Tube-Fed vs Orally-Fed Children with Early Childhood Feeding Disorders

Introduction

Early childhood feeding and eating disorders have a heterogeneous underlying etiology. Tube feeding is indicated when oral intake is inadequate, or intake of normal food is inappropriate to meet the patients’ needs [1]. This approach and working model are emphasized in the conceptual model of “pediatric feeding disorder (PFD)” that was created with reference to the WHO International Classification of Functioning, Disability, and Health [2]. The prevalence of tube feeding differs by countries and regions depending on local medical protocols and availability of special medical interventions [3]. In 2009, an Italian study found that prevalence of home enteral nutrition (HEN) was 3.47/100 000 in the pediatric population [4]. The yearly prevalence of HEN in Netherlands is 8.3–9.2/100 000 children [5,6]. In Hungary, reliable prevalence data are not available. Besides the investigation of medical causes, it is essential to explore individual, social, and environmental factors that contribute to each patient’s history. Furthermore, a multidisciplinary approach and cooperation are also regarded as important [7–11].

In the assessment of early childhood feeding disorders, actual symptoms and behavioral signs are evaluated considering the normal development of oro-motor and oral sensory skills. Normal development of the skills necessary for eating and drinking mostly takes place during the first year. If there is a disturbance in the developmental process in this sensitive period for any reason, the child’s oro-motor skills (eg, chewing) may not develop properly or the child may not learn to enjoy eating [8,12]. The development of eating skills and behavior is influenced by many individual and environmental factors.

Children with pediatric feeding disorders (PFD) are not always capable of eating safely by mouth. In these cases, oral feeding is not optimal and/or not efficient; therefore, tube feeding might be necessary to ensure meeting the child’s energy, nutrition, and fluid requirements [1,13]. Enteral nutrition (EN) is a safe means to ensure the child’s growth and development. When enteral feeding is necessary in the long term, home enteral nutrition (HEN) is initiated [4]. The reasons for tube feeding may be medical (organic) or due to feeding skills and/or psychosocial dysfunction [3,13,14]. Within the PFD category, Hopwood et al suggested separating children who require tube feeding for more than 2 weeks and who need routine collection of their health care data – a subgroup they refer to as pediatric feeding disorder–tube feeding (PFD-T) [15].

Although tube feeding facilitates the child’s participation in everyday life activities, the decision about this intervention always must consider health, psychosocial, and economic consequences for children and their families. Therefore, HEN should be avoided where possible, and when it is necessary, the focus should be on tube weaning at the earliest safe opportunity [5,13,15]. Ongoing care for families with tube-fed children, and tube weaning require multidisciplinary intervention [5,9,14,16]. If a treatable medical condition is causing the eating problem, the transition to oral feeding and tube weaning are expected and recommended.

The scientific literature has mostly focused on management of serious chronic medical conditions requiring several months of treatment, and there is limited information on short-term (less than 30 days) enteral nutrition [1,9,14,17,18].

Up to 400 children are referred yearly with a varying degree of feeding difficulties to the Early Childhood Eating and Sleeping Disorders Clinic in the Heim Pál National Pediatric Institute, Budapest, Hungary. First, a multidisciplinary team consisting of a pediatrician, a dietician, a speech and occupational therapist, and a psychologist assesses the child and parent(s). After a first assessment, other specialists are recruited if needed. The present report compares the care of a small number of patients who needed enteral nutrition (tube feeding) versus the care of a comparable number of orally-fed children who have also been referred to the clinic. We focused on short-term enteral nutrition and certain psychosocial factors that affect parents in caring for their children.

This study compared the clinical management and parental experiences of tube-fed children (PFD-T) versus orally-fed children with feeding disorders (PFD).

Material and Methods

Participants

PARTICIPANTS:

The study group (PFD-T) consisted of 11 children under 3 years of age with eating disorders who were treated at our clinic and required tube feeding. Enteral nutrition (EN) was used according to the recommendations of the European Society for Pediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) [1]. If multidisciplinary treatment of children with eating disorders was unsuccessful, we used tube feeding. We start tube feeding in an inpatient ward setting. A competent nurse teaches the parents how to use tube feeding, and the parents practice it and return home with good skills. The parents are provided written material on the daily process of tube feeding in writing and a telephone number that is available at all times, where a specialist can provide telephone assistance. As a comparison group (PFD), we selected 11 orally-fed children under 3 years of age who also received short-term treatment for an eating disorder (but with only 1 examination and 1 consultation) at the clinic. The age and gender of the comparison children were matched with those in the tube-fed group. When there were more matching cases, the choice was random (Table 1). The gender distribution was 9 girls and 2 boys in both groups.

