The association of resilience and positive mental health in systemic sclerosis: A Scleroderma Patient-centered Intervention Network (SPIN) cohort cross-sectional study.

Objective: A previous study using Scleroderma Patient-centered Intervention Network (SPIN) Cohort data identified five classes of people with systemic sclerosis (also known as scleroderma) based on patient-reported somatic (fatigue, pain, sleep) and mental health (anxiety, depression) symptoms and compared indicators of disease severity between classes. Across four classes ("low", "normal", "high", "very high"), there were progressively worse somatic and mental health outcomes and greater disease severity. The fifth ("high/low") class, however, was characterized by high disease severity, fatigue, pain, and sleep but low mental health symptoms.

The Activity Management Inventory for Pain (AMI-P): Initial Development and Validation of a Questionnaire Based on Operant Learning and Energy Conservation Models of Activity Management.

Objectives: Activity management is an important treatment component in chronic pain programs. However, there are shortcomings in measures of this construct, leading to inconsistencies in research findings. Here, we describe the development of the Activity Management Inventory for Pain (AMI-P).

Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10-Item Connor-Davidson Resilience Scale in Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study.

Objective: Some individuals with systemic sclerosis (SSc) report positive mental health, despite severe disease manifestations, which may be associated with resilience, but no resilience measure has been validated in SSc. This study was undertaken to assess the validity, reliability, and differential item functioning (DIF) between English- and French-language versions of the 10-item Connor-Davidson Resilience Scale (CD-RISC-10) in SSc.

Methods: Eligible participants were enrolled in the Scleroderma Patient-centered Intervention Network Cohort and completed the CD-RISC-10 between August 2022 and January 2023.

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND).

Purpose: The Scleroderma Patient-centered Intervention Network (SPIN) online hand exercise program (SPIN-HAND), is an online self-help program of hand exercises designed to improve hand function for people with scleroderma. The objective of this feasibility trial was to evaluate aspects of feasibility for conducting a full-scale randomized controlled trial of the SPIN-HAND program.

Materials And Methods: The feasibility trial was embedded in the SPIN cohort and utilized the cohort multiple randomized controlled trial (cmRCT) design.

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program.

Background: The Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF Program.

Methods: This feasibility trial was embedded in the SPIN Cohort and utilized the cohort multiple RCT design.

The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial.

Background: Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low intervention offer uptake, we will conduct a new feasibility trial with progression to full-scale trial, using a two-arm parallel, partially nested RCT design.

Pain and Self-Efficacy Among Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study.

Background: Pain is one of the most common symptoms affecting patients with systemic sclerosis; however, little is known about the relationship between self-efficacy and pain and changes in pain over time.

Objectives: The purpose of this study was to describe the relationships between self-efficacy and pain in patients with systemic sclerosis, as well as determine whether changes in self-efficacy mediate changes in pain.

Methods: A prospective longitudinal study was conducted using data from the Scleroderma Patient-Centered Intervention Network Cohort.

The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial.

Background: Systemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical and psychological well-being. Because there is no known cure, SSc treatment focuses on reducing symptoms and disability and improving health-related quality of life (HRQoL). Self-management programs are known to increase self-efficacy for disease management in many chronic diseases.

Identifying barriers and facilitators to physical activity for people with scleroderma: a nominal group technique study.

Purpose: People with systemic sclerosis (scleroderma) face difficulties being physically active. This study identified physical activity barriers and facilitators experienced by people with scleroderma.

Materials And Methods: We conducted nominal group technique sessions with scleroderma patients who shared physical activity barriers, barrier-specific facilitators, and general facilitators.

Pain-Related Activity Management Patterns as Predictors of Treatment Outcomes in Patients with Fibromyalgia Syndrome.

Objectives: This study sought to determine if pre- to post-treatment changes in pain-related activity patterns (i.e., overdoing, avoidance, and pacing) were associated with pre- to post-treatment changes in function (i.

Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study.

Objectives: The Scleroderma Patient-centered Intervention Network (SPIN) Cohort uses the cohort multiple randomised controlled trial design to embed trials of online self-care interventions for people living with systemic sclerosis (SSc; scleroderma). To offer interventions to patients interested in using them, participants complete signalling items that query about the likelihood that patients would agree to participate in nine different hypothetical online programmes addressing common SSc-related problems. It is not known what factors influence patient-reported interest in participating in a particular online intervention and if intervention-specific signalling questions provide unique information or replicate broader characteristics, such as overall willingness to participate or self-efficacy.

Pain and affective distress in arthritis: relationship to immunity and inflammation.

Most arthritides are associated with pain and psychological distress (clinically significant depression and anxiety). Pain and depression are mutually exacerbating; both may continue even when joint involvement appears well controlled. Area covered: There is strong evidence that arthritis-related stress impacts the central nervous system and, together with peripheral inflammatory changes, can cause central sensitization that can lead to chronic pain and worsening of affective distress.

Operant Learning Versus Energy Conservation Activity Pacing Treatments in a Sample of Patients With Fibromyalgia Syndrome: A Pilot Randomized Controlled Trial.

