The development and validation of the Cluster Headache Quality of life scale (CHQ).
BACKGROUND
Cluster headache (CH) is a rare, excruciating and highly disabling primary headache disorder. Using non cluster headache specific measures, previous studies have shown that CH has a significant negative impact on patients' quality of life (QoL), but a CH-specific QoL scale is currently unavailable. Thus, the objective of this study was to develop and validate a CH-specific QoL scale.


METHODS
Based on a literature review, semi-structured patient interviews and expert panel consultation, we produced a 54-item questionnaire, which was pre-tested in a sample of CH patients and subsequently reduced to 47 items. The revised scale was then administered to CH sufferers attending a tertiary headache clinic and those registered with a patient group. A total of 406 completed questionnaires were received. To assess test-retest reliability, a subsample (N = 56) completed the scale on a second occasion, two weeks after the first. Standard statistical methods were used to analyse the data for validity and reliability.


RESULTS
Item reduction and exploratory factor analysis led to 28-items, grouped into four subscales labelled "restriction of activities of daily living", "impact on mood and interpersonal relationships", "pain and anxiety", and "lack of vitality". The final CH-specific QoL scale, the CHQ, demonstrated satisfactory internal consistency (Cronbach's alpha > 0.9) and test-retest reliability (intraclass correlation coefficient > 0.8), with good internal construct validity between subscales (range 0.52-0.75) and convergent validity with other QoL measures.


CONCLUSIONS
We have developed and validated the first patient-reported outcome measure of QoL specifically for CH sufferers, which may be used to monitor QoL in clinical care and research.
Headache Group, UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, UK.
Norazah
N
Abu Bakar
Cognitive Motor Neuroscience Group, Sobell Department of Motor Neuroscience & Movement Disorders, UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, UK.
Mariam
M
Torkamani
Headache Group, UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, UK.
Surat
S
Tanprawate
Headache Group, UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, UK.
Giorgio
G
Lambru
Headache Group, UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, UK.
Manjit
M
Matharu
Cognitive Motor Neuroscience Group, Sobell Department of Motor Neuroscience & Movement Disorders, UCL Institute of Neurology and The National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, UK. m.jahanshahi@ucl.ac.uk.
Marjan
M
Jahanshahi
D000203:Activities of Daily Living / Q000523:psychology*; D000328:Adult; D000368:Aged; D003027:Cluster Headache / Q000150:complications / Q000503:physiopathology / Q000523:psychology*; D005163:Factor Analysis, Statistical; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016730:Program Development; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
Cluster headache; Headache; Quality of life; Trigeminal autonomic cephalalgia