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Longitudinal patterns of pain in patients with diffuse and limited systemic sclerosis: integrating medical, psychological, and social characteristics

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Abstract

Purpose

Pain is a common but understudied quality of life concern in systemic sclerosis (SSc). This investigation sought to describe patient-reported pain during the early phase of the disease and to examine potential predictors of this over time.

Methods

A prospective cohort (N = 316) of patients with early-disease SSc from the Genetics versus ENvironment In Scleroderma Outcome Study (GENISOS) were followed for 3 years. Multilevel modeling was used to describe longitudinal changes in pain and the extent to which pain variance was explained by disease type, emotional health, perceived physical health, health worry, and social support.

Results

Patient-reported pain remained relatively stable, with slight improvement over time. More severe disease type was associated with worse initial pain, but the association was reduced to nonsignificance after accounting for the psychosocial variables. Better emotional health and perceived physical health were associated with lower initial pain. There were marginal interactive effects for perceived physical health and social support such that initial perceptions of poorer physical health, and higher social support, were predictive of greater improvements in pain over time.

Conclusions

These data suggest that emotional health, perceived physical health, and social support are more relevant to longitudinal SSc pain than disease severity and that perceived physical health and social support may impact pain trajectories. Researchers and rheumatology health professionals should consider these factors in comprehensive pain models and pain management protocols.

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Fig. 1
Fig. 2

Notes

  1. Clinical manifestations (digital ulcers, calcinosis, arthritis) were considered for inclusion in the medical model given previous research demonstrating that these correlate with pain, even after accounting for depression (Schieir et al., 2010). These variables did not have bivariate correlations with pain in the current data and thus were excluded in order to keep the model as parsimonious as possible.

  2. Note that the SF-36 metric is such that lower scores indicate greater pain severity and interference, whereas higher scores indicate lesser pain severity and interference.

  3. The intercept is interpreted as mean pain for those with diffuse disease (coded as 0); the slope is difference in mean pain for those diffuse versus limited cutaneous disease (coded as 1). The significant and positive slope value indicates that the mean pain score for limited patients was 8.82 points higher than the mean for diffuse patients.

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Acknowledgments

Funding was provided by the National Institute of Health (NIH/NIAMS) Center of Research Translation (CORT) in Scleroderma P50AR054144 (PI: Mayes); NIH-KL2RR024149 and K23AR061436 (PI: Assassi).

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Correspondence to Erin L. Merz.

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Merz, E.L., Malcarne, V.L., Roesch, S.C. et al. Longitudinal patterns of pain in patients with diffuse and limited systemic sclerosis: integrating medical, psychological, and social characteristics. Qual Life Res 26, 85–94 (2017). https://doi.org/10.1007/s11136-016-1370-y

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  • DOI: https://doi.org/10.1007/s11136-016-1370-y

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