Patient reported outcomes and experience measures in perinatal care to guide clinical practice: the first results.

Background: Patient reported outcomes and experience measures (PROM and PREM) provide an opportunity to prioritize patients' health goals in care decisions and quality improvement. In perinatal care, the use of PROM and PREM is scarce and limited to research and quality purposes. The International Consortium of Health Outcomes Measurement (ICHOM) published an outcome set for pregnancy and childbirth (PCB set), including PROM and PREM. In the Netherlands, the PCB set was implemented in a pilot project with the primary goal to integrate its PROM and PREM in clinical practice over the full course of pregnancy and postpartum care. To ensure continuity of care, the project was explicitly organized within integrated obstetric care networks (OCN): collaborating with all care professionals and organizations involved. Objectives: This study aimed to report first outcomes, experiences, and practice insights of implementing the PCB set in clinical practice of perinatal care. We assessed compliance to the PROM and PREM questionnaires, outcomes per domain, and clinical use of threshold values. Methods: Seven OCN across the Netherlands, each consisting of one or two hospitals and multiple community midwifery practices (2 - 18), implemented the PROM and PREM of the PCB set as part of clinical routine. This observational study included all women participating in the clinical project who gave informed consent for research purposes. The PROM and PREM were assessed with questionnaires at five timepoints: two during pregnancy and three postnatally until six months postpartum. Clinical threshold values (alerts) supported physicians interpretating the answers, indicating worrisome outcomes per domain. Data collection took place from February 2020 till September 2021. Questionnaires were assessed mostly digital - in one site on paper. Data analysis included missing (pattern) analysis, sum scores, alert rates, and sensitivity analysis. Results: In total 1923 questionnaires were collected across the five timepoints: 816 at T1 (first trimester), 793 at T2 (third trimester), 125 at T3 (maternity week), 170 at T4 (6 weeks postpartum) and 19 at T5 (6 months postpartum). Of these, 84% were filled out completely. Missing items per domain ranged from 0 to 13%, with highest missing rates for depression, pain with intercourse and experience with pain relief at birth. No notable missing patterns were found. Relatively high alert rates were found for urine incontinence (27%), pain with intercourse (25%), breastfeeding selfefficacy (23%) and mother-child binding (45%). Regarding PREM domains, most alerts were found for birth experience (23%), shared decision making (11%) and discussing pain relief antepartum (41%). Some domains showed very little clinical variation: mother role and satisfaction with care. Conclusions: The PCB set is a useful and acceptable tool to assess patient reported outcomes that need to be addressed over the whole course of pregnancy and childbirth. Our findings reveal a window of opportunity to improve and personalize perinatal care. Furthermore, based on our findings we could propose several recommendations about the methods and timeline of PROM and PREM measurement based. This study supports further implementation of the PCB set in clinical practice and the transformation towards patient centred value driven care. [ABSTRACT FROM AUTHOR]