This paper addresses differences in parental assessment of long-term outcomes of severe paediatric feeding and eating disorders by comparing subgroups with prevalent neurological, developmental and behavioural comorbidities. The characteristics of patients in these subgroups were examined for the interpretation of results. Intellectual and neurological disabilities as well as neurobehavioral problems were found to be relevant for a poorer long-term outcome with regard to aspects like age-appropriate eating or burden of disease perceived by the parents. Positive factors are normal development, absence of severe neurological and behavioural conditions and early age at treatment. Prematurity and low birth weight may contribute to the development of early eating disorder [19], but seem to have no negative impact on the long-term outcome when complex neurological or behavioural conditions are absent (Non-DNP-group).
Comparison of outcomes with the existing literature is limited because insufficient details on patient characteristics and symptom severity (e.g. developmental delay) are provided as noted in a recent meta-analysis [15]. The heterogeneity of outcome measurements poses additional challenges [15].
Schadler et al. [3] analysed a population of preterm born children presenting similar comorbidities as in the present study (neurological impairment, developmental delays and interaction problems) who achieved in 61.6% (52 of 83 patients) an overall long-term obtainment of the initial treatment success after a median follow-up of 3 years. However, subgroups have not been analysed.
With respect to the complex and severe comorbidities in this study, it seems reasonable that the frequency of successful tube weaning is relatively low (57.8%) compared to the literature, e.g. with 80% of 414 patients by follow-up (95% CI, 66%-89%) [15]. This stays in line with literature describing a worse outcome in children with neurodevelopmental issues or other comorbidities like metabolic diseases [14, 20], which is, however, not stated in all studies [8]. Marinschek at al. [8] described a tube weaning rate of 92.3%, independent of comorbidities like genetic syndromes (26%), prematurity (23%), CP (7%) and ASD (6%), after a follow-up period of 1 to 6 years in a sample of 266 participants. At the same time, 68% ate an age-appropriate diet at follow-up and only few ate selectively (12.5%). However, the numbers of children with neurodevelopmental and neurobehavioral issues were possibly too small to detect significant differences. No information was provided on severity.
There are two studies consisting of populations with prevailing gastrointestinal comorbidities using a similar outcome measurement [21, 22]. A trial with a follow-up period of approximately one year examined the outcome of 67 patients with a similar 5-point Likert scale reaching a good improvement in 97% (Likert scale 4–5 of 5) hereafter [22]. A randomized-controlled trial conducted in the same clinic regarding a five day long intervention, reported after a short follow-up (mean 36 days, 3 Missing Data) a mean result of 3.6 on a 5 point Likert scale for age-appropriate “normal” eating in the intervention group (n = 10) [21]. The mean of 4.04 on a 10 point Likert scale and a much longer follow-up period in the present study, raises the question whether the study samples are comparable. This supports the hypothesis that eating disorders in children with medical problems like congenital heart diseases, GERD and other gastrointestinal comorbidities have better outcomes than those with neurodevelopmental and behavioural comorbidities.
There are indications that general life satisfaction is lower among caregivers of children with major behavioural comorbidities (Psy-group) who, at the same time, show the poorest long-term outcome. In contrast, it is surprising that parents of children with multiple severe disabilities (CP, mean GMFCS 4.5) perceive such a positive outcome and high satisfaction with previous inpatient treatment, despite the poor long-term outcome with respect to age-appropriate eating. Moreover, parents of children with severe CP (Neuro-group) described an average life satisfaction. This may be interpreted that these parents have developed good coping strategies and appropriate long-term expectations with respect to the limited ability of improvement in their severely handicapped children. On the other hand, we suggest that the caregivers of children with behavioural comorbidities and to some extent also parents of children with developmental disabilities, mainly caused by genetic syndromes may need more coaching in order to work on realistic goals and coping with eating problems of their children.
Limitations
The strength of this study is the large sample size with a wide range of comorbidities and a long follow-up period. Limiting factors include the age range and the varying follow-up time among the participants. Certainly, the sample shows a bias towards neurodevelopmental disorders and disabilities with a fairly low prevalence of gastroenterological and surgical cases. Based on these findings, a prospective longitudinal study would be useful to examine more precisely the influence of comorbidities on the prognosis of eating disorders in childhood. The outcome is based on a subjective rather than an objective assessment. However, given the heterogeneity of comorbidities, a subgroup comparison was only possible using the method of a parental survey.