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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.
This study aims to report first outcomes, experiences, and practice insights of implementing the PCB set in clinical practice.
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.
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.
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.
Currently, health care systems are moving toward high-value care, adapted to each individual patient [
Just as in other disciplines, perinatal care may benefit from systematic PROM and PREM assessment to enhance quality of care. Moreover, patient-reported outcomes of perinatal care, such as depression or incontinence, may have serious long-term consequences for the health of the mother and child and might currently be undervalued. The interest in, and use of, PROMs and PREMs has grown in perinatal care, but most PROMs and PREMs in this field are assessed anonymously for quality improvement or research purposes only [
The International Consortium for Health Outcomes Measurement (ICHOM) has published a core set of patient-centered outcome measures for pregnancy and childbirth (PCB set), proposing standardized measures of clinical outcomes as well as patient outcomes and experiences over the full cycle of care [
Pregnancy and childbirth outcome set: patient-reported domains and moments to measure (adapted from Nijagal et al [
In an implementation project across the Netherlands, 7 regions incorporated the PCB set in clinic over the full cycle of perinatal care with all care professionals involved. In the journey toward value-based perinatal care, the primary goal was to discuss individual PROMs and PREMs as part of regular care and use them for shared decision-making to personalize care accordingly (level 1 of value-based health care). Furthermore, aggregated PROM and PREM results could be used for patient-centered quality improvement (level 2 of value-based health care). During the project, we closely monitored first experiences and practice insights of the regions’ incorporation of patient-reported measures into routine perinatal care at an individual level. This study aimed to report compliance with the PROM and PREM questionnaires, the outcomes per domain throughout pregnancy and post partum, and the clinical use of threshold values. Our findings can support clinical implementation of value-based health care with the PCB set, accelerate the transformation toward personalized care, and contribute to governance of the PCB set to retain its international comparability.
An observational study was conducted to report and gain insight into PROMs and PREMs as part of clinical routine for personalized perinatal care. This paper is written following the Strengthening the Reporting of Observational Studies in Epidemiology checklist [
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 [
Implementation strategy per obstetric care network.
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Site 1 | Site 2 | Site 3 | Site 4 | Site 5 | Site 6 | Site 7 |
Time point 1: first trimester |
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✓ | ✓ | ✓ | ✓ |
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Time point 2: early third trimester | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
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Time point 3: maternity week |
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✓ | ✓ | ✓ | ✓ | ✓ |
Time point 4: 6 weeks post partum |
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✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Time point 5: 6 months post partum |
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a |
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✓ |
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✓ |
Collection | Stand-alone data capture tool | EHRb | EHR | Stand-alone data capture tool | Stand-alone data capture tool | Stand-alone data capture tool | Paper |
Hospitals | 1 | 1 | 1 | 1 | 1 | 1 | 2 |
Community midwifery practices | 3 | 2 | 13 | 2 | 2 | 9 | 18 |
Patient group | All | All | All | Women in vulnerable situations | Diabetes or history of CSc | GBS+d | Induction with AROMe by CMf |
aPlanned to implement at the end of the project period.
bEHR: electronic health record.
cCS: cesarean section.
dGBS+: urine sample positive for Group B streptococcus in pregnancy.
eAROM: artificial rupture of membranes.
fCM: community midwife.
Dutch perinatal care is organized in a 2-tier system.
Community midwives provide primary care for low-risk pregnancies and act as gatekeepers to specialist care. These midwives have their own professional autonomy, responsibilities, and financial arrangements.
For medium- to high-risk pregnancies, hospital-employed obstetric care professionals provide secondary or tertiary specialist care.
Of all women receiving perinatal care, up to 70% visit both health care tiers [
Over the last decade, a more integrated obstetric care system has been advised by the ministry of health, which is partly being realized by collaboration of both tiers in obstetric care networks.
Women receiving perinatal care at a participating organization were invited to complete PROM and PREM questionnaires as part of usual care. Women who additionally gave informed consent to use their answers for research were included in this study. Informed consent was obtained in the PROM and PREM questionnaire itself. As this study aimed to report outcomes of the PCB set as is, we report the results of all PROM and PREM questionnaires collected within the project period; no target size was predetermined.
