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Specialist feeding clinics
  1. J W L Puntis
  1. John Puntis, Room 142, B Floor, Clarendon Wing, The General Infirmary at Leeds, Belmont Grove, Leeds LS2 9NS, UK; john.puntis{at}leedsth.nhs.uk

Abstract

Feeding difficulties are common in early life and in addition to causing considerable family stress may adversely affect growth and health. They are also a frequent feature of chronic childhood illness, particularly in neurodisability. While various different multidisciplinary approaches to assessment and management are described, none have been directed to managing the whole spectrum of feeding problems in children with and without underlying disease. Although specialist feeding clinics attempt to address a very clear need for expert help and support on the part of families and patients, few data have been published to establish the effectiveness of the interventions offered.

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In a study from the UK of nearly 1000 mothers, 40% reported some or great difficulty in feeding their infant by 15 months of age.1 In Sweden, Dahl and Sundelin identified feed refusal as one of the most common feeding problems seen in children under 1 year of age2; moderate to severe psychosocial problems were considered to be present in one third of families. Marked anxiety during the pregnancy, complications with breast feeding, and maternal psychosomatic illness were significantly associated with feeding difficulties, and a parental history of feeding problems in infancy was of major importance.3 At 2 years of age problems persisted in 50%,4 and refusal to eat was found to have had a negative impact on growth.5 Other studies have shown that prematurity and low birthweight, developmental delay, distress during feeding in the first 6 months of life, and regular or frequent vomiting are common findings on history taking in older children with severe eating difficulties, also indicating that early experiences with feeding have long-lasting effects and should not be too easily dismissed.6 Only a minority of problems will be underpinned by organic disease such as cerebral palsy, other causes of neurodevelopmental delay, structural disorders of the oro-pharynx, gastrointestinal dysmotility or illness requiring prolonged enteral tube or parenteral feeding.7

Where underlying medical conditions are complicated by feeding difficulties, many children will already be under medical supervision, but in some others, disordered feeding or growth faltering may be the first manifestation of organic disease. Assessment of feeding problems is therefore a complex process that can involve a wide range of different professionals including the speech and language therapist, psychologist, neurologist, gastroenterologist, dietician, nutrition nurse, paediatric surgeon and general paediatrician. Clearly a strong a priori case can be made for a specialist feeding clinic with a multidisciplinary team approach. Potential advantages include sharing of professional expertise and perspectives with mutual learning benefits, and from the family’s point of view, fewer hospital visits and easier access to the most appropriate personnel.8 However, multidisciplinary review is expensive in terms of professionals’ time, and in the era of NHS “modernisation” and payment by results, there may even be a perverse incentive for trusts not to support such clinics given that the alternative of multiple visits will attract multiple payments. Evidence of the effectiveness of specialist feeding clinics although currently sparse is therefore urgently needed if services are to be maintained and appropriately developed.

WHERE SHOULD CHILDREN WITH EATING PROBLEMS BE REFERRED?

An appreciation of the developmental course of normal feeding behaviour and appetite regulation is likely to be important in preventing minor problems becoming intractable.9 For those children not thought to have associated physical disorders, parents may be wrongly advised that the problem will be self-limiting, and therefore find it difficult to access specialist advice. This also reflects the fact that in some areas it is difficult to identify where expertise in feeding difficulties resides (although speech and language therapists play a very important role in this respect). The absence of consensus in the UK with regard to whom children with eating difficulties should be referred is mirrored by the lack of uniform services. Where feeding clinics do exist, they generally fall into two broad categories: those for children thought unlikely to have underlying disease, and those for children either with eating difficulty complicating recognised disorders (eg, neurodisability) or associated with symptoms such as vomiting, diarrhoea or weight faltering that suggest the possibility of underlying disease. The former may be run by a team headed by a psychiatrist or psychologist, and the latter by a paediatric gastroenterologist; crucial to both are speech and language therapists and dieticians. To some extent this dichotomy in clinics results from an artificial and unhelpful distinction between “non-organic” and “organic” feeding problems. In fact these categories often overlap, for example the child with short bowel syndrome who has been tube fed and now shows marked aversive behaviour at meal times, or the apparently otherwise healthy child with failure to thrive who has subtle oromotor dysfunction.10 In the latter hypotonic lips, incompetence removing food from a spoon, tongue thrust or persistent tongue protrusion and a weak or unsustained suck may go unrecognised unless feeding is observed by an experienced speech and language therapist trained in assessment. Specialist videofluoroscopy may also be necessary for some patients in order to assess the pharyngeal and oesophageal stages of swallowing and the presence of aspiration, since although clinical evaluation can reliably identify when fluids enter the airway, it is not so accurate for solid food.11 Despite a variety of multidisciplinary service models, it has been noted that none has set out with the objective of addressing the full range of underlying functional and organic abnormalities that may be affecting feeding and nutrition.12 A necessary starting point, however, is interested professionals coming together and supporting each other in providing a service13; for this reason, feeding clinics are likely to continue to take a variety of different forms.

