Peer-Led Symptom Management Intervention to Enhance Resilience in People with Systemic Sclerosis: Mediation Analysis from a Randomized Clinical Trial.

OBJECTIVE: Facilitated self-management interventions have the potential to enhance resilience and well-being. We examined whether resilience is a mediator of improving physical and psychological symptoms for people with systemic sclerosis (SSc) who participated in a 12-week online peer-led symptom management intervention. METHODS: We conducted a secondary data analysis from a randomized control trial comparing a peer health coached intervention to a waitlist control. Participants completed the Connor-Davidson Resilience Scale, the Functional Assessment of Chronic Illness Therapy-Fatigue scale, and the Patient Reported Outcomes Measurement Information System measures of pain interference and depressive symptoms at the baseline and at weeks 6 and 12. Linear mixed effect regression models were used to assess the effect of intervention on changes in resilience. Causal mediation analyses were conducted to examine whether changes in resilience at week 12 mediated intervention effects on changes in fatigue, pain interference, and depressive symptoms at week 12. RESULTS: One hundred and seventy-three eligible participants were enrolled. Participants in the intervention group reported improvements in resilience (p < .001). These changes in resilience mediated the intervention effects on fatigue with indirect effect of -1.41 (95% Confidence Interval [CI], -2.41 to -0.41), pain interference of -0.86 (95% CI, -1.65 to -0.08), and depressive symptoms of -1.99 (95% CI, -3.16 to -0.81). CONCLUSION: For participants in the intervention who had positive improvements in their physical and psychological symptoms, increased resilience was a mechanism for these improvements. These findings support the importance of addressing resilience to improve symptoms in similar SSc interventions.

Impact of a resilience-building energy management intervention for people with systemic sclerosis: a mixed methods study.

Objectives: People with SSc often experience fatigue, which significantly affects daily life functioning and quality of life. We aimed to explore participants' experiences of a peer health-coached resilience-building energy management to enhance well-being (RENEW) intervention on symptoms and well-being and to use mixed methods to compare how SSc duration influenced the experiences of participants who had clinically significant fatigue improvement vs those who did not. Methods: Semi-structured interviews were conducted with 21 participants from the parent clinical trial randomized to the RENEW intervention. Data were analysed using the rigorous and accelerated data reduction technique combined with thematic content analysis. A mixed methods approach used a joint display to identify themes related to the impact of SSc duration on fatigue improvement status. Participants were categorized into short/improvement, short/limited improvement, long/improvement, and long/limited improvement. Results: Our team generated four themes: participant and peer health-coach relationship, physical and psychological well-being improvement, need for a tailored approach and easy program access through technology. Mixed methods analysis revealed that, regardless of SSc duration, participants with improved fatigue reported increasing self-awareness of SSc-related symptoms and learning coping strategies to manage fatigue. Participants in the short/improvement group reported preferences for slower pacing of the program and pairing with a coach with similar symptom severity. Participants in the long/limited improvement group sought SSc-specific symptom management information. Conclusion: Incorporating peer health coaches and technology is beneficial for self-management interventions for people with SSc. Future tailoring of RENEW based on SSc duration and symptom severity is needed. Clinical trial registration number: clinicatrials.gov, NCT04908943.

Evaluation of the long-term outcomes of the University of Michigan's Practice-Oriented Research Training (PORT) program.

The University of Michigan created the Practice-Oriented Research Training (PORT) program and implemented it between 2008 and 2018. The PORT program provided research training and funding opportunities for allied healthcare professionals. The program consisted of weekly didactics and group discussion related to topics relevant to developing specific research ideas into projects and funding for a mentored research project for those who submitted a competitive grant application. The goal of this evaluation was to assess the long-term impact of the PORT program on the research careers of the participants. Ninety-two participants (74 staff and 18 faculty) participated in both phases of the program. A mixed-methods approach to evaluation was used; 25 participants who received funding for their research completed surveys, and semi-structured interviews were conducted with eight program participants. In addition, data were collected on participants' publication history. Fifteen out of the 74 staff participants published 31 first-authored papers after participating in PORT. Twelve out of 15 staff participants who published first-authored papers did so for the first time after participating in the PORT program. Results of quantitative and qualitative analyses suggest that the PORT program had positive impacts on both participants and the research community.

