Factors associated with physical function among people with systemic sclerosis: a SPIN cohort cross-sectional study.

OBJECTIVES: To compare physical function in systemic sclerosis (SSc, scleroderma) to general population normative data and identify associated factors. METHODS: Scleroderma Patient-centered Intervention Network Cohort participants completed the Physical Function domain of the Patient-Reported Outcomes Measurement Information System Version 2 upon enrolment. Multivariable linear regression was used to assess associations of sociodemographic, lifestyle, and disease-related variables. RESULTS: Among 2,385 participants, mean physical function T-score (43.7, SD = 8.9) was ∼2/3 of a standard deviation (SD) below the US general population (mean = 50, SD = 10). Factors associated in multivariable analysis included older age (-0.74 points per SD years, 95% CI -0.78 to -1.08), female sex (-1.35, -2.37 to -0.34), fewer years of education (-0.41 points per SD in years, -0.75 to -0.07), being single, divorced, or widowed (-0.76, -1.48 to -0.03), smoking (-3.14, -4.42 to -1.85), alcohol consumption (0.79 points per SD drinks per week, 0.45-1.14), BMI (-1.41 points per SD, -1.75 to -1.07), diffuse subtype (-1.43, -2.23 to -0.62), gastrointestinal involvement (-2.58, -3.53 to -1.62), digital ulcers (-1.96, -2.94 to -0.98), moderate (-1.94, -2.94 to -0.93) and severe (-1.76, -3.24 to -0.28) small joint contractures, moderate (-2.10, -3.44 to -0.76) and severe (-2.54, -4.64 to -0.44) large joint contractures, interstitial lung disease (-1.52, -2.27 to -0.77), pulmonary arterial hypertension (-3.72, -4.91 to -2.52), rheumatoid arthritis (-2.10, -3.64 to -0.56) and idiopathic inflammatory myositis (-2.10, -3.63 to -0.56). CONCLUSION: Physical function is impaired for many individuals with SSc and associated with multiple disease factors.

Measurement equivalence of the English and French versions of the self-efficacy to manage chronic disease scale: a Scleroderma Patient-Centered Intervention Network (SPIN) study.

PURPOSE: The Self-Efficacy to Manage Chronic Disease (SEMCD) scale is widely used, including in systemic sclerosis (SSc). The SEMCD has been validated in SSc, but the metric equivalence of the English and French versions has not been assessed (i.e., whether psychometric properties are equivalent across English and French). METHODS: Participants were adults from the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort (N = 2159) who completed baseline measures in English (n = 1473) or French (n = 686) between May 2014 to July 2020. Analyses assessed internal consistency reliability via Cronbach's alpha and McDonald's omega, convergent validity via Pearson's correlations, structural validity via confirmatory factor analysis (CFA), and differential item functioning via the Multiple-Indicator Multiple-Cause (MIMIC) model. RESULTS: Internal consistency reliability was high in English (α = .93, ω = .93) and French (α = .92, ω = .93). All correlations between the SEMCD and measures of health outcomes were moderate to large, statistically significant, and in the hypothesized direction in both languages. The CFA demonstrated that the one-factor model of self-efficacy, overall, fit reasonably well (CFI = .96, TLI = .93, SRMR = .03, RMSEA = .14). Standardized factor loadings were large (.76 to .88). Three items displayed statistically significant uniform DIF and all six displayed nonuniform DIF; all DIF was of minimal magnitude. Comparison of unadjusted and DIF-adjusted models indicated that DIF did not meaningfully impact total score (ICC = 0.999, r = 0.999). CONCLUSION: Scores from English- and French-speaking adults with SSc can be combined for analysis or compared.

Moderators of Loneliness Trajectories in People with Systemic Sclerosis During the COVID-19 Pandemic: A SPIN COVID-19 Cohort Longitudinal Study.

