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

Norazah Abu Bakar,Surat Tanprawate,Marjan Jahanshahi,Mariam Torkamani,Manjit Matharu,Giorgio Lambru

doi:10.1186/s10194-016-0674-1

Norazah Abu Bakar, Surat Tanprawate + Show 4 more

Open Access

https://doi.org/10.1186/s10194-016-0674-1

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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.

Highlights

Cluster headache (CH) is a rare, excruciating and highly disabling primary headache disorder
No significant differences were found in the CH-specific Health related quality of life (HRQoL) scores between males and females
We hope that it can be used in the clinical setting to monitor quality of life (QoL) as part of patient care, as well as in clinical trials as a patient-reported outcome measure

Summary

Introduction

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. The authors postulated that since the study used a migraine-specific measure, it might not have been able to truly capture the essential aspects of CH [7]. In light of this and the differences between the two headache entities, we aim to develop a CH-specific QoL tool, which may better reflect the true nature of the daily life impact of this highly disabling disorder. We report the development and validation of a disease-specific QoL instrument for CH

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