Updating and evaluating a research best practices training course for social and behavioral research professionals.

Introduction: The clinical and translational research workforce involved in social and behavioral research (SBR) needs to keep pace with clinical research guidance and regulations. Updated information and a new module on community and stakeholder engagement were added to an existing SBR training course. This article presents evaluation findings of the updated course for the Social and Behavioral Workforce. Methods and Materials: Participants working across one university were recruited. Course completers were sent an online survey to evaluate the training. Some participants were invited to join in a focus group to discuss the application of the training to their work. We performed descriptive statistics and conducted a qualitative analysis on focus group data. Results: There were 99 participants from diverse backgrounds who completed the survey. Most reported the training was relevant to their work or that of the study teams they worked with. Almost half (46%) indicated they would work differently after participating. Respondents with community or stakeholder engaged research experience vs. those without were more likely to report that the new module was relevant to study teams they worked with (t = 5.61, p = 0.001), and that they would work differently following the training (t = 2.63, p = 0.01). Open-ended survey responses (n = 99) and focus group (n = 12) data showed how participants felt their work would be affected by the training. Conclusion: The updated course was rated highly, particularly by those whose work was related to the new course content. This course provides an up-to-date resource for the training and development for the Social and Behavioral Workforce.

Short-latency reaction time and accuracy are impaired in patients with cirrhosis: An international multicenter retrospective study.

AIM: The inability to quickly react to an external event can lead to an increased risk for accidents (e.g., falls, car crashes) in patients with cirrhosis. The aim of this study was to determine whether a novel clinically feasible measure of simple reaction time (SRT) and reaction accuracy (RA)-a go/no-go task occurring within 400 ms-could differentiate patients with cirrhosis from controls. METHODS: This retrospective study included 160 patients with cirrhosis and 160 controls assessed between January 2010 and October 2022. SRT and RA were evaluated using a ruler drop paradigm and compared using propensity score matching. Factors distinguishing patients with cirrhosis from controls were assessed using logistic regression and receiver operating characteristics curve (ROC) analyses. RESULTS: Propensity score matching identified 112 participants in each group with comparable baseline characteristics. As compared with controls, patients with cirrhosis exhibited significantly prolonged SRT (200 vs. 174 ms; P < 0.001) and diminished total RA (63% vs. 73%; P < 0.001). After adjustment for confounding factors, SRT and RA independently identified patients with cirrhosis. ROC analyses showed that SRT more effectively identified patients with cirrhosis than did the number-connection test/trail-making test-B (area under the curve, 0.87 vs. 0.60; P < 0.001). CONCLUSIONS: Patients with cirrhosis demonstrated impairments in short-latency cognitive function. Given that SRT and RA are associated with balance, falls, and response to perturbation, these parameters may present a task-specific method to identify patients with cirrhosis at high risk of falls and motor vehicle crashes. Geriatr Gerontol Int 2024; 24: 25-31.

Effects of a Resilience-Building Energy Management Program on Fatigue and Other Symptoms in Systemic Sclerosis: A Randomized Controlled Trial.

OBJECTIVE: Supported self-management interventions for individuals with systemic sclerosis (SSc) are needed. We examined the effects of a 12-week resilience-building energy management program (called RENEW) for fatigue and other patient-reported outcomes. METHODS: Participants, who had physician-diagnosed SSc, moderate to severe fatigue, and were ≥18 years old, were randomly assigned to RENEW or waitlist control in a 2:1 ratio. The RENEW intervention included an educational website/application plus nine virtual peer-led health coaching sessions. The primary outcome was change in the Functional Assessment of Chronic Illness Therapy-Fatigue scale. Secondary outcomes were change in Patient Reported Outcomes Measurement Information System measures of pain interference and depressive symptoms and Connor-Davidson Resilience Scale. Outcomes were assessed at baseline, 6 weeks, and 12 weeks. Multiple imputation was conducted; linear mixed models were used to assess group differences. A three-way interaction with group, time, and SSc duration was examined in each model. RESULTS: Among 173 participants (mean ± SD age 54.5 ± 11.7 years; 93% female, 85% White), 47% had diffuse cutaneous SSc; 57% were ≤5 years from diagnosis. At 12 weeks, compared to controls, RENEW participants had a clinically meaningful fatigue improvement (ß = -4.7; 95% confidence interval -6.7 to -2.7; P < 0.001) and improvement in all secondary outcomes. Among RENEW participants, individuals with shorter disease duration had greater improvements in fatigue at 12 weeks. CONCLUSION: An mHealth supported self-management intervention improved fatigue and other outcomes, particularly in newly diagnosed patients. This program may be broadly scalable for SSc symptom management.

