Communication with patients, continuity of care, and rebuilding trust are key factors in ensuring that young people with Down's syndrome do not get lost when transitioning from paediatric to adult care, according to new research.

The study published in the Journal of Applied Research in Intellectual Disabilities found that there are three distinct phases of transition - preparation, transfer and integration - and parents and professionals have concerns during each of them. 

As a result, the authors have proposed a new framework for the transition to adult care, which can be a challenging process for children, parents and healthcare professionals.

It proposes that the transition in medical care for children with Down's syndrome should be flexible, patient-centred and coordinated together with patients and parents. Only in ensuring continuity of care will individuals with Down's syndrome not get lost in transition.

Lack of communication resulted in negative feelings about the transition

The qualitative study was performed using semi-structured interviews with 20 parents of children with Down's syndrome and six healthcare professionals.

The aim of this study was to explore the experiences, concerns and needs of parents of children with Down's syndrome and of professionals regarding this transition.

It found that parents expressed the view that little information was available about the organisation of adult care. They indicated that they would like to receive more information, not only verbally, but also in terms of brochures or checklists instead of them having to figure out everything themselves. The lack of communication resulted in negative feelings towards the transition.

Warm handoff versus cold handoff

In the study, parents and healthcare professionals recognised three approaches of transition to adult care. The first approach was described as a ‘warm handoff’ in which the paediatrician, the intellectual disability physician, and the parents with their child were physically together at the actual moment of transition to adult care and discussed the entire medical situation.

The second approach was characterised as a ‘cold handoff’ in which the paediatrician, the parents and their child were physically together and only briefly met the intellectual disability physician without discussing medical information. The paediatrician and intellectual disability physician then had a separate meeting to discuss medical details.

The last approach was basically a ‘general handoff’ in which the paediatrician transfers all the child's documentation to the intellectual disability physician.

Appointing a healthcare professional to co-ordinate transition

Other concerns highlighted by parents included having to start all over again in providing medical history to healthcare professionals and the need for continuity of care. 

Their experience was that many changes in care providers impeded good coordination of care and the establishment of an essential trusting relationship. Parents often mentioned that before their child turned 18, they had limited contact with their GP because they considered the paediatrician as their ‘main’ physician.

After the age of 18, children and parents can no longer rely on the assistance of a paediatrician who simply must bow out of the care arrangement. As a result, continuity of care is not guaranteed, and parents often end up feeling lost in the transition process. Both paediatricians in the study believe that appointing a person who coordinates the transition might solve this.

The authors added: "We propose that there might be a possible role for a transition coordinator who guides transition of care. This professional would have an up-to-date overview of the complexity of different health problems of the child with Down's syndrome, an overview of the different healthcare providers involved, and help to find the healthcare needed.

"Literature shows that the presence of a coordinator who coordinates the entire process increases the chance of the transition's success."