OP0277-HPR PATTERNS OF PATIENT-REPORTED SYMPTOMS IN SYSTEMIC SCLEROSIS: A SCLERODERMA PATIENT-CENTERED INTERVENTION NETWORK (SPIN) COHORT STUDY
Authors: Wojeck R. , Knisely M. , Bailey D. , Somers T. , Kwakkenbos L. , Carrier M. E. , Nielson W. , Bartlett S. J. , Malcarne V. , Hudson M. , Levis B. , Benedetti A. , Mouthon L. , Thombs B. , Silva S. 
Published: June 2023

Background

Patient-reported symptoms including pain, fatigue, sleep disturbance, anxiety, and depression are among the most common and burdensome symptoms in systemic sclerosis.[1–4] Most research on these symptoms in systemic sclerosis has examined only one symptom at a time, without evaluating the degree to which symptoms co-occur or how sociodemographic and disease-related characteristics are associated with co-occurring symptoms.

Objectives

We aimed to identify homogenous subgroups, or classes, of individuals with systemic sclerosis who reported similar patterns of anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics.

Methods

We conducted a multi-center cross-sectional study using data collected at time of enrollment in the ongoing Scleroderma Patient-centered Intervention Network Cohort. Eligible participants completed the Patient-Reported Outcomes Measurement Information System (PROMIS)-29 profile. Latent profile analysis was used to identify classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes.

Results

We identified five distinct classes among 2,212 individuals with systemic sclerosis. Four of the classes were based on increasing levels of symptom severity across all symptoms, from “Low” (n=565, 26%) to “Normal” (n=651, 29%) to “High” (n=569, 26%) to “Very High” (n=193, 9%). Participants in the fifth class, labeled “High Fatigue/Sleep/Pain and Low Anxiety/Depression” (n=234, 11%), had similar levels of fatigue, sleep disturbance, and pain as in the “High” class but low symptoms of anxiety and depression. There were significant 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 groups. Disease severity and sociodemographic characteristics were similar between the “High Fatigue/Sleep/Pain and Low Anxiety/Depression” class and the “High” severity class.

Conclusion

This is the first study to fully capture the co-occurrence of the most common symptoms in systemic sclerosis and to identify a group of people who appear to have avoided negative mental health outcomes that, for many patients, track closely with their disease severity and symptom levels. Studies are needed to better understand the characteristics of people with systemic sclerosis who are highly resilient and facilitate the implementation of multi-symptom interventions to better manage patient-reported symptoms and improve overall quality of life.

References

[1]Bassel M, Hudson M, Taillefer SS, Schieir O, Baron M, Thombs BD. Frequency and impact of symptoms experienced by patients with systemic sclerosis: Results from a Canadian national survey.Rheumatology. 2011;50(4):762-767. doi:10.1093/rheumatology/keq310

[2]Richards HL, Herrick AL, Griffin K, Gwilliam PDH, Loukes J, Fortune DG. Systemic sclerosis: Patients’ perceptions of their condition.Arthritis Care Res. 2003;49(5):689-696. doi:10.1002/art.11385

[3]Willems LM, Kwakkenbos L, Leite CC, et al. Frequency and impact of disease symptoms experienced by patients with systemic sclerosis from five European countries.Clin Exp Rheumatol. 2014;32(6 Suppl 86):S-88-93.

[4]Thombs BD, Van Lankveld W, Bassel M, et al. Psychological health and well-being in systemic sclerosis: State of the science and consensus research agenda.Arthritis Care Res. 2010;62(8):1181-1189. doi:10.1002/acr.20187

Figure 1.

Mean Symptom Domain Scores for Each Group

Acknowledgement

Canadian Institutes of Health Research, Arthritis Society Canada, Lady Davis Institute for Medical Research of the Jewish General Hospital, Jewish General Hospital Foundation, McGill University, Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, Scleroderma Queensland, National Institute of Nursing Research.

Disclosure of Interests

None Declared.