Non-pharmacological rehabilitation interventions for individuals with antiphospholipid syndrome: A scoping review.

OBJECTIVE: The objective of this study was to explore what non-pharmacological interventions have been examined for individuals with antiphospholipid syndrome (APS). METHODS: We conducted a systematic literature search of the databases PubMed, Embase, Scopus, Web of Science, CINAHL, and ClinicalTrials.gov from 1983-Feb. 2023. Our scoping review included studies that examined non-pharmacological interventions for individuals with APS using patient-reported outcome measures. We excluded studies that reported physiological outcomes only. RESULTS: The review yielded one case study on the safety and efficacy of an exercise program for a 15-year-old male with secondary APS using physiological and patient-reported outcome measures. Despite the lack of evidence of non-pharmacological interventions for individuals with APS, one excluded study reported that individuals with APS want guidance about physical activity and exercise. We also found several types of potentially relevant non-pharmacological interventions for individuals with lupus, a disease that often co-occurs with APS. CONCLUSIONS: Non-pharmacological interventions may offer a solution for addressing some non-thrombotic or non-obstetric APS symptoms, such as neurological, physical, and cognitive symptoms that are not well-controlled by anticoagulation. Due to the unique risks associated with APS, research is needed to determine the safety and efficacy of non-pharmacological interventions, particularly those involving exercise. Adopting a comprehensive, multidisciplinary approach to managing patients with APS and involving rehabilitation professionals, who are experts in the design and delivery of non-pharmacological interventions, may provide a foundation for developing and testing novel interventions that improve health outcomes while also fulfilling unmet needs reported by patients.

Evaluation of an online research best practices training for community health workers and promotoras.

Introduction: Community health workers and promotoras (CHW/Ps) have a fundamental role in facilitating research with communities. However, no national standard training exists as part of the CHW/P job role. We developed and evaluated a culturally- and linguistically tailored online research best practices course for CHW/Ps to meet this gap. Methods: After the research best practices course was developed, we advertised the opportunity to CHW/Ps nationwide to complete the training online in English or Spanish. Following course completion, CHW/Ps received an online survey to rate their skills in community-engaged research and their perceptions of the course using Likert scales of agreement. A qualitative content analysis was conducted on open-ended response data. Results: 104 CHW/Ps completed the English or Spanish course (n = 52 for each language; mean age 42 years SD ± 12); 88% of individuals identified as female and 56% identified as Hispanic, Latino, or Spaniard. 96%-100% of respondents reported improvement in various skills. Nearly all CHW/Ps (97%) agreed the course was relevant to their work, and 96% felt the training was useful. Qualitative themes related to working more effectively as a result of training included enhanced skills, increased resources, and building bridges between communities and researchers. Discussion: The CHW/P research best practices course was rated as useful and relevant by CHW/Ps, particularly for communicating about research with community members. This course can be a professional development resource for CHW/Ps and could serve as the foundation for a national standardized training on their role related to research best practices.

Factors associated with life satisfaction in systemic sclerosis: Examining the moderating roles of social support and spiritual well-being.

