth Olson, Isis Amer-Wahlin, Gouke Bonsel, Allyson Brooks, Matthew Coleman, Shamala Devi Karalasingam, James M N Duffy, Tracy Flanagan, Stefan Gebhardt, Meridith E Greene, Floris Groenendaal, J Ravichandran R Jeganathan, Tessa Kowaliw, Marije Lamain-de-Ruiter, Elliott Main, Michelle Owens, Rod Petersen, Irwin Reiss, Carol Sakala, Anna Maria Speciale, Rachel Thompson, Oluwakemi Okunade, Arie Franx, Malini Anand Nijagal, Stephanie Wissig, Caleb Stowell, Elizabeth Olson, Isis Amer-Wahlin, Gouke Bonsel, Allyson Brooks, Matthew Coleman, Shamala Devi Karalasingam, James M N Duffy, Tracy Flanagan, Stefan Gebhardt, Meridith E Greene, Floris Groenendaal, J Ravichandran R Jeganathan, Tessa Kowaliw, Marije Lamain-de-Ruiter, Elliott Main, Michelle Owens, Rod Petersen, Irwin Reiss, Carol Sakala, Anna Maria Speciale, Rachel Thompson, Oluwakemi Okunade, Arie Franx

Abstract

Background: Value-based health care aims to optimize the balance of patient outcomes and health care costs. To improve value in perinatal care using this strategy, standard outcomes must first be defined. The objective of this work was to define a minimum, internationally appropriate set of outcome measures for evaluating and improving perinatal care with a focus on outcomes that matter to women and their families.

Methods: An interdisciplinary and international Working Group was assembled. Existing literature and current measurement initiatives were reviewed. Serial guided discussions and validation surveys provided consumer input. A series of nine teleconferences, incorporating a modified Delphi process, were held to reach consensus on the proposed Standard Set.

Results: The Working Group selected 24 outcome measures to evaluate care during pregnancy and up to 6 months postpartum. These include clinical outcomes such as maternal and neonatal mortality and morbidity, stillbirth, preterm birth, birth injury and patient-reported outcome measures (PROMs) that assess health-related quality of life (HRQoL), mental health, mother-infant bonding, confidence and success with breastfeeding, incontinence, and satisfaction with care and birth experience. To support analysis of these outcome measures, pertinent baseline characteristics and risk factor metrics were also defined.

Conclusions: We propose a set of outcome measures for evaluating the care that women and infants receive during pregnancy and the postpartum period. While validation and refinement via pilot implementation projects are needed, we view this as an important initial step towards value-based improvements in care.

Keywords: Consensus; DELPHI process; Delivery outcomes; Health outcomes; Obstetrics; Outcome measures; Patient-centred outcomes; Patient-reported; Perinatal health; Pregnancy.

Conflict of interest statement

Ethics approval and consent to participate

Quorum Review IRB issued a written determination of exemption for this study (Protocol Number: Exemption Determination - 30552).

Consent for publication

Not applicable.

Competing interests

FG declares that he is been expert witness in several cases of perinatal asphyxia and has received money from academic insitutions to give lectures on perinatal asphyxia. In addition, he has patent CA 2419302 A1: Use of 2-iminobiotin for the prevention or treatment of perinatal asphyxia in neonates licensed to Neurophyxia (www.neurophyxia.com/). RT declares that she is an editor of the book Shared Decision Making in Health Care: Achieving evidence-based patient choice (Oxford University Press, 2016) and will receive royalties from the sale of this book in the forthcoming year. RT is also an owner of copyright in several written works, including patient surveys and patient decision aids intended for use in routine maternity care delivery and research; she receives no income in relation to this intellectual property ownership. AB, AF, TF, TK, EO, SG, SDK, RP, JRRJ, MG, MC, MLR, MN, JD, IAW, IR, GB, EM, CSa, CSt, AMS, MO and SW have no competing interests to disclose.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Timeline for ICHOM Pregnancy and Childbirth Standard Set data collection. The following timeline illustrates when Standard Set variables should be collected from patients, clinicians or administrative sources

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