Moldova-Swiss Modernizing Perinatology System Project
Follow up Services for Newborns with Chronic Health Conditions in Moldova
Von Ala Curteanu, Petru Stratulat and Adriane Martin Hilber / Schweizerisches Tropen- und Public-Health Institut (Swiss TPH)
Experience from Moldova shows the benefits of the neurodevelopmental follow up services for high risk children, and particularly premature newborns, to reduce future disabilities. With the on-going implementation of the Early Intervention Services, the quality of life of these children will improve.
Some babies are born with a variety of health problems that may result in chronic health conditions (CHC) affecting everyday life throughout childhood. A CHC is defined as a health problem which affects the child’s normal activities and requires frequent hospitalisation and/or home health care and extensive medical care. According to the statistics of some developed countries, the proportion of babies with CHC is about 15% to 18%. The magnitude of this problem is hard to estimate because CHC is an "umbrella" term and includes different illnesses such as asthma, diabetes, obesity, malnutrition, cancer and other problems. There also exist other health problems in babies who fall into CHC category such as developmental disabilities, cerebral palsy, epilepsy and the consequences of low birth weight (LBW) and prematurity, etc. Some of these conditions result in long term disability. In the Republic of Moldova there has been a noticeable increase in the disability rate among children from birth to 18 years from 16,3 per 1000 in 2002 to 19,7 per 1000 in 2012. Mental disorders and nervous system diseases are major causes of disability and together make up 42% of all childhood disability.
Pediatric assistance in the Republic of Moldova is provided in hospitals, as well as within the primary health care system. In addition to the family doctor (general practitioners), sick babies are supervised by pediatricians and other specialists. Sick babies are divided into follow up groups depending on the disease and its severity, and in case that the disease gets worse, they are then hospitalized. Thanks to reforms in the primary health sector, including pediatrics, standards of care for sick babies have now been elaborated and implemented.
The Moldova Ministry of Health (MoH) has adopted the live birth registration of newborns starting at a birth weight of 500g and a gestational age of 22 weeks in its official state statistics according to the WHO recommendations since the 1st of January 2008. This initiative was supported by implementation in neonatal intensive care of modern technologies for treating premature and sick babies. It was complemented by the creation of system of neurodevelopmental follow-up of high risk premature babies by the Moldovan-Swiss Perinatology Project (2006-2014). Along with the strengthening of neonatal intensive care, the Follow up Service was needed to monitor premature babies in the first two years of life in order to provide early diagnosis of developmental delays or mental illness. It also provides timely referral for babies with need for specific early intervention programs. Statistics from developed countries show that despite improving rates of survival for extremely premature newborns over the past two decades, the rate of disabilities has remained relatively constant, with up to 50% of these infants later exhibiting developmental disabilities. The Republic of Moldova created such a service to enhance the quality of life of these babies following the example of Switzerland and other developed countries. Previously in the Republic children started programs of correction and rehabilitation only at 3 years of age. This resulted in losing precious time, especially during the first year of life, when early correction can have maximum benefit and prevent severe forms of retardation or completely correct mild and moderate disabilities.
There are following 3 stages of the Follow up Service’s development: stage of creation, stage of regionalization and stage of its integration into other early intervention services.
Creation of Follow up Services
The National Follow up Centre was founded in 2007-2008 at the Mother and Child Institute (MCI) in Chisinau, the capital of the Republic to follow high risk children from all over the country. At this time it was endowed with medical equipment and standardized neurodevelopmental assessment tools by the Project. In parallel, the capacity of using these tools and specialized methods of diagnosis was strengthened.
The process of the Follow-up Service creation took place at the same time as the elaboration of a regulatory framework for its functioning, as well as clinical protocols for medical staff and informational materials (posters, leaflets) to explain to mothers/families about the benefits of the Follow up Program.
Among the documents elaborated was the Child Follow-up Card which is kept by the family and brought by the baby’s mother to each visit. This Card is important because it contains useful information for mothers such as care, nutrition, hygiene, and information on common health problems of premature babies. Mothers fill in data on their baby’s skills at different ages, which then helps specialists to assess the neurodevelopment of child.
The service was approved by the MoH in 2010. Given capacity and considering criteria of viability, the largest groups of patients at the Follow up Service are premature infants weighing up to 1500 g, although the Follow up Program includes also other categories of newborns.
Specialized services of these categories of babies are provided in two units of the Center related to monitoring and diagnostics. In the Monitoring unit babies at risk of developing neurological sequels are routinely assessed. Here specialists are performing neurodevelopmental assessments through internationally approved standardized assessment tools, as well as a general health assessment of the baby. The Diagnostic unit includes offices for different examination methods such as: ultrasound examination, hearing and vision screening, as well as electroencephalography (EEG). These specialized services are provided by different specialists such as neuropediatrician, audiologist, ophthalmologist, specialist in EEG, kinetotherapist, psychologist and speech therapist. These specialists perform a comprehensive neurodevelopmental examination at discharge at 3, 6, 9, 12, 18 and 24 months.