Objectives: Systemic sclerosis often has a significant impact on an individual's quality of life. Life satisfaction is a subjective expression of well-being and a key component of quality of life. We examined the associations between functional limitations, social support, and spiritual well-being with life satisfaction and investigated the moderating roles of social support and spiritual well-being on the relationship between functional limitations and life satisfaction in people with systemic sclerosis. Methods: Data were drawn from the baseline University of California Los Angeles Scleroderma Quality of Life Study. Participants completed questionnaires that included demographics, depressive symptoms, functional limitations, social support, and spiritual well-being. The Satisfaction with Life Scale was used to evaluate overall life satisfaction. Data were analyzed using a hierarchical linear regression. Results: Of 206 participants (84% female, 74% White, 52% limited cutaneous subtype, 51% early disease), 38% reported being dissatisfied with their lives. Functional limitations (ß = -0.19, p = 0.006), social support (ß = 0.18, p = 0.006), and spiritual well-being (ß = 0.40, p < 0.001) were associated with life satisfaction, with spiritual well-being emerging as the strongest statistical contributor. However, social support and spiritual well-being did not significantly moderate the relationship between functional limitations and life satisfaction (p = 0.882 and p = 0.339, respectively). Conclusion: Spiritual well-being is particularly important in understanding life satisfaction in people with systemic sclerosis. Future longitudinal research is needed to assess and examine spiritual well-being and its impact on life satisfaction in a larger and more diverse systemic sclerosis sample.

Fatigue as an Understudied Barrier to Participation in Life Roles.

Fatigue is one of the most burdensome and disabling symptoms in numerous acute and chronic conditions and is associated with reduced participation in all aspects of daily life, for example, parenting, employment, and socialization. Historically, occupational practitioners played key roles in fatigue management by creating and implementing interventions. The American Occupational Therapy Foundation convened a Planning Grant Collective workshop with the goal to develop collaborative research ideas and proposals to advance the understanding and management of fatigue. Participants from occupational therapy and other disciplines, with expertise with fatigue or who were conducting research on fatigue, participated in a 3-day virtual workshop. Four main topics emerged: implementation science, treatment taxonomy, trial design and comparative effectiveness, and phenotyping. This white paper describes the proceedings, summarizes the discussions, and outlines recommendations from the PGC workshop on fatigue.

Experiences of Exergaming for Upper Extremity Exercises in People With Systemic Sclerosis.

Impaired upper extremity (UE) function has limited activities of daily living in people with systemic sclerosis (SSc). Exergaming, a combination of gaming and exercises, could be a novel way to improve UE exercise engagement. The objective of this study was to examine the usability of exergaming and to investigate participant experiences after exergaming among people with SSc. Both quantitative and qualitative data were collected. Participants completed questionnaires regarding the usability of exergaming. Semi-structured interviews were conducted directly after exergaming. Descriptive statistics and thematic content analysis were performed. Twenty participants with SSc participated. Exergaming was highly acceptable with a good System Usability Scale score (M = 71.6 ± 9.9). Participants described exergaming as motivating with potential physical and nonphysical benefits. Although results were generally positive, participants expressed some barriers and temporary side effects of using exergaming and needs for improvement. This work stands to inform future exergaming interventions in people with SSc.

Self-administered acupressure for veterans with chronic back pain: Study design and methodology of a type 1 hybrid effectiveness implementation randomized controlled trial.

BACKGROUND: Chronic low back pain is prevalent and disabling in Veterans, but effective pain management is challenging. Clinical practice guidelines emphasize multimodal pain management including evidence-based complementary and integrative health treatments such as acupressure as a first line of care. Unfortunately, the ability to replicate interventions, cost, resources, and limited access are implementation barriers. Self-administered acupressure has shown positive effects on pain and can be practiced anywhere with little to no side effects. METHODS/DESIGN: The aims of this Type 1 hybrid effectiveness implementation randomized controlled trial are 1) to determine effectiveness of a self-administered acupressure protocol at improving pain interference and secondary outcomes of fatigue, sleep quality, and disability in 300 Veterans with chronic low back pain, and 2) evaluate implementation barriers and facilitators to scale-up acupressure utilization within Veterans Health Administration (VHA). Participants randomized to the intervention will receive instruction on acupressure application using an app that facilitates daily practice for 6 weeks. During weeks 6 through 10, participants will discontinue acupressure to determine sustainability of effects. Participants randomized to waitlist control will continue their usual care for pain management and receive study materials at the end of the study period. Outcomes will be collected at baseline and at 6- and 10-weeks post baseline. The primary outcome is pain interference, measured by the PROMIS pain interference scale. Using established frameworks and a mixed methods approach, we will evaluate intervention implementation. DISCUSSION: If acupressure is effective, we will tailor strategies to support implementation in the VHA based on study findings. TRIAL REGISTRATION NUMBER: NCT05423145.

