Maayke Hunfeld

248 Chapter 8 Unresolved problems 5. and 6. Potential solutions 5. and 6. Standardized follow-up program 5-6a. Adult extension to the Erasmus MC pediatric follow-up program To find an answer to the unresolved problem of how children after OHCA will function on different domains in adulthood, our follow-up program needs to be extended into adulthood by designing a transition research protocol. As a start, we will design a cross-sectional study in which young adults aged 23-30 years are invited to the outpatient clinic for the assessment of cognitive functioning and academic achievements, physical functioning, health status, QoL and participation. An example of a design for this follow-up program is presented in Table 2. However, to develop this follow-up program more input is needed. Again, a focus group is warranted, including individuals who are/were involved in the patient journey of OHCA survivors (physicians, nurses, psychologists, social workers, patients, parents). From the different point of views of the various stakeholders, it should be possible to determine the outcome domains that matter. Domains Tests Performed by Health status and physical functioning Interviews physical and neurological exam Questionnaires regarding general health status and health perception Pediatric intensivist Pediatric neurologist Patient and parents/ caregivers Neurocognitive functioning Neuropsychological assessments Questionnaires regarding executive functioning Psychologist Patient and parents/ caregivers Motor functioning Motor function testing Physical therapist Quality of life Questionnaires regarding QoL and health- related QoL Patient and parents/ caregivers Mental health Questionnaires regarding mental health, behavior, social-emotional functioning Patient and parents/ caregivers Participation Questionnaires regarding participation in home, community, society, jobs, relationships Patient and parents/ caregivers Table 2. An example of design of adult follow-up program from the physician’s point of view. QoL= Quality of life