The management of children with chronic fatigue syndrome-like illness in primary care: a cross-sectional study.

Abstract

BACKGROUND: Most studies on children with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) have been undertaken in tertiary care and little is known about their management in primary care. AIM: To describe the characteristics of patients aged 5-19 years with CFS-like illness in primary care and to examine how GPs investigate and manage patients. DESIGN OF STUDY: Descriptive retrospective questionnaire study. SETTING: Sixty-two UK GP practices in the MRC General Practice Research Framework (GPRF). METHOD: One hundred and twenty-two practices were approached; 62 identified 116 patients consulting a GP with severe fatigue lasting over 3 months. Practice nurses and GPs completed questionnaires from medical notes and patients completed postal questionnaires. RESULTS: Ninety-four patients were considered by a clinical panel, blind to diagnosis, to meet the Oxford CFS criteria with a fatigue duration of 3 months. Seventy-three per cent were girls, 94% white, mean age was 12.9 years and median illness duration 3.3 years. GPs had principal responsibility for 62%. A diagnosis of CFS/ME was made in 55%, 30% of these within 6 months. Fifty per cent had a moderate illness severity. Paediatric referrals were made in 82% and psychiatric referrals in 46% (median time of 2 and 13 months respectively). Advice given included setting activity goals, pacing, rest and graded exercise. CONCLUSIONS: Patient characteristics are comparable to those reported in tertiary care, although fewer are severe cases. GPs have responsibility for the majority of patients, are diagnosing CFS/ME within a short time and applying a range of referral and advice strategies.