Illness perception in people with primary and secondary chronic headache in the general population

Chronic headache (headache ≥15 days/month) is a leading cause of disability. Illness perception, beliefs and cognitive models are likely central for patient understanding of their chronic pain condition and are associated with treatment outcome. However, these factors are insufficiently described in chronic headache.

To describe illness perception, and to explore the effect of background variables and headache characteristics on illness perceptions in primary and secondary chronic headaches in the general population.

30,000 persons aged 3044 from the general population were screened for chronic headache by a mailed questionnaire. Those with self-reported chronic headache were interviewed by headache specialists. The questionnaire response rate was 71%, and the interview participation rate was 74%. The International Classification of Headache Disorders III was applied. Illness perception was assessed by the Revised Illness Perception Questionnaire (IPQ-R). The statistical approach was exploratory.

405 of the 516 eligible participants (78%) completed the IPQ-R. Confirmatory factor analysis showed good internal validity in chronic headache. People believed their chronic headache to be long-lasting, with negative life consequences including emotional distress. Severe headache-related disability was associated with more perception of chronicity, more perceived consequences, emotional load and illness identity and less illness coherence. People with secondary chronic headache scored significantly higher on chronicity and life consequences, and had less personal control than those with primary chronic headache.

Chronic primary and secondary headache is associated with a high symptom burden and chronicity with large perceived negative consequences for daily living, suggesting multidisciplinary management may be necessary.