Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Background Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods This multi-centre cross-sectional study used baseline data from Scleroderma Patient-centered Intervention Network Cohort participants enrolled from 2014 to 2020. Eligible participants completed the PROMIS-29 v2.0 measure. Latent profile analysis was used to identify homogeneous classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes. Findings Among 2212 participants, we identified five classes, including four classes with Low (565 participants, 26%), Normal (651 participants, 29%), High (569 participants, 26%), or Very High (193 participants, 9%) symptom levels across all symptoms. Participants in a fifth class, High Fatigue/Sleep/Pain and Low Anxiety/ Depression (234 participants, 11%) had similar levels of fatigue, sleep disturbance, and pain as in the High class but low anxiety and depression symptoms. There were significant and substantive trends in sociodemographic characteristics (age, education, race or ethnicity, marital or partner status) and increasing disease severity (diffuse disease, tendon friction rubs, joint contractures, gastrointestinal symptoms) across severity-based classes. Disease severity and sociodemographic characteristics of High Fatigue/Sleep/Pain and Low Anxiety/Depression class participants were similar to the High severity class. Interpretation Most people with systemic sclerosis can be classified by levels of patient-reported symptoms, which are consistent across symptoms and highly associated with sociodemographic and disease-related variables, except for one group which reports low mental health symptoms despite high levels of other symptoms and substantial disease burden. Studies are needed to better understand resilience in systemic sclerosis and to identify and facilitate implementation of cognitive and behavioural strategies to improve coping and overall quality of life.

Automated summary

This study aimed to identify classes of individuals with similar symptom clusters in systemic sclerosis and evaluate associated characteristics. The majority of systemic sclerosis patients showed consistency between symptom levels and sociodemographic and disease-related variables. However, there was a group with low mental health symptoms despite high levels of other symptoms. This study highlights the importance of developing coping strategies and improving quality of life for systemic sclerosis patients.