Partnering with patients using social media to develop a hypertension management instrument

•A patient-centered hypertension instrument was developed.•Data collection occurred using a social media platform.•Patients did not focus on hypertension and reported it as mild.•The symptoms of high blood pressure were less severe than other conditions.•The tool can be used by practitioners to assess barriers to hypertension management.

Hypertension is a lifelong condition; thus, long-term adherence to lifestyle modification, self-monitoring, and medication regimens remains a challenge for patients. The aim of this study was to develop a patient-reported hypertension instrument that measured attitudes, lifestyle behaviors, adherence, and barriers to hypertension management using patient-reported outcome data. The study was conducted using the Open Research Exchange software platform created by PatientsLikeMe. A total of 360 participants completed the psychometric phase of the study; incomplete responses were obtained from 147 patients, and 150 patients opted out. Principal component analysis with orthogonal (varimax) rotation was executed on a data set with all completed responses (N = 249) and applied to 43 items. Based on the review of the factor solution, eigenvalues, and item loadings, 16 items were eliminated and model with 29 items was tested. The process was repeated two more times until final model with 14 items was established. In interpreting the rotated factor pattern, an item was said to load on any given component if the factor loading was ≥0.40 for that component and was <0.40 for the other. In addition to the newly generated instrument, demographic and self-reported clinical characteristics of the study participants such as the type of prescribed hypertension medications, frequency of blood pressure monitoring, and comorbid conditions were examined. The Open Research Exchange platform allowed for ongoing input from patients through each stage of the 14-item instrument development.