The primary purpose of the BUZZ project was to use PROM and PREM questionnaires to guide individual perinatal care. Pregnant and postpartum women were invited to fill out questionnaires as part of routine care and their obstetric care professional discussed the answers in their next regular visit. The BUZZ project was explicitly organized within OCNs to ensure continuity of care over the full cycle of care for pregnancy and childbirth. The project team of each OCN made local decisions to enhance implementation in their practice on several key points (
Mode of administering questionnaires: some sites could capture questionnaires through their electronic health record (EHR), others used a stand-alone data capture tool, and 1 site used paper questionnaires (whatever at that moment was considered the most optimal to use the responses in their clinical setting).
Population and time points: most sites chose to start small by either selecting a few time points for PROM and PREM assessment or a specific patient group.
Site-specific adaptations: some sites made minor adaptations to the questionnaire content. For example, 1 site dismissed the screening questions for depression and used the full questionnaire in all women.
The PCB set’s PROM and PREM domains were captured as proposed by ICHOM with questionnaires at 5 time points during pregnancy and post partum (
Only the data of women who gave informed consent were uploaded by project leaders to a central and highly secure digital research environment. Data merging and analysis was performed on this secured server using R software (version 4.0.2; The R Foundation for Statistical Computing) [
The Medical Ethics Review Committee of the Erasmus Medical Center (MEC-2020-0129) declared that the Medical Research Involving Human Subjects Act (WMO) does not apply to this study. Therefore, it was exempt from formal medical ethics assessment. For each site, local approval was obtained from the regional ethics board.
In total, 1923 unique questionnaires were collected, most of them during pregnancy (
Moments of questionnaire completion (N=1923).
Time point | Value, n (%) | Moment of questionnaire completion, median (range) |
First trimester (T1) | 816 (42.43) | 15 (9-27)a |
Early third trimester (T2) | 793 (41.24) | 28 (23-37)a |
Maternity weekb (T3) | 125 (6.5) | 5 (4-5)c |
Post partum, 6 weeksb (T4) | 170 (8.84) | 3 (0-12)d |
Post partum, 6 months (T5) | 19 (1) | 27 (22-30)d |
aMoment occurred in weeks of pregnancy.
bThe exact moment of completion was missing for
cMoment occurred in days post partum.
dMoment occurred in weeks post partum.
Participant characteristics (N=1318).
Characteristics | Values | ||
Age (years), median (range); missing: n=77 | 32 (17-46) | ||
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Nulliparous | 360 (36.43) | |
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Multiparous | 628 (63.56) | |
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Western | 1057 (89.96) | |
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Other | 118 (10.04) |
Outcomes per patient-reported outcome measure domain.
Domain and subdomain | Time point | Value, n (%) | Score, median (range) | Alerts, n (%) | Missinga, n (%) | |
Social support | All | 1092 (56.79) | 3 (0-3) | 44 (4.06) | 7 (0.64) | |
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All | 1798 (93.5) | 37 (7-50) | 21 (1.17) | 1 (0.06) | |
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T1b | 816 (45.38) | 38 (7-50) | 6 (0.74) | 0 (0) | |
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T2c | 793 (44.1) | 37 (7-50) | 12 (1.52) | 1 (0.13) | |
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T4d | 170 (9.45) | 38 (14-49) | 2 (1.18) | 0 (0) | |
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T5e | 19 (1.06) | 37 (19-46) | 1 (5.26) | 0 (0) | |
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All | 1756 (91.32) | 0 (0-6) | 61 (3.52) | 25 (1.42) |
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T1 | 798 (45.44) | 0 (0-6) | 33 (4.19) | 10 (1.25) |
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T2 | 776 (44.19) | 0 (0-5) | 22 (2.85) | 5 (0.64) |
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T4 | 163 (9.28) | 0 (0-5) | 5 (3.27) | 10 (6.13) |
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T5 | 19 (1.08) | 0 (0-4) | 1 (5.26) | 0 (0) |
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All | 103 (5.36) | 10 (0-25) | 47 (52.22) | 13 (12.62) |
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T1 | 51 (49.51) | 11 (0-23) | 27 (52.94) | 0 (0) |
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T2 | 39 (37.86) | 7 (0-25) | 13 (44.83) | 10 (25.64) |
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T4 | 12 (11.65) | 12 (3-25) | 6 (66.67) | 3 (25) |
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T5 | 1 (0.97) | N/Ag | 1 (100) | 0 (0) |
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All | 1798 (93.5) | —h | 469 (26.91) | 55 (3.06) |
