Joining forces against joint risks: structured care for vulnerable families in the Southwest of the Netherlands.

Vulnerable pregnant women and their families represent a major challenge in perinatal care. We define vulnerability as the presence of (1) psychosocial problems, (2) psychopathology (including parental problems in the past), and/or (3) substance abuse (smoking, drinking, illicit drug use, inappropriate use of prescribed drugs) together with lack of economic and/or educational resources. (the presence of any of 1,2 and 3 is assigned as PPS, see [1-3]) Adverse perinatal outcomes in this group of women are increased. The poor perinatal outcomes in urban areas like Rotterdam and the Hague are partly based on overrepresentation of PPS among pregnant women, in combination with low personal resource levels and insufficient provision of care[4]. Premature birth and a birthweight small-for-gestational age (SGA) are the primary adverse perinatal outcomes of interest, together with perinatal mortality. Another consequence of parental vulnerability, in particular in the case of adverse outcomes, is the subsequent risk for acute interventions by the service in charge of calls for child abuse and neglect (in Dutch 'AMK') [5][6]). In response to the ZonMw research program 'Pregnancy and birth' the perinatal units (from here: VSVs) in the Southwest of the Netherlands have joint forces, and have selected the above care challenge as primary focus of interest. The regional consortium consists of caregivers, scientific, governmental and educational stakeholders. Our project aims to find the best way to deliver targeted care in the above group of women. What is 'best' is judged by outcomes on the patient level and the VSV/practice level. The 7 tested study outcomes are: (1) better notifaction i.e. fewer vulnerable women with adverse child outcome (SGA, prematurity) being unnotified as 'high risk', (2) more vulnerable women having participated in preventive or supportive programs, (3) lower rates of prematurity, SGA, and (4) postnatal child events requiring 'AMK' involvement, (5) client satisfaction,(6) professional satisfaction, (7) organisational efficiency. We assume (1) better notification, and (2) higher care participation the primary outcomes for testing purposes, assuming downstream effects [5,6]. This project starts at the base of several ongoing local projects and activities in the Southwest of the Netherlands. To take full advantage from these projects participants have agreed to comply with a 5 phase research project. The first two phases aim at deriving best practices from these ongoing projects applying a formal measurement procedure, followed by a structured decision at the regional consortium level. The last three phases are dedicated to implementing the best practice approach, and measuring its effects. Phase 1 (mth0-mth18): for each VSV a careful uniform description will be obtained of current care to this group of women (base line measurement). At the patient level: flow data, process and outcome data. Vulnerability is recorded by a short validated instrument. Data collection >4 months. At the VSV level: description of practices along 6 features: (1) the present method to detect vulnerable women with PPS (2) the way women are guided to dedicated care, once qualifying for 'PPS+vulnerable'; (3) the way antenatal and postnatal maternal care for PPS is executed (by whom, how long), and the strategy to communicate risks e.g. to youth health care; (4) the degree to which VSVs apply joint decision making during (1),(2),(3); the method of case management; (5) the availability of procedures of VSVs towards preventive, and other caregivers downstream; (6) the availability of (or need for) additional organisational means (IT, personnel, finance, communication tools) to support care described under (1) to (3). Additional information on global costs, existing policies using a scenario method, barriers for change. Phase 2 (mth19-mth24): summary data are created on all units; provisional selection of best practices in the region through discussion of VSVs and others at consortium meetings. Hereof, a protocol is derived, clarifying what are 'essentials' and to what extent local adaptation is accepted. The minimal IT/PRN requirements are defined. Phase 3: (mth24-mth30) VSVs implement the selected best practice proposal(s), incl IT with consortium staff support; a pre-post design of data analysis is intended, hence a starting data is defined. Phase 4: (mth30-mth42) Data collection >4 months, preceded by a short run-in phase; patient, professional and organisational data as in Phase 1. Phase 5: (mth42-mth48) data analysis. Observational comparison of these options (pre-post per site, cross-sectionally pooled data), discussion, final report. Due to heterogenity in local availability of PPS services, and widely varying urbanization, a (cluster) RCT at Phase 4 is not feasible. Instead we apply observational analysis with maximal standardization of patients, procedures, and outcomes.