BACKGROUND: Many individuals with systemic sclerosis (SSc) are at heightened risk for COVID-19 related morbidity and isolation due to interstitial lung disease, frailty, and immunosuppressant use. Minimal research has explored loneliness predictors in individuals with chronic illnesses during COVID-19. This study evaluated moderators of loneliness trajectories in individuals with SSc during COVID-19. METHODS: Longitudinal data were analyzed across 30 timepoints from April 2020 to May 2022 from 775 adults in the Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort. Hierarchical linear modeling evaluated cross-level moderators of loneliness trajectories, including marital status, baseline number of household members, number of virtual or telephone one-on-one or virtual group conversations, number of hours spent enjoying in-person household conversations or activities, and satisfaction with quality of in-person household conversations (all in the past week). Level-1 moderation analyses assessed effects of conversation, activity, and satisfaction means and slopes over time. RESULTS: Baseline values were not statistically significant moderators of loneliness trajectories. Higher mean (averaged over time) virtual or telephone one-on-one and in-person household conversations, in-person household activity, and in-person household conversation satisfaction were associated with lower loneliness trajectories (ps < .05). The relationship between in-person household conversation satisfaction and loneliness trajectory was statistically significantly but minimally attenuated over time (p < .001). CONCLUSIONS: For people with SSc, higher mean conversation, activity, and satisfaction variables were associated with lower levels of loneliness during the pandemic, but changes in these social variables were generally not predictive of changes in loneliness.

To Operate or Not to Operate? Reconstructive Surgical Burden and Quality of Life of Pediatric Patients with Facial Differences.

OBJECTIVE: The Craniofacial Condition Quality of Life Scale (CFC-QoL) was used to evaluate the relationship between surgical burden and quality of life (QoL). DESIGN: Patient-parent dyads completed the CFC-QoL which queries the following QoL domains: Bullying, Peer Problems, Psychological Impact, Family Support, Appearance Satisfaction, and Desire for Appearance Change. Stepwise multivariate linear regressions were performed for each QoL domain. SETTING: Urban tertiary care center. PATIENTS, PARTICIPANTS: Pediatric patients with facial differences, and their parents. INTERVENTION: Survey study. MAIN OUTCOME MEASURE(S): Demographic, diagnostic, and surgical characteristics were collected. Surgical burden was calculated as the standard deviation from the mean number of surgeries per diagnostic cohort. RESULT: Patients (N = 168) were majority female (57.1%) and Hispanic (64.3%). Diagnoses were cleft lip and/or palate (CLP,n = 99) or other craniofacial conditions (CFC,n = 69). Average patient age was 2.3 ± 5.6 years at first reconstructive surgery and 12.3 ± 3.4 years at study enrollment. Patients received an average of 4.3 ± 4.1 reconstructive surgeries.Worse Bullying was associated with higher surgical burden. Worse Peer Problems was associated with higher surgical burden, but only for children with non-CLP CFCs. Worse Family Support was associated with CFC diagnosis, female sex, and higher surgical burden. Worse Psychological Impact was associated with higher surgical burden. Worse Appearance Satisfaction was associated with younger age and with lower surgical burden. Greater Desire for Appearance Change was associated with older age, higher surgical burden, CLP diagnosis, female sex, and non-Hispanic ethnicity. Socioeconomic status did not predict QoL per patient self- or parent-proxy report. CONCLUSIONS: Higher surgical burden was associated with worse QoL outcomes in multiple domains.

The Scale of Ethnic Experience long and short forms in Spanish and English: Psychometric findings from the HCHS/SOL Sociocultural Ancillary Study.

OBJECTIVE: To evaluate the psychometric properties and cross-group equivalence of scores from Spanish and English long and short forms of the Scale of Ethnic Experience (SEE; Malcarne et al., 2006) in a multisite representative cohort from the Hispanic Community Health Study/Study of Latinos (HCHS/SOL) Sociocultural Ancillary Study. METHOD: Hispanic/Latino adults (N = 5,313) completed a battery of measures, including the original 32-item SEE, in their preferred language of Spanish or English. A 12-item version of the SEE, comprised of three items representing each of the four original subscales, was created and evaluated for invariance across language and self-identified heritage (Mexican, Puerto Rican, Cuban, Central American, Dominican, and South American). Internal consistency reliability and convergent/discriminant validity of the subscales were also evaluated. RESULTS: Results of confirmatory factor analysis (CFA) did not support the four-subscale structure of the original 32-item SEE (Ethnic Identity, Perceived Discrimination, Social Affiliation, and Mainstream Comfort). Multigroup CFA supported the structural invariance of the SEE-Short Form across language and heritage groups. Patterns for convergent and discriminant validity were generally within expected effect sizes and directions, and consistent across language and heritage. CONCLUSIONS: Psychometric findings support the utility of the newly developed 12-item short form of the SEE for measuring multiple dimensions of ethnic experience in Hispanic/Latino adults in the United States. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Clinical trials-related knowledge, attitudes, and behaviors among Black and Latina women: A randomized controlled trial of the Women United: Clinical Trials and the Fight Against Breast Cancer Program.

