Qualitative Assessment of the Patient-Reported Outcome Measure for Vascular Malformation (PROVAM) Questionnaire in...

This study analyzed factors influencing pain, bothersome symptoms, and unmet concerns in low-flow vascular malformations (LFVM) using qualitative insights from Patient-Reported Outcome Measure for Vascular Malformation (PROVAM) questionnaires.

Between July 2019 and February 2022, 327 patients with LFVM at a vascular anomalies clinic completed 439 PROVAM questionnaires. The 30-item instrument includes four free-text questions on factors that affect pain, bothersome symptoms, and issues not captured elsewhere. All responses were analyzed by a directed content-analysis approach within three domains: physical (PD), emotional/social well-being (ESD), and functional (FD) regarding LFVMs in the head and neck (H&N), upper extremity (UE), lower extremity (LE), and trunk.

Of 439 questionnaires, 319 (72.7%) reported factors affecting pain. Increased activity (159/319, 49.8%) and physical pressure on the LFVM (110/319, 34.5%) worsened pain. Out of 323 responses (73.6%), the most bothersome symptoms related to the PD (261/323, 80.8%), followed by ESD (52/323, 16.1%) and FD (H&N: 15/323, 4.6%; UE, LE, trunk: 46/323, 14.2%). The most common themes were pain or discomfort (192/323, 59.4%) in the PD, appearance (28/323, 8.7%) in the ESD, effect on eating/drinking (9/323, 2.8%) in the FD (H&N), and effect on walking, standing, sitting, or lying down (21/323, 6.5%) in the FD (UE, LE, trunk).

Qualitative analysis of PROVAM responses revealed diverse factors affecting the quality of life for LFVM patients, including symptom triggers, most bothersome symptoms, and issues not covered in the quantitative survey. These insights highlight the importance of the qualitative survey in understanding this heterogeneous disease.