Validation of the disease experience questionnaire for working age adults with chronic conditions

Abstract

Abstract Background Working age adults diagnosed with chronic diseases are growing in prevalence and not all of them manage to stay at work. Chronic conditions need a long-term response from the (occupational) health care system, which, however, is structured mostly around acute episodes. The aim was to develop and validate a questionnaire tapping working age patients' lived experiences with their chronic disease. Methods Based on a qualitative study, the 13-item Disease Experience Questionnaire (DEQ) was developed for persons in working age. DEQ taps 3 types of disease experiences: 1) Disruption: hopelessness and irreparable loss; 2) Meaningful: an opportunity to set new life priorities; 3) Episode: an inconvenient period to be overcome. Items were filled out online by 2,028 persons diagnosed with chronic headache, autism, HIV, neurofibromatosis, CKD or sarcoidosis. Several proxy variables and demographics were measured. Data were analyzed with PCA, reliability analysis, correlations with criterion variables and ANOVA to compare levels of disease experiences across groups differing in age, education and work status. Results Disruption was valid for all disease groups. Lower educated and non-working persons had significantly higher Disruption levels. Meaningful was valid for the total sample, the autism, HIV and sarcoidosis groups. Cronbach's alphas were .755 and .661 respectively. Episode was only valid for the HIV group (Cronbach's alpha .632). Levels of Meaningful and Episode did not differ in relation to age, education or work status. Correlations with criterion variables were in the expected directions. Conclusions DEQ is a valid tool for identifying disease experiences in working age adults with diverse chronic diseases. The disease experience of persons with HIV, for which also the Episode subscale can be helpful, differs from that of persons with other chronic diseases. The Disruption and Meaningful subscales can help to tailor (occupational) health care to patient needs. Key messages The Disease Experience Questionnaire (DEQ) is a valid tool to identify disease experiences in the working age population with chronic diseases. The DEQ Disruption and Meaningful subscales can help to tailor (occupational) health care to patient needs.