Severe symptoms more likely noted by younger, nonwhite patients

Patient-reported data analyzed to reveal patterns in symptoms, demographics

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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People with scleroderma who report more severe disease symptoms tend to be younger and nonwhite, a new study reports.

The study, “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,” was published in eClinicalMedicine.

Scleroderma (also called systemic sclerosis) can cause a range of symptoms that can reduce a person’s quality of life. Previous studies have shown that patients generally report the most life quality issues with five specific symptoms: anxiety, depression, fatigue, sleep problems, and pain.

However, prior studies have generally looked at each of these symptoms individually, and haven’t examined how they vary based on sociological and demographic factors such as age, sex, and race. Here, researchers conducted a large statistical analysis to better understand how these symptoms associate with each other and with other factors among people with scleroderma.

“A better understanding of patterns of co-occurring patient-reported symptoms in systemic sclerosis and their relationship with sociodemographic and disease-related characteristics would provide critical information to support investigation of symptom [causes] and coping and the development of tailored intervention approaches in a highly [varied] disease,” the team wrote.

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Analysis included data from 2,212 adults with scleroderma

The analysis included data on a total of 2,212 adults with scleroderma, most of whom lived in the U.S., Canada, or France. Most of the patients identified as female (88%), white (83%), and married or living with a partner (71%). The mean age was just shy of 55 years, and the mean time since diagnosis was 9.4 years.

Statistical analyses based on the patient-reported severity of anxiety, depression, fatigue, sleep problems, and pain revealed five groups or clusters of patients.

About one-quarter (26%) of the patients were in the “low” cluster, with lower (less severe) scores across these five symptoms compared to average values for the overall U.S. population. Another 29% were in the “normal” cluster, with scores similar to the U.S. population.

The “high” cluster, where patients reported more severe issues compared to the general population, included 26% of the patients, while 9% of the patients were in the “very high” cluster, generally reporting the most severity across these five symptoms.

Our findings underscore the need for research to better understand the characteristics of people with systemic sclerosis who are highly resilient.

The remaining 11% of patients were grouped into a fifth cluster. These patients had higher-than-average scores related to pain, fatigue, and sleep problems, but they also had lower-than-average scores related to anxiety and depression.

Further analyses showed that sociodemographic factors tended to vary across these clusters. Patients in clusters with more severe disease were generally younger and had less formal education; these patients also were less likely to be married or partnered. The higher severity clusters also included a higher proportion of Black or other nonwhite patients.

Patients in the higher severity clusters also tended to report more issues with other disease symptoms, such as more moderate to severe joint contractures (when the muscles around joints become shortened and hardened) and more digestive problems.

“We identified a trend in which worsening symptom severity across these classes corresponded closely with worse disease,” the researchers wrote.

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Building resilience may help patients with severe disease

They noted that the fifth cluster (with high pain, fatigue and sleep problems but low anxiety and depression) generally had similar demographics to the “high” disease severity cluster. The researchers said that the lower severity of mental health issues in this group “may be explained by resilience and how different people cope with the very high level of burden they face from their disease,” though they stressed that further research will be necessary to investigate this idea.

“Our findings underscore the need for research to better understand the characteristics of people with systemic sclerosis who are highly resilient, including validation of measurement tools and studies that compare characteristics of less and more resilient people,” the scientists wrote, adding that this type of research could help to create intervention strategies to provide mental health support for people with systemic sclerosis.

The scientists noted that the study’s large sample size allowed robust statistical analyses, but the analyses on race and ethnicity are limited by the small number of non-white patients included. They also noted that data on economic factors, which are closely associated with demographics, were not available, and that the analysis looked at symptom severity at a single point in time, rather than investigating how symptoms evolve over the course of the disease.