Health care for children born extremely preterm with significant movement difficulties needs to be strengthened

There are a significant number of children born extremely preterm (before 28 weeks’ gestation), who present movement difficulties by the age of five and who are not receiving treatment, because of a lack of a formal diagnosis.

This is one of the conclusions of an international study, in which the Instituto de Saúde Pública da Universidade do Porto (ISPUP) participated. The study compared the care provided to children born extremely preterm in several European countries, including Portugal.

The research, published in the scientific journal Developmental Medicine & Child Neurology, was based on data from the European project EPICE-SHIPS, which has followed a number of children born very preterm in 2011 and 2012 in 11 European countries.

The paper involved 807 European children who were born before 28 weeks gestation.

The aim? To determine what proportion of children had motor problems, including cerebral palsy, at age five as a consequence of extreme prematurity, and to find out how many of these had received motor-related health care.

Through a questionnaire completed by parents when the children turned five years old, the researchers collected information on family characteristics, children’s health status, and health care use due to motor problems.

In addition, a team of therapists and psychologists assessed participants’ motor function.

And what did they conclude? Of the 807 children assessed, 21% were at risk of movement difficulties, around 25% had significant movement difficulties, and 11.4% had cerebral palsy.

Less than half of children with significant movement difficulties are receiving treatment

The research found that the majority (almost 90%) of children formally diagnosed with cerebral palsy were receiving treatment. However, only 43% of those with significant movement difficulties were being treated, and only a quarter of those at risk of motor problems was receiving appropriate treatment.

It was also concluded that when the child has only a motor problem, that is, without having simultaneously other developmental, behavioural or emotional problems, the probability of receiving treatment decreases.

For Raquel Costa, ISPUP researcher, first author of the article, and coordinator of the Perinatal and Pediatric Mental Health laboratory, of the associated Laboratory for Integrative and Translational Research in Population Health (ITR), “these results clearly show that there is a considerable disproportionality in the provision of care for children who have a diagnosis of cerebral palsy and among those who do not have a formal diagnosis of motor problems”.

What might explain this disparity in health care provision? The ISPUP researcher and the other authors of the study point out some hypotheses.

On the one hand, there is the parents’ lack of knowledge. “Some less serious motor problems affecting these children are sometimes neglected, especially if they do not cause a major impact on the child’s daily life, namely on his/her emotional state, nor on family dynamics. Furthermore, we must take into account the socio-economic conditions of the families, which do not always allow a visit to the doctor, if the problem is not serious”, indicates Raquel Costa.

On the other hand, the health professionals themselves, by not having specific guidelines for the follow-up of these children, may underestimate their motor problems, preventing a timely diagnosis.

The difference in care provision between European countries

The authors found differences in the way the European countries participating in the SHIPS project are following and treating children with significant movement difficulties. Although the study reported that 43% of these children received treatment, this percentage varied from country to country.

There are countries where the provision of care has been around 23% and others where it has been around 60%.

Let’s look at some examples. Comparing France, Portugal, Italy, and the UK, there are significant differences in care provision.  

In France and Portugal children with significant movement difficulties had a higher proportion of follow-up, whereas in Italy and the UK these children had a lower treatment rate.

According to Raquel Costa, the absence of international guidelines for the follow-up of these children may explain this variability.

“France and Portugal are countries that are providing more support and more treatment for movement difficulties in children. Both the French and Portuguese guidelines foresee the follow-up of children born very preterm until they are five years old,” says the researcher.

“Countries without guidelines or with poorly structured guidelines generally ensure a shorter follow-up period, normally until the age of two. However, until the age of two, some motor problems cannot be detected because the child is still developing. Therefore, the follow-up protocols end before the motor problem manifests itself”, she adds.

There is also a chance that some countries perform follow-ups beyond the age of two, but the protocols do not include motor function as part of the assessment. “The fact that we found that a child is more likely to receive motor care if one has associated emotional or behavioural problems is an indicator that movement difficulties are not given due importance. This approach is problematic because the motor function is very important and is associated with other developmental problems in children.”

The need to address gaps in health care delivery

This study shows that there is a gap in health care provision and that “it is necessary to take into consideration children who, despite not having a clear diagnosis of cerebral palsy, have significant motor problems and need medical attention, since they are not receiving the proper treatment for their movement difficulties. Here lies the biggest gap in terms of health care provision and therefore action is needed”, stresses Raquel Costa.

The researcher also reinforces the need to alert health services to the importance of conducting clinical evaluations of the child’s development in its entirety, so as to increase the recognition of these problems and improve specialised intervention in high-risk populations.

Recently, European standards for the follow-up of children born very preterm have been published which may in the future help to improve the recognition and management of their health conditions.

This study is entitled Motor-related health care for 5-year-old children born extremely preterm with movement impairments. The researcher Henrique Barros (ISPUP) also participated in the article, as well as researchers from France, Sweden, Belgium, Germany, Italy, Estonia, the Netherlands, and the United Kingdom.

The research was funded by the European Union’s 7th Framework Programme ([FP7/2007-2013]; agreement no. 259882) and by the European Commission – Horizon 2020 [agreement no. 633724].

Image: Unsplash/ Tuva Mathilde Løland

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