Black and Latino adult cancer patients are underrepresented in cancer clinical trials, which limits generalizability of findings and amplifies disparities in healthcare access and outcomes. Community-level education programs designed to address barriers to participation could improve representation in cancer clinical trials. Through a community-campus partner framework, this study evaluated the Women United: Clinical Trials and the Fight Against Breast Cancer Program in Spanish and English. Participants were 422 women (141 Black, 140 Latina Spanish preference, 141 Latina English preference) who were randomized to view either the intervention (n = 215) or a control (n = 207) program. Assessments of clinical trials knowledge and barriers to clinical trials participation were taken before and after viewing. Results suggested that clinical trials knowledge increased and perceived barriers to participation decreased for those who viewed the educational program. More specifically, those in the intervention condition perceived fewer barriers related to personal benefits, mistrust, and familiarity of clinical trials. As expected, there were no differences in perceived barriers related to community support for either condition. Participants in both conditions were equally likely to join a subsequent study or a clinical trials community ambassador program. There were no differences in any of the outcomes across ethnicity or language, suggesting the program works equivalently across groups. This program is easy to administer and can be recommended for use among Black and Latina women to address factors related to clinical trials participation.

Informant-Reported Cognitive Decline is Associated with Objective Cognitive Performance in Parkinson's Disease.

OBJECTIVE: The utility of informant-based measures of cognitive decline to accurately describe objective cognitive performance in Parkinson's disease (PD) without dementia is uncertain. Due to the clinical relevance of this information, the purpose of this study was to examine the relationship between informant-based reports of patient cognitive decline via the Informant Questionnaire of Cognitive Decline in the Elderly (IQCODE) and objective cognition in non-demented PD controlling for cognitive status (i.e., mild cognitive impairment; PD-MCI and normal cognition; PD-NC). METHOD: One-hundred and thirty-nine non-demented PD participants (PD-MCI n = 38; PD-NC n = 101) were administered measures of language, executive function, attention, learning, delayed recall, visuospatial function, mood, and motor function. Each participant identified an informant to complete the IQCODE and a mood questionnaire. RESULTS: Greater levels of informant-based responses of patient cognitive decline on the IQCODE were significantly associated with worse objective performance on measures of global cognition, attention, learning, delayed recall, and executive function in the overall sample, above and beyond covariates and cognitive status. However, the IQCODE was not significantly associated with language or visuospatial function. CONCLUSIONS: Results indicate that informant responses, as measured by the IQCODE, may provide adequate information on a wide range of cognitive abilities in non-demented PD, including those with MCI and normal cognition. Findings have important clinical implications for the utility of the IQCODE in the identification of PD patients in need of further evaluation, monitoring, and treatment.

Psychometric evaluation of the Behavioral Activation for Depression Scale-Short Form in Alzheimer's caregivers.

The present study evaluated the psychometric properties of scores from the Behavioral Activation for Depression Scale Short Form (BADS-SF) in a sample of older age, spousal, Alzheimer's caregivers participating in an evaluation of Behavioral Activation (BA) therapy compared to an Information Support (IS) group. At baseline assessment, caregivers (N = 170) completed the BADS-SF, which is comprised of two subscales (Activation and Avoidance) that can be summed to produce a total score. Confirmatory factor analysis was used to evaluate structural validity. A two-factor solution fit the data adequately; however, the first item on the scale did not load onto either factor. Internal consistency reliability for the total and subscales scores was poor as measured by Cronbach's alpha. Construct validity was evidenced by significant expected relationships with depression. Pre- to post-intervention scores did not evidence sensitivity to change. These findings provide some support but raise important concerns about the validity and reliability of BADS-SF scores in a population of older adult caregivers.

Sleep disturbance and cancer-related fatigue symptom cluster in breast cancer patients undergoing chemotherapy.

