The Sarcoidosis Health Questionnaire: A New Measure of Health-related Quality of Life

The Sarcoidosis Health Questionnaire (SHQ) is a health-related quality-of-life (HRQL) instrument we designed in a two-part study to allow patients to describe their satisfaction with life as it is affected by sarcoidosis. In the Development Study, we created the SHQ from a 151-item pool generated from interviews with 107 patients, a search of the relevant literature, and discussion with sarcoidosis experts. Using clinical impact methodology and the questionnaire responses of a separate group of 149 patients, we reduced the total number of items to 29. The final SHQ has three domains: Daily Functioning, Physical Functioning, and Emotional Functioning. In the Validation Study, performed with a different group of 111 patients, we found that the SHQ had good internal consistency reliability, as well as evidence of content, criterion, and construct validity based on its comparison with other measures of HRQL (Medical Outcomes Study 36-Item short form and the St. George's Respiratory Questionnaire) and of mental health (the Center for Epidemiologic Study-Depression Scale), as well as with clinical variables including spirometry. The SHQ alone was sensitive to differences in HRQL based on the number of involved organ systems. In conclusion, we have developed a self-completed HRQL questionnaire for U.S. patients with sarcoidosis.