Pain chronification and the important role of non-disease-specific symptoms in patients with systemic sclerosis

Evers, Caroline; Jordan, Suzana; Maurer, Britta; Becker, Mike; Mihai, Carina; Dobrotă, Rucsandra; Hoederath, Petra; Distler, Oliver

doi:10.1186/s13075-021-02421-1

Cited by 8 publications

(3 citation statements)

References 59 publications

(83 reference statements)

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“…1 ). Pain is a known influencing factor of physical limitation and depressive symptoms in patients with SSc ( 34 – 36 ) and is also an important indicator of sexual dysfunction in women with SSc ( 37 ) that can lead to depression. Furthermore, pulmonary hypertension with associated dyspnoea and muscle weakness influenced the high risk of depressive symptoms.…”

Section: Discussionmentioning

confidence: 99%

Determinants of Depressive Symptoms, Quality of Life, Subjective Health Status and Physical Limitation in Patients with Systemic Sclerosis

Heyne,

Haufe,

Beissert

et al. 2023

Acta Derm Venereol

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Systemic sclerosis is a progressive connective tissue disease for which there is limited knowledge about physical limitations, quality of life and depression. The aim of this study was to assess these parameters during the disease process of systemic sclerosis, in a cross- sectional study of 79 patients and a longitudinal study of 33 patients over 10 years. Medical data were collected by physicians’ questionnaires and sociodemographic data, pain, physical limitation, quality of life, subjective health status, risk of depressive symptoms by patients’ questionnaires. Data analysis was descriptive and exploratory. Cross-tabulations, χ2 test and Student’s t-test were used for calculations, Pearson’s correlation to measure dependencies, and logistic regression analyses for categorized parameters. The cross-sectional analysis of 79 patients with systemic sclerosis (81% female, mean ± standard deviation age 61.5 ± 12.6 years) demonstrated a higher rate of patients with risk of depressive symptoms (42.3%) higher physical limitations, lower quality of life, and subjective health status than reference values for the general German population. Moderate to strong correlations between disease-related physical limitation, quality of life, subjective health status, risk of depressive symptoms and pain were detected (correlation according to Pearson –0.459 to –0.638, p < 0.001). Longitudinal analysis revealed a significant increase in disease activity, pain, physical limitation and risk of depressive symptoms (p < 0.001) during the disease process. This study demonstrates that nearly half of patients with systemic sclerosis probably experience depressive symptoms. The rate of patients with risk of depressive symptoms, pain and physical limitations increased during the systemic sclerosis disease process. Health-related quality of life and state of health declined, indicating the need for better interdisciplinary care for patients with systemic sclerosis.

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Section: Discussionmentioning

confidence: 99%

Determinants of Depressive Symptoms, Quality of Life, Subjective Health Status and Physical Limitation in Patients with Systemic Sclerosis

Heyne,

Haufe,

Beissert

et al. 2023

Acta Derm Venereol

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“…SSc is a complex disorder and multiple factors may contribute to pain, including skin and joint inflammation, Raynaud’s phenomenon, digital ulcers, calcinosis, joint contractures, gastrointestinal manifestations, and tendon friction rubs, as well as overlapping conditions such as rheumatoid arthritis and Sjögren’s syndrome [ 18 , 22 , 23 ]. To understand pain in SSc, it is important to assess both sources of pain and the characteristics of pain from each source.…”

Section: Introductionmentioning

confidence: 99%

Protocol for the development of a tool to map systemic sclerosis pain sources, patterns, and management experiences: a Scleroderma Patient-centered Intervention Network patient-researcher partnership

