Periodic Reporting for period 2 - SHIPS (Screening to improve Health In very Preterm infantS in Europe)
Reporting period: 2017-03-01 to 2019-01-31
The Screening to Improve Health In very Preterm InfantS in Europe (SHIPS) project aims to improve follow-up programmes for children born very preterm in Europe by studying their impact on the children and their families. The project builds on the EPICE cohort- a European cohort of very preterm infants born in 2011/2012.
Very preterm birth is associated with motor and cognitive impairment in later life. About 50,000 infants in the EU survive very preterm birth every year and these children are at higher risk of cerebral palsy, visual and auditory deficits, impaired cognitive ability and behavioural problems than infants born at term. At initial discharge from hospital, the prognosis for each infant is unknown. Many children, even those with risk factors for poor outcome, will experience no health problems in childhood, whereas others may face serious challenges.
Follow-up screening and prevention programmes aim to identify problems early, enable interventions to improve outcome and to allow optimal management of health care. Despite the recognised importance of these programmes, very little is known about their actual application and impact.
The SHIPS project’s objective is to assess the availability, characteristics and impact of these screening and prevention programmes. It collects information on health, healthcare care and quality of life of very preterm children at 5 years of age as well as on programme coverage, ability to meet needs, health equity and costs at the population level. The project also aims to generate new knowledge about assessment tools and methods.
Very preterm birth is associated with motor and cognitive impairment in later life. About 50,000 infants in the EU survive very preterm birth every year and these children are at higher risk of cerebral palsy, visual and auditory deficits, impaired cognitive ability and behavioural problems than infants born at term. At initial discharge from hospital, the prognosis for each infant is unknown. Many children, even those with risk factors for poor outcome, will experience no health problems in childhood, whereas others may face serious challenges.
Follow-up screening and prevention programmes aim to identify problems early, enable interventions to improve outcome and to allow optimal management of health care. Despite the recognised importance of these programmes, very little is known about their actual application and impact.
The SHIPS project’s objective is to assess the availability, characteristics and impact of these screening and prevention programmes. It collects information on health, healthcare care and quality of life of very preterm children at 5 years of age as well as on programme coverage, ability to meet needs, health equity and costs at the population level. The project also aims to generate new knowledge about assessment tools and methods.
The SHIPS study followed up a cohort of children born between 22+0 and 31+6 weeks of gestational age (GA) in all maternity units in 19 European regions in 2011/2012. We re-contacted their families when the children were five years old.
Four studies were implemented: The Screening Organisation, Process and Content Study (#1) assessed the characteristics of national and regional follow-up programmes for children born very preterm. The Health and Wellbeing at 5 Study (#2) assessed health and child development, family wellbeing and use of health services using a parental questionnaire. The Neurodevelopmental Assessment Study (#3) assessed cognitive and motor development using a battery of standardised test administered by clinical psychologists for children born <28 weeks GA. The Qualitative study with parents (#4) explored families’ experiences of follow-up care.
Protocol development was preceded by scoping reviews to identify instruments for assessing child health, development, healthcare use and cost. This process revealed the major challenges of doing European research on follow-up of very preterm children, notably the absence of validated assessment instruments in all countries. The SHIPS final protocol was adapted to all 11 countries with input from our Parental Advisory Board. This protocol will be of high value for future European research on very preterm birth.
RESULTS (SEE DELIVERABLES 3.2 5.4 6.3 and 7.2 FOR DETAILED RESULTS).
The study of national and regional follow-up programmes documented wide differences in the regulatory environments, organization, financing and the norms for follow-up services (target populations, follow-up durations and types of assessments). Some countries had formal follow-up programmes, others had recommendations and some had neither. Few programme evaluations have been performed.
3674 children were included in the SHIPS studies (54.4% of surviving children) of which 1654 born <28 weeks GA had clinical assessments. 62 qualitative interviews were completed.
Our results depict a largely positive situation. A majority of parents rate their children’s health as good or excellent (about 90%) and their development as average or in advance (about 80%). The neurodevelopmental study corroborates these positive findings for a majority of children. Almost all parents reported that their child received follow-up care related to their preterm birth; 86.5% of responders gave a “good“ or “excellent” rating to the care provided to their children.
Along-side these positive outcomes, however, the study revealed families struggling because their children have severe impairments and health problems. Of concern, these parents were significantly less likely to rate their follow-up care positively. Among a sub-set of children, health service use was very high, as shown by use of multiple healthcare providers and a high number of visits. Even for children without severe problems, parents voiced multiple concerns about their health and development, notably related to behavioural and mental health issues. We found that 8% of children had received no follow-up which is an undesirable outcome. Use of follow-up services and parental appreciations showed important disparities by country of birth. Over 1000 parents responded to the free text question about how care could be improved and highlighted the need for longer-term follow-up, a focus on more than physical health and the lack of knowledge about prematurity among general practitioners.
The themes emerging from the qualitative study included difficulties experienced at the time of discharge; the coordination of follow-up, between health and development check-ups and specialist visits; the lack of a reference person; and especially the lack of a protected access to treatment for problems diagnosed during follow-up, with long waiting times. The overwhelming feeling towards follow-up was that it is useful and reassuring, both when the healthy development of the child is confirmed, but also when problems are diagnosed and named. The impact of barriers to care on the child’s care and parents’ life was stronger for the most fragile families with employment, financial and social difficulties.