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T1 | 816 (45.38) | — | 150 (20.15) | 22 (2.7) |
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T2 | 793 (44.1) | — | 266 (34.64) | 25 (3.15) |
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T4 | 170 (9.45) | — | 45 (27.78) | 8 (4.7) |
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T5 | 19 (1.06) | — | 8 (42.1) | 0 (0) |
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All | 1798 (93.5) | — | 15 (0.86) | 57 (3.17) |
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T1 | 816 (45.38) | — | 3 (0.38) | 23 (2.82) |
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T2 | 793 (44.1) | — | 6 (0.78) | 26 (3.28) |
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T4 | 170 (9.45) | — | 6 (3.70) | 8 (4.71) |
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T5 | 19 (1.06) | — | 0 (0) | 0 (0) |
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All | 1798 (93.5) | — | 388 (22.26) | 55 (3.06) |
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T1 | 816 (45.38) | — | 149 (18.77) | 22 (2.7) |
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T2 | 793 (44.1) | — | 190 (24.74) | 25 (3.15) |
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T4 | 170 (9.45) | — | 44 (27.16) | 8 (4.71) |
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T5 | 19 (1.06) | — | 5 (26.32) | 0 (0) |
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All | 469 (24.39) | 6 (0-18) | 185 (39.45) | 0 (0) |
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T1 | 150 (31.98) | 6 (0-15) | 62 (41.33) | 0 (0) |
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T2 | 266 (56.72) | 5 (1-18) | 100 (37.59) | 0 (0) |
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T4 | 45 (9.59) | 6 (1-15) | 19 (42.22) | 0 (0) |
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T5 | 8 (1.71) | 7 (3-12) | 4 (50) | 0 (0) |
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All | 394 (20.49) | 3 (0-17) | 385 (97.96) | 1 (0.25) |
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T1 | 151 (38.32) | 3 (0-10) | 147 (98) | 1 (0.66) |
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T2 | 193 (48.98) | 3 (0-14) | 190 (98.45) | 0 (0) |
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T4 | 45 (11.42) | 3 (0-17) | 43 (95.56) | 0 (0) |
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T5 | 5 (1.27) | 2 (2-3) | 5 (100) | 0 (0) |
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All | 1005 (52.26) | 0 (0-5) | 229 (24.65) | 76 (7.56) |
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T1 | 816 (81.19) | 0 (0-5) | 161 (20.72) | 39 (4.78) |
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T4 | 170 (16.91) | 1 (0-5) | 59 (44.36) | 37 (21.76) |
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T5 | 19 (1.89) | 0 (0-5) | 9 (47.37) | 0 (0) |
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Breastfeeding intention | All (T2) | 793 (41.24) | — | 172 (22.4)i | 25 (3.15) |
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All | 314 (39.6) | — | 116 (39.46)j | 20 (6.37) |
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T3k | 125 (39.81) | — | 45 (36)j | 0 (0) |
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T4 | 170 (54.14) | — | 61 (40.67)j | 20 (11.76) |
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T5 | 19 (6.05) | — | 10 (52.63)j | 0 (0) |
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All | 765 (39.78) | 4 (1-5) | 175 (23) | 4 (0.52) |
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T2 | 596 (77.91) | 4 (1-5) | 150 (25.25) | 2 (0.34) |
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T3 | 80 (10.46) | 4 (2-5) | 13 (16.46) | 1 (1.25) |
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T4 | 89 (11.63) | 4 (1-5) | 12 (13.64) | 1 (1.12) |
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All | 175 (9.1) | 40 (4-64) | 124 (72.94) | 5 (2.86) |
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T2 | 150 (85.71) | 41 (14-64) | 104 (71.23) | 4 (2.67) |
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T3 | 13 (7.43) | 36 (12-54) | 11 (84.62) | 0 (0) |
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T4 | 12 (6.86) | 27 (4-52) | 9 (81.82) | 1 (8.33) |
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All | 288 (14.98) | 2 (0-11) | 122 (44.85) | 16 (5.56) |
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T3 | 125 (43.4) | 2 (0-8) | 56 (45.9) | 3 (2.4) |
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T4 | 163 (56.6) | 2 (0-11) | 66 (44) | 13 (7.98) |
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All | 1005 (52.26) | 4 (1-5) | 3 (0.31) | 40 (3.98) |
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T1 | 816 (81.19) | 4 (2-5) | 1 (0.13) | 26 (3.19) |
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T4 | 170 (16.91) | 5 (2-5) | 1 (0.64) | 14 (8.24) |
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T5 | 19 (1.89) | 5 (1-5) | 1 (5.26) | 0 (0) |
aCompletely missing.