Dal Santo,

Golberg,

Nassar

et al. 2024

BMC Rheumatol

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Introduction Systemic sclerosis (SSc) is a rare, complex autoimmune rheumatic disease with multiple factors that contribute to pain. People with SSc emphasize the effect pain has on their quality of life, but no studies have systematically examined the frequency and relative importance of different SSc pain sources, patterns of pain from different sources, and pain management experiences. Our objectives are to (1) develop a tool, jointly with researchers, health care providers, and patients, to map sources of pain in SSc, determine patterns of pain from different sources, and understand pain management experiences; and (2) administer the final tool version to participants in the large multinational Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Methods First, we will use validated pain assessment tools as templates to develop an initial version of our pain assessment tool, and we will obtain input from patient advisors to adapt it for SSc. The tool will include questions on pain sources, pain patterns, pain intensity, pain management techniques, and barriers to pain management in SSc. Second, we will conduct nominal group technique sessions with people living with SSc and health care providers who care for people with SSc to further refine the tool. Third, we will conduct individual usability testing sessions with SPIN Cohort participants. Once the tool has been finalized, we will administer it to individuals in the multinational SPIN Cohort, which currently includes over 1,300 active participants from 54 sites in 7 countries. We will perform unsupervised clustering using the KAy-Means for MIxed LArge data (KAMILA) method to identify participant subgroups with similar profiles of pain sources (present or absent) and to evaluate predictors of subgroup membership. We will use latent profile analysis to identify subgroups of participants with similar profiles based on pain intensity scores for each pain source and evaluate predictors. Discussion Once completed, our pain assessment tool will allow our team and other researchers to map sources of pain in SSc and to understand pain management experiences of people living with SSc. This knowledge will provide avenues for studies on the pathophysiology of pain in SSc and studies of interventions to improve pain management.

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“…SSc is a complex disorder and multiple factors may contribute to pain, including skin and joint in ammation, Raynaud's phenomenon, digital ulcers, calcinosis, joint contractures, gastrointestinal manifestations, and tendon friction rubs, as well as overlapping conditions such as rheumatoid arthritis and Sjögren's syndrome (18,22,23).To understand pain in SSc, it is important to assess both sources of pain and the characteristics of pain from each source. However, most existing pain assessments (24-26) are global pain scales that generate overall pain intensity or interference scores or domain scores, such as sensory and affective aspects of pain (25).…”

mentioning

confidence: 99%

Protocol for the Development of a Tool to Map Systemic Sclerosis Pain Sources, Patterns, and Management Experiences: A Scleroderma Patient-Centered Intervention Network Patient-Researcher Partnership

Santo,

Golberg,

Nassar

et al. 2024

Preprint

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Introduction: Systemic sclerosis (SSc) is a rare, complex autoimmune rheumatic disease with multiple factors that contribute to pain. People with SSc emphasize the effect pain has on their quality of life, but no studies have systematically examined the frequency and relative importance of different SSc pain sources, patterns of pain from different sources, and pain management experiences. Our objectives are to (1) develop a tool, jointly with researchers, health care providers, and patients, to map sources of pain in SSc, determine patterns of pain from different sources, and understand pain management experiences; and (2) administer the final tool version to participants in the large multinational Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Methods: First, we will use validated pain assessment tools as templates to develop an initial version of our pain assessment tool, and we will obtain input from patient advisors to adapt it for SSc. The tool will include questions on pain sources, pain patterns, pain intensity, pain management techniques, and barriers to pain management in SSc. Second, we will conduct nominal group technique sessions with people living with SSc and health care providers who care for people with SSc to further refine the tool. Third, we will conduct individual usability testing sessions with SPIN Cohort participants. Once the tool has been finalized, we will administer it to individuals in the multinational SPIN Cohort, which currently includes over 1,300 active participants from 54 sites in 7 countries. We will perform unsupervised clustering using the KAy-Means for MIxed LArge data (KAMILA) method to identify participant subgroups with similar profiles of pain sources (present or absent) and to evaluate predictors of subgroup membership. We will use latent profile analysis to identify subgroups of participants with similar profiles based on pain intensity scores for each pain source and evaluate predictors. Discussion: Once completed, our pain assessment tool will allow our team and other researchers to map sources of pain in SSc and to understand pain management experiences of people living with SSc. This knowledge will provide avenues for studies on the pathophysiology of pain in SSc and studies of interventions to improve pain management.

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Pain chronification and the important role of non-disease-specific symptoms in patients with systemic sclerosis

Cited by 8 publications

References 59 publications

Determinants of Depressive Symptoms, Quality of Life, Subjective Health Status and Physical Limitation in Patients with Systemic Sclerosis

Determinants of Depressive Symptoms, Quality of Life, Subjective Health Status and Physical Limitation in Patients with Systemic Sclerosis

Protocol for the development of a tool to map systemic sclerosis pain sources, patterns, and management experiences: a Scleroderma Patient-centered Intervention Network patient-researcher partnership

Protocol for the Development of a Tool to Map Systemic Sclerosis Pain Sources, Patterns, and Management Experiences: A Scleroderma Patient-Centered Intervention Network Patient-Researcher Partnership

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