An Interventional Response Phenotyping Study in Chronic Low Back Pain: Protocol for a Mechanistic Randomized Controlled Trial.

Evidence-based treatments for chronic low back pain (cLBP) typically work well in only a fraction of patients, and at present there is little guidance regarding what treatment should be used in which patients. Our central hypothesis is that an interventional response phenotyping study can identify individuals with different underlying mechanisms for their pain who thus respond differentially to evidence-based treatments for cLBP. Thus, we will conduct a randomized controlled Sequential, Multiple Assessment, Randomized Trial (SMART) design study in cLBP with the following three aims. Aim 1: Perform an interventional response phenotyping study in a cohort of cLBP patients (n = 400), who will receive a sequence of interventions known to be effective in cLBP. For 4 weeks, all cLBP participants will receive a web-based pain self-management program as part of a run-in period, then individuals who report no or minimal improvement will be randomized to: a) mindfulness-based stress reduction, b) physical therapy and exercise, c) acupressure self-management, and d) duloxetine. After 8 weeks, individuals who remain symptomatic will be re-randomized to a different treatment for an additional 8 weeks. Using those data, we will identify the subsets of participants that respond to each treatment. In Aim 2, we will show that currently available, clinically derived measures, can predict differential responsiveness to the treatments. In Aim 3, a subset of participants will receive deeper phenotyping (n = 160), to identify new experimental measures that predict differential responsiveness to the treatments, as well as to infer mechanisms of action. Deep phenotyping will include functional neuroimaging, quantitative sensory testing, measures of inflammation, and measures of autonomic tone.

Differences in symptom experience among patients with systemic sclerosis: a cluster analytic approach to identifying subgroups.

OBJECTIVES: Symptoms of people who have SSc are heterogeneous and difficult to address clinically. Because diverse symptoms often co-occur and may share common underlying mechanisms, identifying symptoms that cluster together may better target treatment approaches. We sought to identify and characterize patient subgroups based on symptom experience. METHODS: An exploratory hierarchical agglomerative cluster analysis was conducted to identify subgroups from a large SSc cohort from a single US academic medical centre. Patient-reported symptoms of pain interference, fatigue, sleep disturbance, dyspnoea, depression and anxiety were used for clustering. A multivariate analysis of variance (MANOVA) was used to examine the relative contribution of each variable across subgroups. Analyses of variance were performed to determine participant characteristics based on subgroup assignment. Presence of symptom clusters were tallied within subgroup. RESULTS: Participants (n = 587; 84% female, 41% diffuse cutaneous subtype, 59% early disease) divided into three subgroups via cluster analysis based on symptom severity: (i) no/minimal, (ii) mild, and (iii) moderate. Participants in mild and moderate symptoms subgroups had similar disease severity, but different symptom presentation. In the mild symptoms subgroup, pain, fatigue and sleep disturbance was the main symptom cluster. Participants in the moderate symptoms subgroup were characterized by co-occurring pain, fatigue, sleep disturbance, depression and anxiety. CONCLUSION: Identification of distinct symptom clusters, particularly among SSc patients who experience mild and moderate symptoms, suggests potential differences in treatment approach and in mechanisms underlying symptom experience that require further study.

Perceived Cognitive Function in People With Systemic Sclerosis: Associations With Symptoms and Daily Life Functioning.

OBJECTIVE: Perceived cognitive dysfunction is prevalent in patients with systemic sclerosis (SSc) but not well understood. This study aimed to examine potential factors associated with perceived cognitive function and to investigate the contributions of perceived cognitive function and symptoms to functional measures. METHODS: A cross-sectional survey was conducted among patients with SSc (n = 106). Participants were mainly female (84%) and White (82%). Perceived cognitive function, symptoms, and functional measures were assessed with Patient-Reported Outcomes Measurement Information System (PROMIS) measures. A multivariable regression was conducted to identify factors associated with perceived cognition. Hierarchical linear regressions examined the unique contributions of perceived cognitive function and symptoms to social participation and physical function. RESULTS: Fifty-nine (56%) patients with SSc perceived mild-to-severe cognitive dysfunction. Being on work disability and having more fatigue were both significantly associated with perceived cognitive dysfunction. When examining the contributions of cognition and other symptoms to functional measures, self-reported cognition became nonsignificant after fatigue and pain were entered into the regression model. CONCLUSION: Being on work disability and having more fatigue were most highly associated with perceived cognitive dysfunction in patients with SSc. Unlike fatigue and pain, perceived cognitive function was not independently associated with functional measures. Nonetheless, future research should disentangle cognitive function and other symptoms, as well as their effects on daily activities, in SSc.

