Patient-Reported Outcome and Experience Measures in Perinatal Care to Guide Clinical Practice: Prospective Observational Study

Anne Louise Depla, Marije Lamain-De Ruiter, BUZZ Project Team, Lyzette T. Laureij, Hiske E. Ernst-Smelt, Jan A. Hazelzet, Arie Franx, Mireille N. Bekker*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Background: The International Consortium for Health Outcomes Measurement has published a set of patient-centered outcome measures for pregnancy and childbirth (PCB set), including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). To establish value-based pregnancy and childbirth care, the PCB set was implemented in the Netherlands, using the outcomes on the patient level for shared decision-making and on an aggregated level for quality improvement. Objective: This study aims to report first outcomes, experiences, and practice insights of implementing the PCB set in clinical practice. Methods: In total, 7 obstetric care networks across the Netherlands, each consisting of 1 or 2 hospitals and multiple community midwifery practices (ranging in number from 2 to 18), implemented the PROM and PREM domains of the PCB set as part of clinical routine. This observational study included all women participating in the clinical project. PROMs and PREMs were assessed with questionnaires at 5 time points: 2 during pregnancy and 3 post partum. Clinical threshold values (alerts) supported care professionals interpreting the answers, indicating possibly alarming outcomes per domain. Data collection took place from February 2020 to September 2021. Data analysis included missing (pattern) analysis, sum scores, alert rates, and sensitivity analysis. Results: In total, 1923 questionnaires were collected across the 5 time points: 816 (42.43%) at T1 (first trimester), 793 (41.23%) at T2 (early third trimester), 125 (6.5%) at T3 (maternity week), 170 (8.84%) at T4 (6 weeks post partum), and 19 (1%) at T5 (6 months post partum). Of these, 84% (1615/1923) were filled out completely. Missing items per domain ranged from 0% to 13%, with the highest missing rates for depression, pain with intercourse, and experience with pain relief at birth. No notable missing patterns were found. For the PROM domains, relatively high alert rates were found both in pregnancy and post partum for incontinence (469/1798, 26.08%), pain with intercourse (229/1005, 22.79%), breastfeeding self-efficacy (175/765, 22.88%), and mother-child bonding (122/288, 42.36%). Regarding the PREM domains, the highest alert rates were found for birth experience (37/170, 21.76%), shared decision-making (101/982, 10.29%), and discussing pain relief ante partum (310/793, 39.09%). Some domains showed very little clinical variation; for example, role of the mother and satisfaction with care. Conclusions: The PCB set is a useful tool to assess patient-reported outcomes and experiences that need to be addressed over the whole course of pregnancy and childbirth. Our results provide opportunities to improve and personalize perinatal care. Furthermore, we could propose several recommendations regarding methods and timeline of measurements based on our findings. This study supports the implementation of the PCB set in clinical practice, thereby advancing the transformation toward patient-centered, value-based health care for pregnancy and childbirth.

Original languageEnglish
Article numbere37725
JournalJournal of Medical Internet Research
Issue number7
Early online date4 Mar 2022
Publication statusPublished - 5 Jul 2022

Bibliographical note

Funding Information:
This study was carried out as part of a project involving the implementation of the PCB set in Dutch perinatal care called the Dutch abbreviation of Discuss Outcomes of Pregnancy with the Pregnant Woman (BUZZ) project. In total, 7 regions across the Netherlands joined forces to implement the PROM and PREM domains of the PCB set in routine clinical practice. The implementation was supported by Zorginstituut Nederland and coincided with a nationwide ministry program to enhance value-based health care and shared decision-making [24]. Each participating region consisted of 1 or 2 hospitals and 2 to 18 community midwifery practices (Table 1) collaborating in local obstetric care networks (OCNs; refer to Textbox 1 for an explanation of Dutch perinatal care organization). Data were collected from February 2020 to September 2021.

Funding Information:
The authors thank all patients who gave consent to use their questionnaires for research. The authors acknowledge the local project teams and care professionals for their implementation efforts. This work was supported by Zorginstituut Nederland (2018026697). Zorginstituut Nederland was not involved in the study design, data collection, analysis and interpretation of data, writing the report, or decision to submit the article for publication.

Publisher Copyright:
© Anne Louise Depla, Marije Lamain-de Ruiter, Lyzette T Laureij, Hiske E Ernst-Smelt, Jan A Hazelzet, Arie Franx, Mireille N Bekker, BUZZ Project Team.


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