This study's aim was to assess the efficacy of 2 forms of activity pacing in patients with fibromyalgia syndrome (FMS). Treatment-related changes in activity management patterns were also examined. Patients with FMS (n = 178) were randomly assigned to an operant learning (OL; delayed [n = 36] or immediate [n = 54] groups) or an energy conservation (EC; delayed [n = 35] or immediate [n = 53] groups) treatment condition.

Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning.

Changes in activity patterns frequently accompany the experience of chronic pain. Two activity patterns, avoidance and overdoing, are hypothesized to contribute to the development of ongoing pain and pain-related disability, while activity pacing is frequently introduced to enhance pain management and functioning. Two studies were conducted to assess whether reliable subgroups with differing activity patterns could be identified in different pain populations and to evaluate changes in these subgroups after a group format, pain management program.

The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts.

Objectives: The Scleroderma Patient-centered Intervention Network (SPIN) Cohort is a web-based cohort designed to collect patient-reported outcomes at regular intervals as a framework for conducting trials of psychosocial, educational, self-management and rehabilitation interventions for patients with SSc. The aim of this study was to present baseline demographic, medical and patient-reported outcome data of the SPIN Cohort and to compare it with other large SSc cohorts.

Methods: Descriptive statistics were used to summarize SPIN Cohort characteristics; these were compared with published data of the European Scleroderma Trials and Research (EUSTAR) and Canadian Scleroderma Research Group (CSRG) cohorts.

Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program.

The purpose of this study was to explore challenges faced by patients with systemic sclerosis, also called scleroderma, in coping with their disease and the strategies they used to face those challenges. Five focus groups were held with scleroderma patients (4 groups,  = 34) and health care professionals who have experience treating scleroderma (1 group,  = 8). Participants' discussions were recorded, transcribed and analyzed using thematic analysis.

Lower Functional Connectivity of the Periaqueductal Gray Is Related to Negative Affect and Clinical Manifestations of Fibromyalgia.

Fibromyalgia (FM) syndrome is characterized by chronic widespread pain, muscle tenderness and emotional distress. Previous studies found reduced endogenous pain modulation in FM. This deficiency of pain modulation may be related to the attributes of chronic pain and other clinical symptoms experienced in patients with FM.

Pain-related Activity Management Patterns and Function in Patients With Fibromyalgia Syndrome.

Objectives: To clarify the importance of avoidance, pacing, and overdoing pain-related activity management patterns as predictors of adjustment in patients with fibromyalgia syndrome.

Methods: A total of 119 tertiary care patients with fibromyalgia syndrome who agreed to be part of an activity management pain program completed a survey, which requested information about demographics, pain intensity and pain interference, psychological and physical function, and pain-related activity management patterns. Hierarchical regression analyses were used to identify the unique contributions of the 3 different pain-related activity management patterns (avoidance, pacing, and overdoing) to the prediction of pain interference, psychological function, and physical function.

Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort Study.

Objective: The Patient-Reported Outcomes Measurement Information System (PROMIS)-29 assesses seven health-related quality of life domains plus pain intensity. The objective was to examine PROMIS-29v2 validity and explore clinical associations in patients with SSc.

Methods: English-speaking SSc patients in the Scleroderma Patient-centered Intervention Network Cohort from 26 sites in Canada, the USA and the UK completed the PROMIS-29v2 between July 2014 and November 2015.

The reciprocal associations between catastrophizing and pain outcomes in patients being treated for neuropathic pain: a cross-lagged panel analysis study.

Catastrophizing is recognized as a key psychosocial factor associated with pain-related negative outcomes in individuals with chronic pain. Longitudinal studies are needed to better understand the temporal relationship between these constructs. The aim of this study was to determine if changes in catastrophizing early in treatment predicted subsequent changes in pain intensity and interference later in treatment, or alternately, if early changes in pain intensity and interference predicted subsequent changes in catastrophizing.

The Impact of Pain and Itch on Functioning and Health-Related Quality of Life in Systemic Sclerosis: An Exploratory Study.

Context: Pain and itch are common symptoms reported by patients with systemic sclerosis (SSc; scleroderma), which can markedly diminish function and health-related quality of life (HRQL).

Objectives: The aim of this exploratory study was to examine the impact that pain, itch, and the interaction of both have on function (depressive symptoms, overall disability, fatigue, sleep disturbance) and HRQL in patients with SSc.

Methods: A total of 964 patients from the Canadian Scleroderma Reserch Group Registry completed questionnaires measuring itch and pain severity, function, and HRQL.

Validation of the Self-Efficacy for Managing Chronic Disease Scale: A Scleroderma Patient-Centered Intervention Network Cohort Study.

Objective: Self-management programs for patients with chronic illnesses, including rheumatic diseases, seek to enhance self-efficacy for performing health management behaviors. No measure of self-efficacy has been validated for patients with systemic sclerosis (SSc; scleroderma). The objective of this study was to assess the validity and internal consistency reliability of the Self-Efficacy for Managing Chronic Disease (SEMCD) scale in SSc.