PURPOSE: Sleep disturbance and cancer-related fatigue (CRF) are among the most commonly reported symptoms associated with breast cancer and its treatment. This study identified symptom cluster groups of breast cancer patients based on multidimensional assessment of sleep disturbance and CRF prior to and during chemotherapy. METHODS: Participants were 152 women with stage I-IIIA breast cancer. Data were collected before chemotherapy (T1) and during the final week of the fourth chemotherapy cycle (T2). Latent profile analysis was used to derive groups of patients at each timepoint who scored similarly on percent of the day/night asleep per actigraphy, the Pittsburgh Sleep Quality Index global score, and the five subscales of the Multidimensional Fatigue Symptom Inventory-Short Form. Bivariate logistic regression evaluated if sociodemographic/medical characteristics at T1 were associated with group membership at each timepoint. RESULTS: Three groups (Fatigued with sleep complaints, Average, Minimal symptoms) were identified at T1, and five groups (Severely fatigued with poor sleep, Emotionally fatigued with average sleep, Physically fatigued with average sleep, Average, Minimal symptoms) at T2. The majority of individuals in a group characterized by more severe symptoms at T1 were also in a more severe symptom group at T2. Sociodemographic/medical variables at T1 were significantly associated with group membership at T1 and T2. CONCLUSIONS: This study identified groups of breast cancer patients with differentially severe sleep disturbance and CRF symptom profiles prior to and during chemotherapy. Identifying groups with different symptom management needs and distinguishing groups by baseline sociodemographic/medical variables can identify patients at risk for greater symptom burden.

Psychosocial and neighborhood correlates of health-related quality of life: A multi-level study among Hispanic adults.

OBJECTIVE: Improvement in health-related quality of life (HRQoL) is a public health goal of Healthy People 2020. Hispanics living in the United States are at risk for poor HRQoL, but the causes and correlates of this risk are not well understood. Thus, the present study examined individual-level psychosocial and neighborhood-level built environment correlates of physical and mental HRQoL among Hispanic adults. METHOD: A community sample of Hispanic adults (N = 383) completed self-report health-related questionnaires, and census tract was used to collect data on neighborhood-level built environment variables. Multilevel modeling was used to examine individual-level psychosocial (language preference, religiosity, subjective social status, discrimination, and number of years lived in the United States) and neighborhood-level built-environment (the retail food environment, proximity to alcohol retailers, and tobacco retailer density) correlates of physical and mental HRQoL. RESULTS: Higher subjective social status was significantly associated with better HRQoL, and more experiences with discrimination were significantly associated with lower HRQoL. For physical HRQoL, these relationships were stronger in neighborhoods with a higher density of tobacco retail outlets. CONCLUSIONS: Findings from this study suggest that subjective social status and discrimination play important roles in HRQoL among Hispanics, in particular in neighborhoods with a higher density of tobacco retail outlets. This study highlights the importance of considering neighborhood context, and in particular neighborhood disadvantage, when examining the relationship between social status, discrimination and HRQoL among Hispanics. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Efficacy of problem-solving therapy for spouses of men with prostate cancer: A randomized controlled trial.

OBJECTIVE: Prostate cancer can have a significant negative impact on patients and their spouses. Problem-solving therapy (PST) has been shown to help reduce distress and improve quality of life among cancer and caregiver populations. This study tested the efficacy of PST for spouses of men with prostate cancer. METHODS: Spouses of men diagnosed with prostate cancer within the past 18 months (N = 164) were randomly assigned to PST (n = 78) or usual psychosocial care (UPC; n = 86). Spouses completed measures of constructive and dysfunctional problem solving, cancer-related distress, mood, physical and mental health, and dyadic adjustment at preintervention and post-intervention and 3-month post-intervention follow-up. RESULTS: Constructive problem solving increased from pre-intervention to post-intervention among spouses receiving PST but not for spouses receiving UPC; this was maintained at follow-up. There was no decrease in dysfunctional problem solving. Spouses receiving PST versus UPC reported less cancer-related distress post-intervention and at follow-up. There were no significant changes in mood or physical and mental health. Dyadic adjustment was significantly better for spouses receiving PST versus UPC at post-intervention but not at follow-up. Improvements in constructive problem solving mediated better mood and dyadic adjustment post-intervention. CONCLUSIONS: Results support the efficacy of PST for improving spouses' constructive problem solving. There was evidence of both direct and mediated positive effects of PST for both individual and dyadic adjustment. PST may be useful for improving individual and dyadic outcomes for spouses of men with prostate cancer.

Revisiting the Reproductive Concerns After Cancer (RCAC) scale.