Working groups were established for integrated analyses of the data from these studies, resulting in ten priority publications described in Deliverables 8.1 and 8.2.
SHIPS dissemination, outreach and parent involvement tasks were led by a parental organisation to ensure the active involvement of user representatives and parents. We developed information materials to inform key groups: researchers, healthcare professionals, parents/patients, politicians, general public (a fact sheet, leaflet, electronic SHIPS poster, thank you letters to parents, outreach in the monthly EFCNI newsletter, reaching about 10,000 parents, healthcare professionals, politicians). We created a toolkit with instruments for communicating and promoting the project (Illustration 3) translated into different languages. To establish the institutions and people that were relevant for action on project results, stakeholder mapping was done. Key EU stakeholders were involved throughout the project, including the informal EU Parliamentary interest group on maternal and neonatal health and relevant professional societies.
Four studies were implemented: The Screening Organisation, Process and Content Study (#1) assessed the characteristics of national and regional follow-up programmes for children born very preterm. The Health and Wellbeing at 5 Study (#2) assessed health and child development, family wellbeing and use of health services using a parental questionnaire. The Neurodevelopmental Assessment Study (#3) assessed cognitive and motor development using a battery of standardised test administered by clinical psychologists for children born <28 weeks GA. The Qualitative study with parents (#4) explored families’ experiences of follow-up care.
Protocol development was preceded by scoping reviews to identify instruments for assessing child health, development, healthcare use and cost. This process revealed the major challenges of doing European research on follow-up of very preterm children, notably the absence of validated assessment instruments in all countries. The SHIPS final protocol was adapted to all 11 countries with input from our Parental Advisory Board. This protocol will be of high value for future European research on very preterm birth.
RESULTS (SEE DELIVERABLES 3.2 5.4 6.3 and 7.2 FOR DETAILED RESULTS).
The study of national and regional follow-up programmes documented wide differences in the regulatory environments, organization, financing and the norms for follow-up services (target populations, follow-up durations and types of assessments). Some countries had formal follow-up programmes, others had recommendations and some had neither. Few programme evaluations have been performed.
3674 children were included in the SHIPS studies (54.4% of surviving children) of which 1654 born <28 weeks GA had clinical assessments. 62 qualitative interviews were completed.
Our results depict a largely positive situation. A majority of parents rate their children’s health as good or excellent (about 90%) and their development as average or in advance (about 80%). The neurodevelopmental study corroborates these positive findings for a majority of children. Almost all parents reported that their child received follow-up care related to their preterm birth; 86.5% of responders gave a “good“ or “excellent” rating to the care provided to their children.
Along-side these positive outcomes, however, the study revealed families struggling because their children have severe impairments and health problems. Of concern, these parents were significantly less likely to rate their follow-up care positively. Among a sub-set of children, health service use was very high, as shown by use of multiple healthcare providers and a high number of visits. Even for children without severe problems, parents voiced multiple concerns about their health and development, notably related to behavioural and mental health issues. We found that 8% of children had received no follow-up which is an undesirable outcome. Use of follow-up services and parental appreciations showed important disparities by country of birth. Over 1000 parents responded to the free text question about how care could be improved and highlighted the need for longer-term follow-up, a focus on more than physical health and the lack of knowledge about prematurity among general practitioners.
The themes emerging from the qualitative study included difficulties experienced at the time of discharge; the coordination of follow-up, between health and development check-ups and specialist visits; the lack of a reference person; and especially the lack of a protected access to treatment for problems diagnosed during follow-up, with long waiting times. The overwhelming feeling towards follow-up was that it is useful and reassuring, both when the healthy development of the child is confirmed, but also when problems are diagnosed and named. The impact of barriers to care on the child’s care and parents’ life was stronger for the most fragile families with employment, financial and social difficulties.
Working groups were established for integrated analyses of the data from these studies, resulting in ten priority publications described in Deliverables 8.1 and 8.2.
SHIPS dissemination, outreach and parent involvement tasks were led by a parental organisation to ensure the active involvement of user representatives and parents. We developed information materials to inform key groups: researchers, healthcare professionals, parents/patients, politicians, general public (a fact sheet, leaflet, electronic SHIPS poster, thank you letters to parents, outreach in the monthly EFCNI newsletter, reaching about 10,000 parents, healthcare professionals, politicians). We created a toolkit with instruments for communicating and promoting the project (Illustration 3) translated into different languages. To establish the institutions and people that were relevant for action on project results, stakeholder mapping was done. Key EU stakeholders were involved throughout the project, including the informal EU Parliamentary interest group on maternal and neonatal health and relevant professional societies.
This project contributes to progress beyond the state of the art in 4 main ways: (1) providing new knowledge for more effective follow-up policy and clinical care of children born very preterm (2) contributing to the improvement and development of tools and methods for assessing the health and development of children born very preterm, (3) reinforcing European research capacity on very preterm birth and (4) creating links between researchers and parents and parent advocacy groups.