This unit has a database of babies enrolled in the monitoring program. Since 2008 1265 babies have been followed, of which premature babies with a birth weight of less than 1500 g make up 527 (41,7%) of babies. Compliance with the program of follow up visits is ensured by active calling of parents of these babies at home.
The regionalization stage
As the number of babies requiring surveillance increased, there has been a need to open another four regional centers (beside the National Follow-up Centre) in order to create a regionalized service for follow-up. The need for regionalization was based on the finding that babies from rural areas and vulnerable families had limited access to such services, and thus health and neurodevelopment problems are diagnosed late.
Currently only two Follow-up Centres from Chisinau and Balti municipalities are fully functioning providing services to children from the central and northern part of the country. It is planned to open two more centres in other regions of the country. The challenge in creating these centre is due to the need for additional trained medical staff in follow-up services.
Follow-up Centres depend on primary health care facilities to refer babies to be included in the Follow-up Program and for further support from other rehabilitation institutions.
Obstacles in the Service’s efficiency are the lack of a contract between the National Medical Insurance House and the Follow-up Centres, and sometimes less than efficient collaboration with primary health care facilities.
Integration of Follow-up in the Early Intervention Service
A Regulation-framework and minimum quality standards of Early Intervention Services (EIS) were elaborated recently. In 2013 they will be approved by the MoH and subsequently by the Government. The law on social inclusion of people with disabilities has been revised and since 2012 regulates early intervention.
The EIS is a system of integrated, specialized and multidisciplinary services provided to the child starting from birth up to 3 years of age and to the child’s family in case of developmental disorders or other health problems. The EIS system is based on effective partnership between professionals from medical, educational and social domains together with family members, which is carried out through activities using interdisciplinary teams.
The purpose of the EIS is to create an optimal environment for harmonious development of the child aged 0-3 years with special needs, to promote development (physical, intellectual, social and emotional), to improve family skills for ensuring care and the development of the child, taking into account his specific needs, to promote the idea of a partnership with the family through establishing support for social integration of the child and family, including information and counseling services.
The EIS for Children include a variety of other services beyond neurodevelopmental follow-up such as hearing and visual screening services. The most important of these services for children and families, aside from medical services, are social and psychological services. The social protection sector is quite new in Moldova. Since 2008 some reforms have been implemented. For example, the Strategy on Social Inclusion of Persons with Disabilities was approved in 2010 and the accompanying Law was approved in 2012. Although psychologists began to be trained in early 2000s, the number of psychological specialists in medical institutions is still extremely low; and there is no psychological consultation in primary care institutions. For the strategy and laws to be implemented more professionals with these skills and interest will have to be trained.
Once the Follow up Service becomes part of EIS, children from other risk groups (genetic diseases, autism, congenital abnormalities, exposure to drugs, alcohol, etc.) will be diagnosed by family physicians and referred for specialized services. In the future the Follow-up Service operation as part of EIS will strengthen and expand geographically, and will in parallel extend the period of follow-up for children from risk groups to 5 years of age to take into account a recent emphasis placed on educational measures to be achieved through follow-up support. Currently, financial support for these services are provided by the Government and international bodies, as well as some donors that are supporting the training and certification process of state institutions and NGOs for providing EIS.
Since the start of the Follow-up Centre program until now, the proportion of premature newborns with birth weight of less than 1500g in follow-up who have completed all visits within 2 years has increased from 35% to 49%. This is due to improvement in the education and information mothers are receiving from health professionals in the neonatal intensive care units at the Mother and Child Institute. Collecting data on these children through the Follow-up Centre has enabled us to accumulate national population-based level data on the improved health and neurodevelopmental outcomes of these children. The initial low numbers of cases monitored in the Follow up due to relatively limited access to the National Centre of children by socially vulnerable families will be overcome in future as the service expands in the regions.
In future, greater emphasis will be placed on information and education of mothers with children from high risk groups to change caretaking behaviors to include early intervention at home (e.g. massage or physiotherapy). This will reduce the level of anxiety in the family and increase confidence to raise and educate such children for better outcomes. Our experience shows that children from families that are proactive in conducting early intervention measures have better neurodevelopmental outcomes than children from families who have not worked to address their babies’ special needs.
In conclusion, the system of following-up high-risk children, in association with the modern technologies implemented within the neonatal intensive care of those children, is an important step to reducing the number of disabled children, ensuring their psychomotor and somatic development and preventing chronic health conditions in their adult life.
*Prof. Petru Stratulat and Assoc. Prof. Ala Curteanu are pediatricians-neonatologists working together at the Mother and Child Institute in Chisinau, Republic of Moldova. Prof. Stratulat is the Director for Research and Innovations and Dr. Curteanu is the head of the Perinatology Research Department. They are part of the Moldovan team implementing the Moldova-Swiss Modernizing Perinatology System Project. Adriane Martin Hilber, MPH, PhD is a Sexual and Reproductive Health Senior Specialist, SwissTPH and a leader of this project.