Interview with Dr Aleid van Wassenaer-Leemhuis and Professor Dieter Wolke on Follow-up and continuing care

Photo Credit (left to right): Dr Aleid van Wassenaer-Leemhuis (Amsterdam) and Professor Dieter Wolke (Coventry)

For preterm and sick babies, the follow-up after discharge from hospital and the care they receive during childhood is very important to monitor and support their development. We asked Dr Aleid van Wassenaer Leemhuis and Professor Dieter Wolke, the Chair Team of the Topic Expert Group on Follow-up and continuing care, some questions on important issues in the field.

EFCNI: What would you say are the most important topics in the field of Follow-up and continuing care?
Aleid van Wassenaer Leemhuis (AWL): For me, these are on one hand to start aftercare – including support in sensitive parenting – right after first discharge from hospital to home and on the other hand, setting up follow-up programs at least until the age of five years, to examine and support health, growth, and behaviour, neuromotor, sensory, and cognitive development of the child as well as parenting skills.

Dieter Wolke (DW): I agree. Parents who have sick or very preterm infants are often realistically worried about their offsprings’ health. The most vulnerable will require the most frequent follow-up assessments by different specialists and the many appointments can put a large burden on families. Thus coordinating and managing appointments by a case manager assisting distressed parents is important to not create more chaos but structured sanity for the families.
We also know that integrating and getting on with peers such as siblings or peers from kindergarten to school is very important to provide long-term support and happiness for at risk children. Thus future follow-up should have a much stronger focus on social cognition, emotion understanding and social skills.

EFCNI: Why are these topics so important?
AWL: Immediately after discharge home there is a combination of problems for infants and families: resolving neonatal diseases like BPD (Bronchopulmonary dysplasia), problems with feeding, feeding schedules, vaccinations, problems in tone and posture in the infant. At the same time, parents may be uncertain, tired, and in need of recovery time from the stress that may have lasted already from before child birth, when parents got to know the pregnancy complications that led to premature birth of their infant(s).

Early follow-up is important to diagnose severe disabilities and initiate referrals to specialised services.

At the age of five, mild disabilities in all domains occur frequently and often in co-occurrence. They can influence school career and relation with peers. But they also need to be placed in perspective so that they do not elicit a new phase of parental stress.

DW: In my view, early follow-up has three important functions: First, to diagnose conditions that are likely to be chronic across development (e.g. severe disease; cerebral palsy, cognitive impairment, autism etc.). This is important to provide guidance to parents and manage expectations. Second, to provide feedback and appropriate guidance and support for those with mild impairment where treatment may improve the condition itself rather than manage it appropriately (mild cognitive or learning problems, speech problems, lack of some social skills etc.). And third, to provide assistance to parents at critical times such as the transition into nursery care, kindergarten or school.

EFCNI: What are the major challenges in Follow-up and continuing care in Europe?
AWL: There are great differences between countries in Europe. To conceive a level of care and understanding by families, healthcare professionals and governments that integrates all the aims mentioned in response to the first question is not an easy task.

DW: I agree with Aleid’s statement. But I would like to highlight another major challenge for the future: The need to re-consider and redesign follow-up care to be more evidence-based and includes increased inter-disciplinary communication. For example, much focus has been on motor development and physical health, both very important areas to be retained. However, quality of life and life satisfaction of parents and their children is strongly dependent on children’s mental health, their social integration and social relationships with peers, support in talking to parents and having a school path. These aspects may not always be considered in follow-up care and require different expertise from psychology to educational support. Thus a challenge is to align and re-organise follow-up care according to evidence base on major influences on the development of preterm and sick infants and to have parent and patient involvement in planning such services.

EFCNI: How would you wish the field to develop? What is your wish for the future of the field of Follow-up and continuing care?
AWL: Care and research should go hand in hand. It is not always clear which interventions may be of benefit to the infant and families and at which age they should be started. Comparing programs and setting up cross-border research on interventions is a good way to proceed.

DW: I have three wishes. I would wish that:
1. Follow-up care should leave the silos of professions involved in care but focus solely on the needs of the children and their families. Thus medical, psychological and educational support need better integration and joint up working.
2. The involvement of care planning starts already in hospital. Doing so (e.g. case manager) would help to individualise follow-up care – some families need very little, others more support and guidance. This would help to use limited resources better.
3. Interventions and referrals should be more evidence based. Some traditional methods used have not demonstrated their benefit but continue to be employed.

View more: European Standards of Care for Newborn Health project