DIFFICULT EATING BEHAVIOUR IN THE YOUNG CHILD

During the first year infants will try food because they are hungry, or because they are using their mouths to explore the environment. Later on, there has to be motivation to try new foods, and this usually comes from imitation of other people eating. In early childhood it is the presentation of safe and socially appropriate foods and their repeated ingestion that leads to them being liked. Children may refuse food for a range of reasons: lack of appetite; lack of experience at certain developmental stages; poor oral-motor skills; onset of the neophobic response (a “biologically protective” dislike of new foods) in the second year; distaste or disgust at some foods; individual differences in food acceptance; parental anxiety and forced feeding. Such problems cause considerable anxiety within families, and may or may not be associated with an energy intake that is insufficient to support normal growth.

There is no universally agreed classification for childhood feeding problems, but one categorisation includes mealtime tantrums, bizarre food habits, multiple food dislikes, prolonged subsistence on pureed food, delay or difficulty in chewing, sucking or swallowing, delay in self-feeding, pica, over-intake, under-intake and rumination.14 Medical conditions associated with the development of feeding problems include gastro-oesophageal reflux disease, respiratory and cardiac disorders, prolonged tube feeding and ear-nose-throat pathology. Given this array of potential underlying causes, it is clear that accurate diagnosis and management lies outside the expertise of any single professional group. Assessment must not only include medical and feeding history, clinical examination and nutritional status, but also an exploration of feeding behaviour in both child and carers15; observation of mealtimes is invaluable. A standard inventory of questions may be used as part of an initial screening evaluation7 and in the assessment of oral motor function.16

APPROACHES TO ASSESSMENT AND INTERVENTION

Harris and Booth describe the working of a multidisciplinary feeding team comprising a clinical psychologist, paediatrician, dietician, speech therapist and clinical nurse specialist in nutrition.7 One of the first tasks of the team when faced with a referral is accurate diagnosis and identification of any organic disease such as mild cerebral palsy. Wolke and Skuse agree that a team approach to both diagnosis and management of problems is essential, their team comprising a child psychiatrist/paediatrician, psychologist and speech therapist.17 Before any therapy is attempted, a structured assessment of the problem and of the precipitating and maintaining factors is carried out. Once the assessments are completed, a management plan is formulated at a team meeting.

Douglas and Harris (both psychologists) have described a day centre based behavioural feeding programme for young children and their parents.18 Referrals comprised children under 7 years of age with food refusal or failure to thrive for at least 6 months, where the eating problem was considered to be primarily behavioural. The initial assessment included a semi-structured interview and a video-taped lunch session of the family alone. Families accepted onto the programme attended one morning every 2 weeks for a maximum of 12 treatment attendances. Weight and height were monitored and the child’s activities in a playroom observed. Behavioural management strategies were discussed in relation to the specific eating behaviour of the child. In addition, family therapy approaches were used when appropriate. Simple dietary advice regarding how to increase calorie intake and which type and textures of foods to try was provided. Further observation of mealtime interaction between child and parents, and the child’s emotional reactions and behaviour towards food took place at lunchtime and a 1 h clinical team discussion was held at the end of the day. Around 60–70 cases were treated each year. Clinicians and parents completed evaluation forms at the beginning and end of treatment indicating the severity of a number of features of the child’s eating behaviour. Of 73 cases assessed in this way, 17 were being tube fed at referral. Significant improvements in ratings were found for quantity of food eaten, quantity drunk, textures eaten, food choice, behaviour towards food and interest in food. Weight gain improved, and in those being tube fed the number of tube feeds decreased. Treatment programmes were individually tailored and focused on behavioural management of the eating problems in some cases, while in others, complex family relationships called for therapeutic interventions.

FAILURE TO THRIVE

Children with failure to thrive are a heterogeneous group, and while inadequate food intake is the final common pathway in many, only a few will have eating difficulties as the primary underlying cause. Raynor et al reported a randomised control trial of specialist health visitor intervention for failure to thrive in children aged 4–30 months.19 The specialist health visitor role had been developed initially to support a clinical service for children referred with failure to thrive, and all children attended a paediatric consultant-led outpatient clinic. Despite the health visitor being trained in managing eating problems and nutrition, with advice available from a psychologist, dietician and paediatrician when required, their intervention over a year failed to produce any advantage in growth or diet compared with follow-up in a consultant paediatric clinic; more than 70% of children in both groups showed improved weight gain. Referrals to other professionals and the number of hospital admissions were substantially reduced in the intervention group; both parents and health professionals perceived the role of the health visitor to be extremely useful. Amongst other things, this study suggests that expert assessment of eating difficulties may qualitatively improve the experience of families with children who have eating problems as well as having an impact on health care utilisation. Interestingly, these findings echoed those of a north American study that had also failed to show an additional impact of home intervention on growth in children with failure to thrive.20