Reliability, validity, and responsiveness to change of the Patient-Reported Outcomes Measurement Information System self-efficacy for managing chronic conditions measure in systemic sclerosis.

Objective: The aim of this study is to examine validity, reliability, and responsiveness to change of Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Chronic Conditions in persons with systemic sclerosis. Methods: We conducted a post hoc analysis of the Patient-Reported Outcomes Measurement Information System Self-Efficacy measure and other quality-of-life measures from systemic sclerosis participants from a 16-week randomized control trial. The trial compared an Internet-based self-management program to a control condition where participants were provided an educational book. All participants completed outcome measures at baseline and following the 16-week trial period. Results: The mean age of participants was 53.7 years, 91% were female and systemic sclerosis subtype included 44.9% limited/sine and 43.1% diffuse; mean disease duration was 9.0 years. All self-efficacy subscales (Managing Emotions, Symptoms, Daily Activities, Social Interactions, and Medications/Treatment) demonstrated good internal consistency (.92-.96). All subscales showed statistically significant correlations with other validated measures of depressive symptoms and quality of life (.20-.86) but were not associated with satisfaction nor with appearance. The subscales appropriately discriminated between those with and without depressive symptoms and demonstrated responsiveness to change over the 16-week period for those who had a corresponding increase in reported quality of life. Conclusion: The Patient-Reported Outcomes Measurement Information System Self-Efficacy measure is valid, reliable, and responsive to change for persons with systemic sclerosis.

Domains and outcome measures for the assessment of limited cutaneous systemic sclerosis: an international collaborative scoping review.

OBJECTIVES: The aim of this study was to comprehensively identify instruments within relevant domains employed to assess lcSSc since the endorsement of its consensus definition in 1988. The overall objective is to inform the creation of a Combined Response Index for Scleroderma Trials Assessing lcSSc (CRISTAL). METHODS: MEDLINE and Embase were searched using terms selected to comprehensively retrieve titles and abstracts mentioning both lcSSc and dcSSc, along with those only mentioning lcSSc, SSc sine scleroderma, limited SSc and/or CREST/CRST. Because our initial assessment of the literature revealed that very few studies included only lcSSc subjects, we also assessed literature that included both cutaneous subsets. A total of 3964 titles and abstracts were screened by two reviewers, and 270 articles were selected for data extraction. RESULTS: We identified 27 domains encompassing 459 instruments. Instruments from 'Skin involvement', 'Pulmonary involvement' and 'Health-related quality of life and general functioning' were the most frequently retrieved. Among the 15 most represented instruments announced as primary end points in efficacy or effectiveness studies, 7 were clinician-reported outcomes (ROs), 7 were patient ROs, and one was a performance outcome (6 min-walk test). The mean proportion of lcSSc patients in studies of lcSSc, including studies that mention both lcSSc and dcSSc, was 56.4%, demonstrating that this subset is underrepresented in the literature, given that the prevalence of lcSSc ranges from 60% to 80% in national registries and international cohorts. CONCLUSION: This scoping literature review provides a comprehensive identification of domains and outcomes used to assess lcSSc. Our results also highlight that lcSSc is underrepresented in the literature.

Cognitive difficulties in people with systemic sclerosis: a qualitative study.

