Delays in the diagnosis and misdiagnosis of cluster headache – a systematic literature review

Introduction: Patients with cluster headache (CH), the most common trigeminal autonomic cephalalgia, often face delayed diagnosis, misdiagnosis and mismanagement.

Objectives: To identify, appraise and synthesise clinical studies on the delays in diagnosis and misdiagnosis of CH.

Methods: The systematic review was prepared, conducted and reported in accordance with the Preferred reporting items for systematic review and meta-analysis (PRISMA). It was registered with International Prospective Register of Systematic Reviews (PROSPERO). Medline, EMBASE, PsycINFO, PubMed, CINAHL, BNI, HMIC, AMED, HBE and Cochrane Library databases were systematically searched. Reference lists of relevant articles were hand searched.

Results: Fifteen studies, including 4661 patients, met the inclusion criteria; 13 case series and two surveys. Delays in diagnosis, misdiagnosis and mismanagement have been reported in Europe, Japan and the USA, all with well-developed health services. Patients consulted on average 3 clinicians and waited a mean time from three to nine years (ranges between 0 – 48 years) prior to being correctly diagnosed. Both patient and physician factors account for the delays in diagnosis.

Conclusion: Diagnostic delays and misdiagnosis of CH is a worldwide problem and both patients and clinicians are responsible for the delays in diagnosis.