The role of multidisciplinary clinics in the management of children with EA

11 March 2013

The survival of infants born with esophageal atresia (EA) has improved significantly yet many children experience significant short and long-term morbidity associated with reduced quality of life and lower parental health perception scores. The burden of care, related to frequent radiological and surgical interventions, multiple medical reviews and admissions, often in the absence of coordinated care or support groups, remains a significant challenge for families.

As the mortality of this condition has decreased, several morbidities necessitating specific expertise have become obvious. Additionally, despite their complex needs, coordination of care between medical, surgical and allied health professionals remains suboptimal. A multidisciplinary clinic is optimally suited to address the special needs of the esophageal atresia patients.

Multidisciplinary care is a collaborative approach to treatment planning and provides continuity of care throughout the treatment pathway. A multidisciplinary clinic involves a group of expert healthcare professionals from different specialties who work together in one place for the effective treatment of the patient. It helps in the development of appropriate referral networks, reduction of service duplication, improved coordination of care amongst health professionals and development of clear lines of responsibility between members of the multidisciplinary team.

The ultimate goal of a multidisciplinary clinic is to meet the holistic needs of the patient despite limited resources. The aim of the clinic is to optimise care at different stages of the patient’s lives; improve quality of life and prevent/decrease complications. In addition to improving patient care these clinics also result in greater job satisfaction, motivation, improve communication and collaborative skills, support for difficult decisions especially when outcomes are negative, and are avenues of learning and educational opportunities amongst the health professionals who form the multidisciplinary team. Multidisciplinary clinics also create a platform for generating expertise and promoting research.

In 2011 we established a multidisciplinary clinic to address the multifaceted needs of children with esophageal atresia-tracheoesophageal fistula at Sydney Children’s Hospital. This is currently the only multidisciplinary clinic for children with EA in Australia. Sydney Children’s Hospital is also the only hospital in Australia that offers the “Foker Technique” to stimulate growth of the upper and lower ends of the oesophagus to treat cases of long gap oesophageal atresia.

The mission of our multidisciplinary clinic was to coordinate care of patients born with EA, optimise their care and decrease morbidity related to their condition and transition smoothly to adult health care physicians. Our clinic is committed to family-centred care and is dedicated to providing every patient with an individually designed treatment plan catering to his or her specific needs.
Our clinic members include a nurse coordinator, general surgeon, gastroenterologist, respiratory physician, Ear Nose Throat specialist, dietician, speech therapist, chest physiotherapist (who helps with lung function testing in addition to educating parents about chest physiotherapy) and social worker. When needed we have access to a cardiologist, urologist, orthopaedic specialist and geneticist. An appointment in the Clinic is not like a simple doctor visit. In one appointment consultations take place with multiple sub specialists in the team. The patient and their families therefore benefit from the care of leading medical specialists in the most convenient way. The presence of the social worker helps us in the recognition of emotional needs of patients and families. The clinic believes in caring for EA patients in partnership with the parents and parent support associations. We realise that parent support groups provide knowledge of day-to-day problems, psychological support, occasionally financial assistance, and raise money for research and development.
As part of this service at SCH, we organised an Annual Review (AR) assessment for each child designed to comprehensively evaluate the child’s needs. A one-year review of our clinic was presented as a poster in the recent International Workshop on EA at Montreal last year. It highlighted significant ongoing morbidity in EA children including suboptimal nutrition, eosinophilic oesophagitis and lung function impairment. 27% children had a new diagnosis made as a result of their AR assessment in the clinic. In 8 this was eosinophilic oesophagitis. Two children had polysomnographic evidence of obstructive sleep apnoea and 1 child had a tracheal diverticulum, which was associated with recurrent chest infections. New referrals were arranged for 46% children. The most common referrals were to the respiratory physiotherapist, and the sleep physician for assessment of upper airway obstruction. New surgical procedures, including gastrostomy closure, stricture dilatation and fundoplication, were performed in 22% children. Almost half of our patients required an increase in anti-reflux medication. A surprising finding was the high prevalence of eosinophilic oesophagitis (EoE) in EA children. Our clinic is the first to report this phenomenon with such a significant rate (1 in 5 children). Under-recognition of EoE may lead to ongoing symptoms indistinguishable from gastro-oesophageal reflux disease, excessive use of anti-reflux therapy and an escalation of interventions including fundoplication. Our results suggest that multidisciplinary care can be associated with comprehensive clinical assessment, increased investigation and improved management of complex co-morbidities in EA children.

In summary EA is a life-long condition, and the multidisciplinary clinic aims to provide a continuum of care throughout childhood and also provide a smooth transition onto adult medical care. The medical management embraces all aspects of the child’s evolving medical, feeding, growth and developmental concerns as well psychosocial development. Careful and long-term follow-up in multidisciplinary teams will help address respiratory and swallowing problems, nutritional support, and early recognition and treatment of gastrooesophageal reflux, strictures, tracheomalacia, and recurrent fistula. Longitudinal follow studies will provide vital information whether the establishment of multidisciplinary clinics will affect the natural history of the EA population.

Dr Usha Krishnan
Paediatric Gastroenterologist and Director of Motility Services,Sydney Children’s Hospital Conjoint Lecturer, School of Women’s and Children’s Health, University of New South Wales

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