OBJECTIVES: This study used a qualitative approach to explore how people with SSc experience cognitive changes and how cognitive difficulties impact their functioning. METHODS: Four 90-min focus groups of adults with SSc and self-reported changes in cognition were recruited from a SSc research registry and targeted social media. A focus group guide elicited information from participants via open-ended questions. Content analysis was conducted using grounded theory methodology. RESULTS: There were 20 participants (mean age = 55.5 (11.4) years) comprising 16 (80%) females, 14 (70%) Caucasians, and 11 (55%) people with diffuse cutaneous SSc. Study themes included cognitive difficulties as part of daily life experience, impact of cognitive difficulties on daily life functioning, coping strategies and information seeking. Participants used different terms to describe their experience of cognitive difficulties, and most encountered deficits in short-term memory, language difficulties, decreased executive function, difficulties with concentration and focus, and slow processing speed. Participants expressed frustration with their cognitive difficulties and used coping strategies to lessen their impact. Participants were uncertain about the causes and wanted to understand factors contributing to cognitive difficulties as well as how to manage them. CONCLUSION: Participants with SSc reported cognitive difficulties that had a substantial negative impact on their lives. Improved understanding of cognitive changes could subsequently facilitate development of relevant therapeutic interventions or educational programmes for symptom self-management to reduce impact of cognitive difficulties in people with SSc.

Community health workers and promotoras' perspectives of a research best practice course: A focus group study.

Introduction: Community Health Workers and Promotoras (CHW/Ps) are valued for their role in helping to engage community members in research. CHW/Ps have traditionally received variable training in research fundamentals, including importance and promotion of research rigor to establish consistency in the methods used over time. Research best practices training exists for research professionals, but no standard training is provided as part of the CHW/P job role. To develop this CHW/P research best practices training, our team engaged English- and Spanish-speaking CHW/Ps to watch an early version of an online module and to examine perceptions of the relevance of such a training and optimal delivery methods. Methods: Six virtual focus group discussions were conducted (three in English and three in Spanish) across different US geographic regions with currently employed CHW/Ps. Results: Forty CHW/Ps participated (95% female, mean age 44 years, 58% identifying as Hispanic/Latino). Four themes emerged: relevance of training, benefits of providing a certificate of completion, flexible training delivery modalities, and peer-led training. Discussion: With participation from representatives of the intended learner group of CHW/Ps, our team found that CHW/Ps valued learning about research best practices. They perceived culturally- and linguistically appropriate health research training to be highly relevant to their role, particularly for communicating key information to community members about their participation in health research. Additionally, participants provided input on effective dissemination of the training including the benefit of having proof of course completion, involvement of peer trainers, and value of providing the option to participate in online training.

The association between hand disease severity and fatigue in individuals with systemic sclerosis: a scoping review.

BACKGROUND: Hand disease severity in people with systemic sclerosis (SSc) arises from connective tissue and vascular changes causing functional limitations, pain, and disability. Fatigue is not well-understood in SSc and reported to be highly distressing. It is not known how fatigue relates to these disease changes. The objective of this study was to identify which elements of hand disease severity contribute to fatigue in individuals with SSc. METHODS: Five online databases and Google Scholar were searched to identify publications through 2021 presenting data related to hand disease severity and fatigue. RESULTS: Five articles met the inclusion criteria. The samples were 72-91% female, and 35-100% with diffuse SSc. Measures of disease severity included skin thickening (modified Rodnan score), joint involvement (mobility, tenderness, swelling), and digital ulcers. Fatigue was measured by various self-report. Joint involvement was strongly associated with fatigue. Skin thickening weakly associated with fatigue. The perceived interference of digital ulcers in daily activities was related to fatigue. CONCLUSIONS: Few studies have examined how fatigue relates to hand disease severity. While joint involvement was associated with fatigue over time and in cross-sectional studies, digital ulcers may be associated with fatigue indirectly. A conceptual model is proposed with implications for future research.Implications for RehabilitationStructural disease changes that manifest in the hands, is often associated with pain, disability, and fatigue in SSc.Fatigue is one of the most distressing symptoms of SSc and reported by 61-90% of individuals with SSc, but is not well characterized.Of measures of hand disease severity, joint involvement (contractures, swollen and tender joints) is most associated with fatigue in individuals with SSc and more so if pain is involved.A better understanding of the physiological features of disease and fatigue could provide insight into development of fatigue management interventions and help rheumatology providers work with patients to manage their fatigue.Rehabilitation assessments and interventions for hand disability need to be considered as important elements in improving all elements of quality of life for individuals with systemic sclerosis.