THE NEUROLOGICALLY HANDICAPPED CHILD

There are around 15–20 000 children with cerebral palsy in the UK, 50% of whom are reported to have feeding problems (rising to 85% in more severely affected children, eg, those with spastic quadriplegia). In an Oxford based community study of feeding and nutritional difficulties in children with neurological impairment, 89% needed help with feeding, 56% experienced choking with food, 38% of parents considered their child to be underweight, 28% reported prolonged mealtimes, 20% regarded mealtimes as stressful, and 64% of parents reported that to their knowledge feeding and nutritional status had never been formally assessed.21 Feeding difficulties in this group may have widespread consequences, adversely affecting growth, well-being and development in the child and engendering considerable stress within the family.22 An earlier study involving observation of mealtimes in the home found a similar prevalence of feeding problems, but contrary to maternal report, mealtimes were relatively brief making it difficult to achieve a satisfactory nutritional intake in those children with oral motor dysfunction.23 The resort to gastrostomy tube feeding can lead to significant improvement in nutritional status and fewer hospitalisations,24 without increasing the risk of respiratory morbidity from aspiration.25 However, the decision to undertake gastrostomy feeding requires careful consideration and should only be made following full consultation with parents. It may also be helpful to call on the expertise of a hospital based nutritional support team where this is available.26

Couriel and colleagues described their particular multidisciplinary approach to feeding problems in children with neurodevelopmental handicap.27 The core team comprised a neurologist, specialist speech therapist, respiratory paediatrician, radiologist and gastroenterologist. Only two or three children were seen per session and each met all members of the team. The speech therapist gathered information about feeding and swallowing, a detailed neurological examination was performed, and the respiratory paediatrician focused on whether there was evidence of significant respiratory disease, underlying causes and need for treatment. The gastroenterologist’s contribution was to assess growth and nutritional status and to offer advice on the management of gastro-oesophageal reflux; swallowing was visualised using fluoroscopy. The authors’ experience led them to believe that this service significantly reduced the stress of feeding and resulted in a substantial improvement in quality of life, and to recommend similar teams in other centres; little evidence was presented to support these conclusions.

In a similar clinic in the USA, referrals of children with neurodevelopmental disability were accepted for assessment of weight loss or failure to gain weight adequately over a 6-month period.28 The authors describe diagnostic evaluation and the effects of nutritional intervention in 79 children. Initial assessments included 3-day dietary record, videofluoroscopy, 24 h pH monitoring and upper gastrointestinal endoscopy. Gastro-oesophageal reflux was found in 56%, oropharyngeal dysphagia in 27% and aversive feeding behaviours in 18%. Interventions included medical anti-reflux therapy in 25%, fundoplication with gastrostomy in 23%, oral dietary supplements in 22%, behavioural therapy alone in 18% and gastrostomy alone in 13%. After 2 years of follow-up, energy intake, weight z scores and skin fold thicknesses (fat stores) significantly increased. There was also a reduction in acute hospital admissions, possibly related to the improved nutritional status. On this basis, the authors recommend a structured approach to managing feeding disorders in children with developmental disabilities.

CONCLUSIONS

Feeding disorders are common in early life, cause considerable stress within families and may adversely affect growth and health. They can occur in children without underlying physical illness, or be associated with oral-motor dysfunction, neurodevelopmental disorders, and chronic diseases that affect appetite or energy needs, or disrupt the normal development of feeding behaviour. Comprehensive assessment and management requires the experience of a number of different professionals. Multidisciplinary team working allows parents more rapid access to appropriate expertise. Despite these considerations, provision of specialist nutrition clinics is patchy and the ideal structure remains undefined. Time constraints and lack of expertise mean that clinics are likely to remain organised around the needs of either children perceived to have behavioural feeding problems or those with eating difficulties associated with underlying chronic disease. Broadening the composition of teams to include not only those professionals skilled in behavioural assessment and intervention but also paediatricians with an interest in feeding, growth and nutrition, offers clear potential benefits. Such a service might, for example, provide help for older children with chronic disease including adolescent diabetics using insulin omission as a way of weight control,29 or children with cystic fibrosis where feeding behaviour problems may compromise nutritional goals.30 Long-term outcome measures are essential if the benefits of interventions are to be objectively assessed. Ideally these should extend beyond physical growth to an evaluation of functional status, general health and quality of life.31

REFERENCES

Footnotes

  • Competing interests: None.