INCLUSION CRITERIA:

We included children diagnosed with a feeding disorder by a pediatrician, gastroenterologist, or multidisciplinary team, received treatment at the clinic during the study period, and had complete medical and parental questionnaire data.

EXCLUSION CRITERIA:

We excluded children with congenital neurological disorders, severe structural abnormalities or chronic diseases requiring long-term tube feeding, children whose primary diagnosis was not a feeding disorder (eg, primary neurological impairment), and cases with incomplete medical or parental questionnaire data.

Data were collected from medical history questionnaires and documentation of patient visits between 1 July 2018 and 31 December 2020 [19,20]. In addition to the medical assessment and multidisciplinary intervention by our clinic, we conducted a questionnaire survey among the patients’ mothers. It examined the effect of the child’s feeding problem and its treatment on their mood, coping with difficulties that arise, the level of satisfaction with their child’s development, and the level of support from the parents’ social network.

QUESTIONNAIRES AND DOCUMENTATIONS:

Data included in this report.

FURTHER ASSESSMENTS:

Parents participated in the survey voluntarily. Anonymized questionnaires data were archived electronically under code numbers.

STATISTICAL ANALYSIS:

As the sample size was very small, the robust non-parametric Mann-Whitney test was used for the comparison of the 2 groups (IBM SPSS Statistics Version 29.0). In cases of significant differences, Cohen’s d values were calculated to estimate effect sizes using the Psychometrica online calculator (https://www.psychometrica.de/effect_size.html). Effect sizes over 1.0 are considered large, pointing to a substantive significance of the difference between the compared groups.

ETHICS APPROVAL:

The Institutional Ethics Committee of Pál Heim Children’s Hospital approved the study (authorization number: KUT 1/2017).

INFORMED CONSENT:

Informed consent was obtained from the parents of all individual participants included in the study.

Results

SAMPLE DESCRIPTION:

The parents were married or civil partners in both the PFD-T and in the PFD group. There was no significant difference in the financial situation of the families; most of them “make ends meet.” All children included in this report were born in a hospital; the type of delivery was 45% natural birth and 55% caesarean birth. Apgar scores were the same in the 2 groups, with 1 exception: 10/10 values were found in 2 children in the PFD-T and 2 children in the PFD groups, 9/10 values were found in 8 children in the PFD-T and 9 children in the PFD groups, and 1 child had an 8/9 Apgar score in the PFD-T group. Mean ages of children and mothers were similar in both groups. There were no significant differences between the 2 groups in the average number of children in the families or in the birth order of the children. There was no significant difference in mean birth weight and mean gestational age at birth between the 2 groups (Table 1).

CLINICAL ASSESSMENTS AND TREATMENTS:

The main parental concern in the PFD-T group was feeding disorder in 11 cases, and was associated with sleeping disorder in 1 case. In the PFD group, in addition to the feeding disorder, sleep disorders were mentioned in 4 cases, and excessive crying and fussing in 1 case. The duration of tube feeding varied between 1 week and 2 months in 9 cases. In 2 cases, tube feeding had to be used for longer periods of 1.5 years and 2.5 years, using a nasogastric tube (NG) or percutaneous endoscopic gastrostomy (PEG); these 2 children were eliminated from the calculations of the means in Table 2, where we show the onset of symptoms, time spent in treatment, and duration of tube feeding.

The PFD group was also assessed for medical conditions. Cow milk protein allergy was diagnosed in 3 cases, but the elimination diet could be ended for all of them by age 1. A 13-month-old child, who had difficulty eating solid food and had symptoms of aspiration, was diagnosed with esophageal stricture. Another child had been referred to an early intervention center because of a behavioral disorder.