bT1: first trimester.
cT2: early third trimester.
dT4: 6 weeks post partum.
eT5: 6 months post partum.
fOptional subdomain, dependent on screening question or questions.
gN/A: not applicable.
hAnswer options were yes or no; therefore, there are no median and range values.
iAlert means no intention to breastfeed.
jAlert means feeding baby only formula.
kT3: maternity week.
Outcomes per patient-reported experience measure domain.
Domain and subdomains | Time point | Value, n (%) | Score, median (range) | Alerts, n (%) | Missinga, n (%) | ||
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All | 982 (51.07) | 3 (1-4) | 4 (0.43) | 58 (5.91) | ||
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T2b | 793 (80.75) | 3 (1-4) | 4 (0.53) | 45 (5.67) | ||
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T4c | 170 (17.31) | 4 (2-4) | 0 (0) | 13 (7.64) | ||
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T5d | 19 (1.93) | 3 (2-4) | 0 (0) | 0 (0) | ||
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All | 982 (51.07) | 16 (2-16) | 101 (10.67) | 35 (3.56) | ||
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T2 | 793 (80.75) | 16 (2-16) | 82 (10.72) | 28 (3.53) | ||
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T4 | 170 (17.31) | 16 (2-16) | 17 (10.43) | 7 (4.12) | ||
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T5 | 19 (1.93) | 14 (4-16) | 2 (10.53) | 0 (0) | ||
Birth experience | All (T4) | 170 (8.84) | 30 (8-40) | 37 (23.27) | 11 (6.47) | ||
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Information ante partum | All (T2) | 793 (41.24) | 1 (0-2) | 310 (41.33) | 43 (5.42) | |
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Experience at birth | All (T4) | 170 (8.84) | 3 (1-4) | 4 (2.65) | 19 (11.18) | |
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During pregnancy | All (T2) | 793 (41.24) | 3 (0-5) | 56 (7.35) | 31 (3.91) | |
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At birth | All (T4) | 170 (8.84) | 4 (0-5) | 1 (0.66) | 18 (10.59) | |
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All | 963 (50.08) | 11 (4-12) | 55 (6.08) | 58 (6.02) | ||
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T2 | 793 (82.35) | 11 (4-12) | 49 (6.54) | 44 (5.55) | ||
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T4 | 170 (17.65) | 11 (4-12) | 6 (3.85) | 14 (8.24) |
aCompletely missing.
bT2: early third trimester.
cT4: 6 weeks post partum.
dT5: 6 months post partum
Of the 1092 women who were asked the social support question, administered at the first time point in pregnancy that each site had implemented, 44 (4.03%) scored an alert, meaning that they had 1 or no person near them to count on in time of difficulty. A comparison of T1 and T2 showed a slightly higher alert rate at T2 (17/25, 6.8%) than at T1 (26/815, 3.19%).
The quality-of-health domain, assessed with the Patient-Reported Outcomes Measurement Information System–Global Health Short Form, had few alerts at all time points. The alerts were based on the sum score; no alerts came from a high pain score. In additional analysis, calculation of subscores for mental and physical health showed no variation across time points.
