Health-Related Quality of Life and Distress of Parents of Children With Avoidant Restrictive Food Intake Disorder.

OBJECTIVES: Health-related quality of life (HRQOL) of children with avoidant restrictive food intake disorder (ARFID) is impaired. AIM: To measure HRQOL and distress of parents of children with ARFID. METHODS: Cross-sectional cohort study. Parents of children with ARFID, visiting our multidisciplinary feeding team, completed questionnaires on the online Quality of Life in Clinical Practice portal; the Questionnaire for Adult's Health Related Quality of Life to assess parental HRQOL and the Distress Thermometer for Parents. Reference groups of parents of healthy (HC) and chronically ill children (CIC) were used. RESULTS: Eighty-five mothers and 62 fathers of 89 children with ARFID (58% female, median age 1.9 years) were included (response rate 68%). No differences were found regarding HRQOL in 11 of 12 domains between parents of children with ARFID and HC. Mothers of children with ARFID reported significantly higher HRQOL regarding pain and fathers a significantly lower HRQOL on depressive emotions compared to HC. No differences were found in overall and clinical distress scores between parents of children with ARFID and HC/CIC. Mothers of children with ARFID had significantly higher distress scores regarding cognitive problems compared to HC and parenting problems in children <2 years compared to HC/CIC. Significantly higher distress scores on parenting problems in children <2 years were found in fathers of children with ARFID compared to HC/CIC. CONCLUSION: Most HRQOL and distress scores of parents of children with ARFID were comparable to reference groups. Since parents of children with ARFID perceive a lack of understanding and support from the environment, professionals should suggest peer support through patient's organizations. Furthermore, it is important to offer professional support since parents indicated that they would like to talk to a professional about their situation.

Long-term efficacy of clinical hunger provocation to wean feeding tube dependent children.

BACKGROUND & AIMS: The incidence of tube feeding dependency seems to increase worldwide, and these children may remain on prolonged tube feeding for many months to years. The multidisciplinary clinical hunger provocation (CHP) program is an intensive inpatient intervention of usually 2-3 weeks, aimed at weaning children from tube feeding. CHP has been proven highly effective on the short term (80-86%), particularly when applied before the age of two years but long-term data are lacking. The aims of our study were to determine the long-term efficacy of the CHP program and factors associated with success or failure and to assess anthropometrics, feeding behavior, and medical outcomes at long-term follow-up. METHODS: All tube-dependent children who underwent CHP at a tertiary hospital in Amsterdam, the Netherlands, between 2001 and 2014, and had a minimum follow-up of 12-months in 2015, were eligible to participate in this retrospective cohort study. During the CHP program, tube feeding is ceased stepwise to create appetite, according to a strict protocol. The program was defined successful if patients achieved oral intake and could be fully weaned from tube feeding following the CHP program. Acute malnourishment was defined as weight for height <2 SD or loss of >1 SD within 3 months, chronic malnourishment as height for age <2 SD and both acute and chronic malnourishment as both a height for age and weight for height <2 SD. Long-term efficacy (tube free at varying follow-up periods), anthropometrics (height for age, weight for height), feeding behavior and medical outcomes were assessed by a structured cross-sectional parental interview. RESULTS: In total, 57 patients were admitted to the CHP program. Fifty-two patients could be contacted of whom 42 participated in the study (response rate 81%) with a median age at admittance of 19 (IQR 13-22) months (62% female). The program was initially successful in 36/42 (86% (Bca CI 95% 75.0-95.2)) patients. A younger age upon initiation of tube feeding was negatively correlated with success (p 0.016). At follow-up, a median period of 67.0 (IQR 37.0-101.5) months after discharge, long-term efficacy was 32/41 (78% (Bca CI 95% 64.1-90.0)) (1 missing data). Patients with a successful CHP had beneficial outcomes compared to those with an unsuccessful CHP, showing less selective eating behavior (p 0.025), nocturnal feeding (p 0.044), forced feeding (p 0.044) and hospital admissions (p 0.028). However, 44% of successfully weaned patients fulfilled the criteria for malnourishment at long-term follow-up (13% acute, 22% chronic, and 9% both acute and chronic (compared to 22% at admittance: 13% acute, 6% chronic, and 3% both)). 59.4% of successfully weaned patients showed signs of developmental delays or were diagnosed with new medical diagnoses (43.8%) at long-term follow-up. CONCLUSIONS: The multidisciplinary CHP is a highly effective short-term (86%) and long-term (78%) intervention to wean young children from tube feeding, with beneficial feeding outcomes. However, at long-term follow-up, many successfully weaned patients were malnourished, showed signs of developmental delay, and were diagnosed with new medical diagnoses. For these reasons, patients should be monitored carefully during and after tube weaning, also after successful CHP. Tube dependency might be an early expression of medical diagnoses.

Prevalence and side effects of pediatric home tube feeding.

BACKGROUND & AIMS: Tube feeding ensures growth, but can have negative effects on health and psychosocial functioning, resulting in health related costs. The aims of this study were to determine the prevalence of pediatric home tube feeding in the Netherlands and to assess the clinical characteristics of tube fed children and side effects of tube feeding. METHODS: The prevalence of pediatric home tube feeding was calculated using data (2010-2014) of both the Medicines and Devices Information Project of the National Health Care Institute, and Statistics Netherlands. Subsequently, a cross-sectional parental online questionnaire was used to obtain data regarding clinical characteristics of tube fed children and side effects of tube feeding. Children aged ≤17 years receiving tube feeding ≥2 weeks were included. RESULTS: The prevalence of pediatric home tube feeding was 83-92:100,000 children/year. Parents of 279 children (53% boys) completed the questionnaire. Most children (88%) had ≥1 medical diagnosis, of which congenital abnormalities (42%), perinatal problems (38%) and neurologic diseases (16%) were most common. They had gastrostomy (60%), nasogastric (33%), or other tube types (7%). Parents of most children (74%) mentioned ≥1 side effect due to tube feeding. Vomiting (37%), lack of appetite (29%), and gagging (29%) were reported most frequently. Nasogastric tube placement resolved in negative experiences (94%). CONCLUSIONS: The prevalence of pediatric home tube feeding varies between 83 and 92:100,000 children/year in the Netherlands. These children are characterized by various underlying medical diagnoses. Side effects of tube feeding are frequently reported by parents. Further studies should focus on methods reducing side effects.