Long-Term Outcome from the Parents' Perspective - Comparison of Children with Severe Paediatric Feeding and Eating Disorders by Comorbidities

Abstract Purpose This is an exploratory research on the long-term outcome of severe paediatric feeding and eating disorders as perceived by caregivers by comparison of comorbidity subgroups of the neurodevelopmental and behavioural field. Methods A consecutive sample (n=253, ICD-10 F98.2, received a 4-week inpatient eating intervention between 2009 and 2016) was questioned by a parent survey between May and October 2017. Main target parameters included age-appropriate eating, long-term improvement and satisfaction with treatment results. For analysis of outcome comorbidity subgroups are build and their characteristics compared. Results After a mean follow-up period of 3.5 years 103 cases were included after completion of the survey and subdivided into: 1) neurological comorbidities (“Neuro-group”, n=28), 2) behavioural comorbidities (“Psy-group”, n=24), 3) developmental delays without severe neurological or behavioural disorders (“DD-group”, n=22) and 4) without any neurodevelopmental or behavioural disorders (non-DNP-group, n=29). The non-DNP-group (normal development and low rate of comorbidities) achieved the best outcome from the parental view. The Neuro-group ranked lowest at age-appropriate eating at follow-up, while their caregivers experienced good life satisfaction and a surprisingly low burden of disease; they were similarly satisfied with previous treatment as caregivers of non-DNP-group. Surprisingly, caregivers of Psy-group described a comparatively poor long-term improvement, further experienced the lowest satisfaction with intervention results and the highest burden of disease. Conclusions Feeding and eating disorders are persisting for a long time in children with disabilities. It seems that caregivers of children with neurological disabilities adequately lowered their outcome expectations and developed better coping strategies. This stays in contrast to caregivers of children with behavioural disorders.