In the PFD-T group, the assessment of the short-term EN cases (n=9) revealed the following medical conditions in the background of the eating disorders: cow milk protein allergy (which was still present at follow-up at 3 years of age, and was later associated with other food allergies), serious recurrent infections, pneumonia, zinc deficiency, chronic pulmonary disease, and, in 1 case, maternal psychological trauma (grieving process). Another child was referred to our clinic whose NG tube feeding was initiated in another institution, but as there were no further interventions, his transfer was initiated to our hospital’s inpatient ward. We treated the child and the family in the hospital. The therapy was based on individual behavior therapy, and parental anxiety reduction. Among the long-term EN cases (n=2), we found genetic disorder, cranial trauma, and serious behavioral disorder.

HEALTHCARE AND SPECIALIST CONSULTATIONS:

The treatment of the children with feeding problems started with a medical examination, usually followed by a consultation. Medical consultation included evaluation of the history, the parent’s subjective report, observation of the child’s cues and the child-parent interactions, in addition to evaluation of medical results. In the PFD-T group, 2–4 consultations were required in 5 cases and 6 families needed 5–8 consultations to successfully overcome their problems. Medical consultations were mostly required in when the eating disorder had a medical etiology.

Table 3 summarizes the types and frequencies of care provided for children in the PFD-T and the PFD groups. The families in the PFD-T group had significantly more visits to the clinic than those in the PDF group. There was a notable variability in the types of visits in the former.

The number of medical examinations was significantly higher in the PFD-T group, which could be explained by the need for more rigorous follow-up of the tube-fed children. It was especially true in the cases of a boy treated for recurrent pneumonia and upper-airway infections, and 2 in girls with poor weight gain who had cow milk protein allergy.

Multidisciplinary treatment was required only in the PFD-T group, but not in the PFD group (Table 3).

In the PFD-T group, a child psychologist was involved in the intervention for 7 cases – in 1 extreme case 44 sessions took place. Four of the 11 children needed 2–8 speech and occupational therapy appointments. The dietician assessed 3 children and had 1–2 consultations with their families (see Table 3 for the mean number of interventions).

Since further specialist consultations were required in the care of children with chronic medical conditions, in some cases several specialist appointments were part of the diagnostic assessment. This included gastroenterology, neurology, cardiology, immunology, hematology, otorhinolaryngology, and pulmonology. In the PFD-T group, 9 children had 16 appointments, in the PFD group 5 children had 7 appointments (Table 4). These specialist examinations and interventions were usually needed for treating chronic somatic problems (eg, cranial injury, genetic disorder, pneumonia, zinc deficiency, milk protein allergy, dysphagia) entailed by secondary feeding disorders.

MATERNAL QUESTIONNAIRE RESULTS:

Table 5 summarizes the significant findings from the maternal questionnaire. At the time of entry to the clinic’s program, mothers in the PFD-T group felt more tense, were less satisfied with the development of their child, and felt less able to cope with difficulties. In addition, they felt they had been less supported by their social network than parents in the PFD group.

WEANING FROM ENTERAL NUTRITION:

There was a large variation in time needed to achieve successful discontinuation of tube feeding. In 1 case, a previously tube-fed child was successfully weaned from the tube after 6 consultations in an inpatient setting for 1 week. For 6 other children, 10–18 visits to the clinic were required to relieve a serious eating disorder and ensure the children could eat safely by mouth. The longest intervention was the treatment of serious feeding refusal of a girl age 4 months at admission, who had 59 visits, of which 44 were psychological consultations.

One of the PFD-T children, who had a chronic neurological condition, needed long-term continuous treatment, and eventually had to be transferred to another institution. One patient who had previous cranial surgery due to an accident and was living with a PEG for 10 months, was successfully weaned from the tube following a 3-month-long multidisciplinary treatment.