In 3.52% (61/1731) of the women completing the 2-item depression screening (Patient Health Questionnaire-2 [PHQ-2]) an alert was scored, without variations over time. Women with an alert on the PHQ-2 filled out the full depression questionnaire (ie, Edinburgh Postnatal Depression Scale-10 [EPDS-10]). As 1 region dismissed the PHQ-2 screening questions, 29 women filled out the EPDS-10 directly. The EPDS-10 exceeded the clinical threshold in 52% (47/90) of the women, meaning that 2.67% (47/1760) of the women in the whole population screened positive for depression. The numbers with regard to the EPDS-10 results were too small to allow for interpreting variations over time.
The screening question for urine and flatus incontinence was positive in 1 of 4 women. This proportion was lower at T1 than at the other time points. Screening for stool incontinence was positive in 0.86% (15/1741) of the cases, mostly at T4 (6/162, 3.7%). The full questionnaires in case of a positive incontinence screening resulted in alert rates of 39.4% (185/469) on urine incontinence (International Consultation on Incontinence Questionnaire, Short Form) and 97.96% (385/393) on flatus or stool incontinence or both (Wexner scale). Women who screened positive for flatus incontinence but not to stool incontinence scored lower on the Wexner scale (median 3; range 0-11) than women who screened positive for stool incontinence with or without flatus incontinence (median 6; range 1-17). In 24.7% (229/929) of the women, an alert was scored on dyspareunia, with a lower alert rate at T1 than at the other time points.
During pregnancy, 77.6% (596/768) of the women intended to breastfeed their baby. After giving birth, 64% (80/125) of the women indicated that they would breastfeed their baby (fully or combined with formula) in the first week post partum, which decreased over time: 59% (89/150) at 6 weeks and 47% (9/19) at 6 months post partum. Of the 761 women who were breastfeeding (T3 or T4) or intended to (T2), 175 (23%) scored an alert on the screening question for confidence in breastfeeding. This alert rate was higher during pregnancy than during the postpartum period. After a positive screening question, the full breastfeeding self-efficacy questionnaire (ie, Breastfeeding Self-Efficacy Scale-10) gave an alert in 72.9% (124/170) of the cases.
The mother-child bonding questionnaire (Mother-to-Infant Bonding Scale) had a median score of 2 (range 0-11) and 44.9% (122/272) alert values. No difference was seen over time. The single question about confidence in the role as mother scored almost no alerts, and the median score was equal to the maximum score.
Before answering PREM questionnaires at T2 (early third trimester), the women could choose whether to give their care professional direct insight into their answers because the answers could affect the dependent relationship with their care professional. The answer to this question was not reported by all participating sites. We received data of 175 women, of whom 26 (14.9%) did not agree to share the answers of their PREM questionnaire directly with their caregiver.
This single-question domain, filled out by 924 women, scored almost no alerts, and the median score was 3 out of 4 (range 1-4).
Total scores were high, with a median of 16 (range 2-16) without variation over time. Still, the alert rate for this domain was 10.7% (101/947), based on a negative answer to one or more questions. Of the 101 women scoring an alert, 59 (58.4%) answered in the negative to just 1 of 8 questions. The alerts per question provided insight into direction for improvement, such as information provision about care decisions.
Assessed with the 10-item Birth Satisfaction Scale, Revised, at T4, this domain gave an alert in 23.3% (37/159) of the women and had a median total score of 30 (range 8-40). The Birth Satisfaction Scale, Revised, subscales scored a median of 11 (range 2-16) for stress, 14 (range 4-16) for quality of care, and 5 (range 0-8) for women’s attributes. Comparing women with and without an alert on the sum score, the subscales stress and women’s attributes decreased by 50%, whereas the subscale quality of care decreased by 21%.
During pregnancy, at T2, 41.3% (310/750) of the women indicated that the options for pain relief had not been discussed with their care professional yet. Post partum, most women were satisfied with the options for pain relief that were offered during childbirth.
Women were asked whether care professionals had engaged their partner enough in their care. This was insufficient for 7.4% (56/762) of the women during pregnancy and for 0.7% (1/152) during labor.
