The development and validation of the Cluster Headache Quality of life scale (CHQ)

Abstract

BackgroundCluster 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.MethodsBased 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.ResultsItem 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.ConclusionsWe 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.

Mapping Assessments Instruments for Headache Disorders against the ICF Biopsychosocial Model of Health and Disability

“…The most used assessment instruments in CH were the HIT-6 and the SF-36, used in seven and four studies respectively. Two CH-specific assessment instruments have been developed, the Cluster Headache Quality of life scale (CHQ) [ 135 ], and the Cluster Headache Scales (CHS) [ 56 ]. The CHQ content covers mental functions connected to impulse control, sleep, cognitive, and emotional functions, as well as pain, and a set of activities connected to watching, reading, self-care, relations, general daily life, work, and leisure time.…”

Disability, Quality of Life, and Socioeconomic Burden of Cluster Headache: A Critical Review of Current Evidence and Future Perspectives

“…In our opinion, the main reason lies in the absence of CH‐specific assessment instruments. A CH‐specific questionnaire – the Cluster Headache Quality of life scale (CHQ) – was not published until 2016 . The scale is composed of 28 items that are grouped into 4 subscales.…”

“…A CH-specific questionnaire -the Cluster Headache Quality of life scale (CHQ) -was not published until 2016. 60 The scale is composed of 28 items that are grouped into 4 subscales. CHQ was found to have good construct validity, internal consistency, convergent validity, and test-retest reliability.…”

Development and Validation of the Cluster Headache Screening Questionnaire

“…Cluster headache (CH) is characterized by severe recurrent unilateral head pain, ipsilateral cranial autonomic symptoms, and an impaired quality of life 123. Although little is known about the population-based epidemiology of CH, a meta-analysis found wide ranges for the lifetime and 1-year prevalence rates, of 56–381 per 100,000 and 3–150 per 100,000, respectively 4.…”