Table 1

Suggested timetable of follow-up for children and young people with Down’s syndrome

AgeMDT members Key points
6 monthsPaediatrician and MDTFull review*
Discuss genetics, if parents need advice regarding recurrence for future pregnancies, then referral to clinical genetics is advised
Encourage routine immunisations and annual influenza vaccine
Examination should include an examination of vision
1 yearPaediatrician and MDTFull review*
Ensure that you enquire about sleep related upper airway obstruction
Give information about cervical instability, cardiovascular, ENT and eye examinations
Enquire about behavioural issues and offer advice
Consider referral to Early Years education
2 yearsPaediatrician and MDTFull review*
Ensure you enquire about behaviour, educational input, cervical spine instability. Examination should include signs of cervical spine instability (ensure able to flex and extend neck normally), cardiovascular, ENT and eye examinations
3–5 years annual reviewPaediatric and MDTFull review*
Consider complex developmental problems and coexistent neurodevelopmental disorders
Some patients without complex health issues may be appropriate for nursing review after 5 years of age
6 years and yearly after thisNurseFull review* including dental care, access to services, financial issues, immunisations
In pubertal girls, enquire about menarche and menstrual management
School leaver review
(age 16–18 years)		Nurse and PaediatricianFull review
Requirements for ongoing care, further education or adult placements, fertility and need for contraception
Testicular examination—discuss if self-examination is appropriate or alternative arrangement as testicular tumours are more common in Down’s syndrome
Prepare full medical report for GP, carers and young person
Ensure heart auscultated
In Scotland, discuss guardianship (must be done well before 16 years)
Refer to adult learning disability team
GP will be coordinator of care usually. Refer to RCGP adult Down’s syndrome specific annual check list19

  • *Please refer to box 2 for what to include when doing a ‘full review’.

  • MDT, multidisciplinary team; RCGP, Royal College of General Practitioners.