In total, 6.1% (55/905) of the women answered in the negative to one or more questions about continuity of care, with a median score of 11 (range 4-12). This domain had a slightly higher alert rate in pregnancy than during the postpartum period. In 96% (53/55) of the alerts, the women scored only 1 of the 3 questions negatively. Most alerts resulted from a negative answer to the question about knowing who their principal care provider was. In 23.5% (213/905) of the cases, the women had received perinatal care from just 1 care professional. Excluding these, the overall alert rate was 7.9% (55/692) and the median score 10 (range 4-12).
Overall, 84% (1615/1923) of the questionnaires were filled out completely. Per domain, the percentage of completely missing answers ranged between 0% and 13%, as presented in
This study reports the results of an innovation in perinatal care in the Netherlands: implementation of ICHOM’s PROM and PREM domains for pregnancy and childbirth to guide individual patient care in 7 OCNs. The large cohort resulting from this project showed good adherence to the questionnaires. In several domains, such as incontinence and breastfeeding, the high alert rates revealed opportunities to improve and personalize perinatal care for individual women on outcomes that matter to them. In addition, our results indicate that some measurement instruments and their timing as proposed by ICHOM are less suitable for clinical use. On the basis of these findings, we present several recommendations regarding the methods and timelines of PROM and PREM assessment in clinical practice.
Overall, adherence to the questionnaires was good, similar to PROM adherence when used for routine oncologic care [
Median moments of completion corresponded well with the timeline of data collection as proposed by ICHOM. In contrast to the provider expectations described by Chen et al [
Our findings in the mental health domain indicate that the first instrument of the 2-step screening (PHQ-2) is missing an unacceptable proportion of women at risk for depression, in line with the findings of Slavin et al [
In several domains, high alert rates revealed opportunities to adapt care accordingly and improve individual outcomes. For example, a high prevalence of incontinence and pain with intercourse was found over the course of pregnancy, as expected from previous research on these topics [
Regarding experience domains, 85.1% (149/175) of the women in this study agreed to making their individual answers to PREMs visible to their care professionals, but the remaining 14.9% (26/175) disagreed. These numbers both affirm the acceptability of individual PREM use and underline the importance of providing women an opportunity to choose, considering their dependent relationship with care professionals. In general, evaluating results of all women, the sum scores of the PREM instruments often did not differentiate very much, but separate answers gave valuable information about directions for improvement. For example, most alerts in the domains continuity and health care responsiveness resulted from negative answers to specific items: about knowing their principal care professional and information provision, respectively. In birth experience, the PREM with the highest alert rate, the subscales most affected in women with an alert on the sum score were stress and women’s attributes. Until now, the literature on individual PREM use to guide clinical practice has been scarce because anonymous use is mostly advocated, for quality improvement only [
Remove Patient Health Questionnaire-2 and use only the Edinburgh Postnatal Depression Scale-10 to screen depressive symptoms because current 2-step screening rules out too many women at risk for perinatal depression.
Use the first question of the International Consultation on Incontinence Questionnaire, Short Form, and first 3 questions of the Wexner scale as screening questions because they ask the same questions as the current screening questions. The current screening questions create an unnecessary response burden and have led to inconsequential answers.
Adjust the answer options or replace the instrument considering its relatively high missing rate and signs that the question is hard to understand.
Replace with another instrument because this single question does not differentiate between women who were confident and those who were insecure in their role as mother. As patients proposed this subject originally, it should be maintained in the pregnancy and childbirth set [
Remove or replace with another instrument because this question does not differentiate between women who were satisfied and those who were unsatisfied with their care or provide insight into the direction for improvements.
Measurement at T2 (early third trimester) is often too early because most perinatal care professionals discuss pain relief options later in the care path. We recommend involving patients to determine the optimal timing in pregnancy to discuss options for pain relief during childbirth.
Ask it at each time point because women’s social networks can change throughout pregnancy and post partum. This domain was originally designed as a casemix factor but is used in clinical practice also as an outcome to act upon.
Ask the woman whether her answers to the patient-reported experience measure questions may be made visible to her care professional individually because women are in a dependent relationship with their care professionals.
