What is it like for patients living with chronic headache? A systematic review and synthesis of qualitative studies

Talk Code: 
Vivien Nichols
David Ellard, Frances Griffiths, Atiya Kamal, Martin Underwood, Stephanie Taylor
Author institutions: 
University of Warwick, Queen Mary University of London


Chronic headache (CH), defined as headache which is present on ≥15 days per month for more than 3 months, has a prevalence of 3-5% of the population. The main types are chronic migraine and chronic tension type headache. A high proportion of people with CH will also have medication overuse which itself can increase headaches. This systematic review and synthesis of qualitative studies gives the patients’ perspectives of CH.

The aim of this review was to inform the Chronic Headache Education and Self-management Study (CHESS) feasibility study which piloted a classification tool and a psychoeducational group intervention for people with CH.


We used electronic and hand searches of key databases and journals and appraised the included studies for risk of bias using a modified CASP tool. We initially used thematic analysis followed by a synthesis of the data using a meta-ethnographic approach.


We screened 6,421 titles and abstracts identifying 86 studies of interest. Four studies met our criteria. All differed in their focus on CH exploring; patient-centred outcomes, CH as a socially invisible disease, psychological processes mediating quality of life impairments and the process of medication overuse.

Themes were explored across the studies, further analysis of the results and subsequent synthesis produced three overarching themes; 1) ‘headache as a driver of behaviour’ - forcing patents to stop activities or take increasing medication in order to function, 2) ‘the spectre of headache’ - the worries, fear and guilt patients carry and 3) ‘strained relationships’ - the effect their headaches and behaviour have on those around them as well as other peoples’ attitudes towards them and their headaches. Although chronic tension type headaches were represented in the data they may have been overshadowed by chronic migraine features.


Qualitative studies specifically about CH are rare. Future research is needed to explore patients’ perspectives of; addressing medication overuse, chronic tension type headache compared to chronic migraine and whether non-pharmacological behavioural treatment approaches may be of benefit.

Submitted by: 
Vivien Nichols
Funding acknowledgement: 
This work was supported by the National Institute for Health Research Programme Grants for Applied Research [Chronic Headache Education and Self-management Study (CHESS) ISRCTN Number: 79708100].