Pain in sickle cell disease: a prospective multicentre community-based cohort study in underserved Indian communities

Pain is the most prevalent and debilitating symptom of sickle cell disease (SCD). However, there is a paucity of community-based, longitudinal data from low- and middle-income countries. This study is to systematically document phenotypic details of SCD-related pain in a cohort through a prospective, year-long study in underserved regions of five Indian states.

Individuals with SCD were monitored prospectively for 24 fortnights. Pain-related data, including episode frequency, intensity, anatomical distribution, quality descriptors, and patterns, were collected. Statistical analyses comprised descriptive statistics, tests of significance and the Jonckheere - Terpstra trend test, etc.

Across 6,048 visits to 252 patients, 2,042 pain episodes were reported, with 86.1% of patients experiencing at least one episode. Pain most frequently affected the lower legs and calves, with significantly higher rates among females (p < 0.001). Continuous and rhythmic pain patterns were associated with severe pain (p < 0.001). Sensory descriptors were more prevalent among high-intensity cases, suggesting neuropathic components.

This is the first Indian community-based longitudinal study revealing a significant prevalence of unreported pain and phenotypic variability. It contributes to the development of region-specific pain management frameworks by considering chronicity, gender, and sociocultural expressions of pain.