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Table 6 Recommendations for long-term follow-up

From: ERNICA guidelines for the management of rectosigmoid Hirschsprung’s disease

Children with HSCR should receive regular follow-up to adulthood within the context of an interdisciplinary care team, led by a pediatric surgeon
• Follow-up should be more frequent during 1st year of life, but regular contact should be maintained 1–2 yearly thereafter
• Opportunities to engage multidisciplinary resources, including gastroenterologists, nutritional therapists, psychologists, physiotherapists, specialist nurses and social workers should be available
• Attention to development of wider areas of social functioning, including self-efficacy, coping skills and sexual functioning should be addressed
• Growth, nutrition and development should be followed
Level of evidence III
Strength of recommendation: Strong, for
Level of agreement: 100%
Access to care and specialist consultation should be available
• Patients should have a named surgeon in charge of their care and clear information about where and how they should attend follow-up, including in adulthood
• Instructions for where to seek emergency care should also be clearly defined
• Patient support organizations networks are active in many countries for information and peer support on lived experience of the disease
Level of evidence III
Strength of recommendation: Strong, for
Level of agreement: 100%
The introduction to adult medical disciplines should be prepared well before transition
• Discussions concerning long-term follow-up should be initiated around adolescence/puberty, and individualized care plans involving the appropriate disciplines should be formulated
• Maintaining continuity and consistency of the health care into adulthood is very important to patients
• Patients should be given sufficient information and increasingly engaged in decision-making regarding their healthcare with age
• The future care provider should be clearly identified, with an opportunity for staged transition and liaison with paediatric services during the transition phase.
Level of evidence III
Strength of recommendation: Strong, for
Level of agreement: 100%