Maayke Hunfeld

249 General discussion 5-6b. Future perspectives follow-up program We should not only extend the current follow-up program with follow-up into adulthood; the findings of the present PhD thesis offer an excellent opportunity to revise our existing follow-up program: 1. The study presented in chapter 7, focused on functional and neuropsychological outcomes in children after OHCA (for 2012-2017), but we did not describe the QoL and participation of these children. Parents and children were asked to fill in questionnaires in advance to the outpatient clinic visits 3-6 and 24 months after the arrest, but unfortunately the response rate was very low (<50%). The response rate might be improved by gently reminding parents to fill in the questionnaires, by explaining the aims of the questionnaires, and giving them the opportunity to fill out the questionnaires online during the visit. Moreover, striking information from the questionnaires should be discussed with parents and patients. When needed, parents and children should be offered support. For example, if parents have symptoms of post-traumatic stress disorder, we should refer them to an appropriate therapist. In our current follow-up program, all children are planned for neuropsychological assessment 3-6 and 24 months post-CA. Yet, we may wonder whether all children need to undergo the time-consuming neuropsychological testing. It may be more efficient to use stepped care: First, children, parents and teachers are asked to complete validated neuropsychological questionnaires with the purpose of screening for neuropsychological deficits. Second, when problems are reported, full neuropsychological assessment takes place. 2. When our follow-up program started in 2012, children and their parents were invited to the outpatient clinic 3-6, 12 and 24 months after OHCA. Recently we extended the program with visits at the child’s ages of 5, 8 12 and 17 years. It is essential to evaluate outcome at these ages. 3. As already mentioned, there is an urgent need of a ‘parent or family-empowerment program’ supported by motivated parents/family members who went through this experience. 5-6c. Standardized national and international follow-up program Our findings underline the need for a standardized follow-up program into adulthood as standard of care in OHCA survivors. In 2017, a Dutch national guideline was developed regarding follow-up after critical illness and PICU admission, but not specifically for OHCA children (80). This guideline recommends outpatient clinic visits 3 to 6 months after PICU admission, and in case of problems, 12 months post PICU admission. During these visits, parents and children are asked to fill in validated psychological and neuropsychological questionnaires. 8