Discussion

This report focuses on comparing data of small groups of tube-fed and orally-fed children collected as part of the research conducted in outpatient and inpatient care of the Heim Pál National Pediatric Institute, Budapest. In our study, the birth parameters (Apgar score, gestational age at birth, birth weight) had no significant correlation with the need for subsequent tube feeding. Two children in the tube-fed group were born prematurely, and all children in the control group were born full-term; however, mean birth weight was similar in the 2 groups. Demographic characteristics of the 2 groups (average maternal age, financial situation of the families, number and birth order of children, types of childbirth), were not significantly different between the PFD-T and PFD groups. Gosa summarized feeding practices and the availability of professional help in disturbed feeding development [21,22]. Olsen et al emphasized the importance of professional support of the parents [23]. In the PFD group, there were 3 children with signs of behavioral disorder who were extremely fussy; the parents were supported in the course of medical consultations by presentation of calming techniques and help with introduction of a daily schedule. The scientific literature has mostly focused on the care of serious chronic medical conditions requiring several months of treatment, and there is limited information on short-term (less than 30 days) enteral nutrition [1,9,14,17,18]. In our study, 9 cases required short-term complementary tube feeding due to the coordinated cooperation of the pediatrician, the child psychologist, the speech therapist, the occupational therapist, and the dietician. As a result, a child who had previously been tube-fed for weeks in another institution we successfully weaned from the NG tube within 1 week. Of the 4 children who required long-term tube feeding, we successfully weaned 3 from the tube. Several international publications have reported on multidisciplinary interventions for tube-fed children and have useful implications for pediatricians [24,25]. The development of our multidisciplinary teamwork procedure was based on our studies, experiences, and methods described in the scientific literature [5,14,25,26]. As pediatricians, we found that the knowledge and practices in the framework of infant and early childhood mental health (IECMH) were helpful in the treatment of early childhood eating disorders in general, and with tube-fed children specifically. We argue that besides the medical supervision of the child’s condition, the quality of life of the child and the wellbeing of the family also need attention [27–30]. Our results show (Table 3) that such complex medical consultation has been successful in weaning of multiple cases in the PFD-T group. Tube feeding is initiated in cases of serious eating disorder, leading to higher expected parental stress levels [31]. Wilken studied the impact of child tube feeding on maternal emotional state and identity [32], finding that stress and, importantly, trauma (trauma associated with food refusal and introduction of the tube) were common. In this context, parents need psychological support to be able to feed their children adequately. Parents of tube-fed children are affected by other psychosocial influences as well [13,32,33]. They are often insecure, scared, traumatized [34], and have high stress levels [5,31,32]. When asked about the reasons, among other things they referred to an insufficient level of support from their partner, family, and friends. Social networks and parental support systems (eg, a pediatric psychologist in the hospital) can have a major role in decreasing parental stress. This has been confirmed by some responses of mothers in the tube-fed group of our study: mothers felt more tense, less satisfied with the development of their child, and were less able to cope with the recent difficulties. They were asked about the perceived level of support from their family, friends and environment. Parents of tube-fed children felt that they received less support from their social environment.

Sharp et al [14] summarized the role of the psychologist in the multidisciplinary team, including ways they can help parents increase the acceptance of new food. Further intervention methods (parental behavioral therapy, anxiety reduction, structured mealtimes, social modelling, positive feedback) were effectively applied by Krom and colleagues [5]. In our cases, psychological diagnostic consultation included parental anxiety reduction, assessment and planning of parental coping strategies, and parent-infant consultation. This kind of psychological intervention was only required in the tube-fed group and, in several cases on many occasions.

Weaning from the tube is possible when oral intake ensures the child’s needs. The speech language pathologist (SLP), as part of the multidisciplinary team, has a fundamental role in deciding whether the child can eat safely by mouth. Sharp et al [14] and Gosa et al [22] summarized the role of the SLP and the occupational therapist (OT) in the team, such as supporting oral-motor coordination, improving the coordination of chewing and swallowing, promoting intake of foods with different textures, improving oral tolerance, and regularly consulting with the parents [5]. Our SLP and OT specialists primarily treated children with long-term tube feeding and developmental delay. The dietician’s job is to supervise nutritional intake, to balance the enteral and oral nutrition, and to educate parents. In the present study, the dietician was involved in the care of children on long-term enteral nutrition.

We compared the need for further specialist consultations in the 2 groups. Serious and/or chronic medical conditions are common in tube-fed children with feeding disorder [1,10,14,27,34,35]. Accordingly, children in the tube-fed group in our study (some of whom had chronic conditions of various severity) required significantly more specialist consultations.

Conclusions

STRENGTHS AND LIMITATIONS:

A strength of this study is its detailed comparison of tube-fed and orally-fed children within a single specialized feeding clinic, allowing for direct assessment of multidisciplinary care and psychosocial outcomes. Additionally, the focus on short-term enteral nutrition fills a gap in the existing literature, which has primarily examined long-term tube feeding.

However, several limitations should be acknowledged:

Data availability statement

The data can be requested from the corresponding author.