To our knowledge, this project was one of the first experiences with incorporating the complete PCB set into clinical practice to guide individual perinatal care. Although it was challenging, each participating site collaborated with a multidisciplinary transmural team of care professionals (part of an OCN) for implementation to ensure continuity of care over the whole cycle of care in a patient-centered approach. For this study, we have performed thorough additional analyses such as sensitivity analysis and appraisal of the use of screening questions, leading to practice implications for several domains. The sample size was large, and our results reflect the true clinical use of all patient-reported domains in the PCB set in various settings across the Netherlands. Nevertheless, because of this practical and local approach, nonresponders were not registered; therefore, we cannot report any response rates. In addition, variation over time in our results should be interpreted with caution because of different numbers of results per time point—especially, the numbers at 6 months post partum were too small to enable drawing any conclusions. Another limitation was the absence of questionnaire translations, restricting the participants to Dutch-speaking women only. Moreover, because no resources were available to support completion of the questionnaires, women with low (digital) health literacy are likely to be underrepresented, although women with language barriers or low health literacy probably have higher prevalence of pregnancy-related issues and thus greater opportunities to improve their outcomes [
On the basis of the first efforts to incorporate the PCB set into clinical practice, we have proposed several adaptations to its content and structure to better fit routine perinatal care (
This study shows that the PCB set is a useful tool to capture and discuss patient-reported outcomes and experiences that need attention during pregnancy, childbirth, and post partum. These are promising findings in the journey toward patient-centered, personalized, and value-based perinatal care. In the future, merging patient-reported data with clinical outcomes and casemix factors would be even more valuable to improve quality of health care both at an individual level and an aggregated level.
Overview of the pregnancy and childbirth outcome set: structure, scoring, and alert values.
Outcomes per domain and time point.
Missing rates per question.
Missing patterns per domain.
Dutch abbreviation of Discuss Outcomes of Pregnancy with the Pregnant Woman
electronic health record
Edinburgh Postnatal Depression Scale-10
International Consortium for Health Outcomes Measurement
obstetric care network
set of patient-centered outcome measures for pregnancy and childbirth
Patient Health Questionnaire-2
patient-reported experience measure
patient-reported outcome measure
Patient-Reported Outcomes Measurement Information System–Sexual Function and Satisfaction
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.
The contributors associated with BUZZ Project Team are as follows: Jolanda H. Vermolen, Maternity care organization De Waarden, Schoonhoven, the Netherlands; Simone A. Vankan-Buitelaar, Department of Obstetrics and Gynecology, Division of Obstetrics and Fetal Medicine, Erasmus MC Sophia, Rotterdam, the Netherlands; Monique Klerkx, Integrated obstetric care organization Annature Geboortezorg, Breda, the Netherlands; Pieter-Kees de Groot, Department of Obstetrics, Spaarne Gasthuis, Haarlem, the Netherlands; Nikkie Koper, Midwifery practice Duo, Zwanenburg, the Netherlands; Hilmar H. Bijma, Department of Obstetrics and Gynecology, Division of Obstetrics and Fetal Medicine, Erasmus MC Sophia, Rotterdam, Netherlands; Bas van Rijn, Department of Obstetrics and Gynecology, Division of Obstetrics and Fetal Medicine, Erasmus MC Sophia, Rotterdam, the Netherlands; Elise Neppelenbroek, Midwifery practice Verloskundigen Bakerraad, Zwolle, the Netherlands; Sebastiaan W.A. Nij Bijvank, Department of Obstetrics, Isala Clinics, Zwolle, the Netherlands; Marieke Veenhof, Department of Obstetrics, Leiden University Medical Center, Leiden, the Netherlands; Margot Lutke Holzik, Department of Obstetrics, Leiden University Medical Center, Leiden, the Netherlands; Jelle H. Baalman, Department of Obstetrics, Medisch Spectrum Twente, Enschede, the Netherlands; Josien Vrielink-Braakman, Midwifery practice Verwacht, Vriezenveen, the Netherlands.
ALD, MLdR, LTL, AF, HEES, and MNB designed the study. The BUZZ team performed the data collection in clinic. ALD and MLdR analyzed the data under the supervision of MNB. All authors interpreted the data. ALD wrote the first version of the manuscript under the supervision of MLdR and MNB. All authors revised all versions of the manuscript and approved the final version.
AF and MLdR were part of the International Consortium for Health Outcomes Measurement Pregnancy and Childbirth Outcome Set Working Group.