OBJECTIVE: The aims of this study were to examine the factor structure and reliability of the multidimensional Reproductive Concerns After Cancer (RCAC) scale in a sample of female cancer survivors during their reproductive years, younger than age 45. METHODS: Female reproductive-aged survivors (N = 238; current age, 18 to 44 y) with a variety of cancer diagnoses completed a web-based survey that included the RCAC scale. Three structural models were examined via confirmatory factor analysis: (a) one-factor, (b) higher-order with one second-order factor and six first-order factors, and (c) oblique six-factor. Reliability was examined using omega total and Revelle omega total. RESULTS: Only the oblique six-factor model of the RCAC scale fits well. Omega total and Revelle omega total estimates for all of the six three-item subscales were in the nearly satisfactory to good range (.66 to.87). CONCLUSIONS: The RCAC scale was found to have satisfactory factor structure and reliability when measuring a range of reproductive concerns experienced by female reproductive-aged survivors. The RCAC scale is a multidimensional measure of varying aspects of reproductive concerns, and results suggest that the scale may be best represented as a profile of subscale scores. The subscale scores would be useful for tailoring recommendations and interventions to more effectively address the diverse reproductive concerns of female reproductive-aged survivors.

Patient-reported health-related quality of life outcomes in supportive-care interventions for adults with brain tumors: A systematic review.

OBJECTIVES: The objectives of this systematic review were to (a) identify supportive-care (psychosocial/behavioral, pharmacological, complementary, or alternative) interventions that have been evaluated via randomized controlled trials (RCTs) to improve patient-reported health-related quality of life (HRQoL) among adults with brain tumors, (b) evaluate the quality of the intervention studies, and (c) evaluate if developed interventions have been efficacious at improving HRQoL, as compared with control conditions in RCTs. METHODS: This systematic review was conducted using preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines. Four databases were searched for RCTs of supportive-care interventions for adults with brain tumors, primary or metastatic, that included a patient-reported HRQoL outcome. Quality of the included studies was assessed using the Effective Public Health Practice Project Quality Assessment Tool for Quantitative Studies. RESULTS: Ten RCTs involving 640 patients with either a primary or metastatic brain tumor investigating supportive-care interventions with a HRQoL outcome were identified. In terms of quality, three of the studies received a "strong" rating, three received a "moderate" rating, and four of the studies received a "weak" rating. Only two of the interventions (ie, a home-based psychosocial intervention and individualized acupuncture with standard rehabilitation) demonstrated improvements in HRQoL over control conditions. CONCLUSIONS: HRQoL is of the utmost importance when treating patients with brain tumors. Yet there is a notable paucity of research to inform clinical decisions and evidence-based practice. More high-quality studies of interventions aimed at improving HRQoL are needed.

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. Results: Demographic, organ involvement and antibody profile data for SPIN (N = 1125) were generally comparable with that of the EUSTAR (N = 7319) and CSRG (N = 1390) cohorts. There was a high proportion of women and White patients in all cohorts, though relative proportions differed. Scl70 antibody frequency was highest in EUSTAR, somewhat lower in SPIN, and lowest in CSRG, consistent with the higher proportion of interstitial lung disease among dcSSc patients in SPIN compared with in CSRG (48.5 vs 40.3%). RNA polymerase III antibody frequency was highest in SPIN and remarkably lower in EUSTAR (21.1 vs 2.4%), in line with the higher prevalence of SSc renal crisis (4.5 vs 2.1%) in SPIN. Conclusion: Although there are some differences, the SPIN Cohort is broadly comparable with other large prevalent SSc cohorts, increasing confidence that insights gained from the SPIN Cohort should be generalizable, although it should be noted that all three cohorts include primarily White participants.

Body Image and Condomless Anal Sex Among Sexual Minority Men Living with HIV.

The interaction of body dissatisfaction and appearance investment (importance and effort ascribed to appearance) in relation to condomless anal sex has not previously been examined. Body dissatisfaction in the context of varying degrees of appearance investment may yield divergent sexual risk outcomes. Sexual minority men living with HIV (N = 105) completed a battery of self-report measures. A generalized linear model identified a significant interaction [b = 0.08 (95% CI 0.01, 0.16), p = 0.033] such that when appearance investment was low, body dissatisfaction was associated with fewer condomless anal sex acts; when appearance investment was high, body dissatisfaction was associated with increased condomless anal sex.

College Women's Responses to a Celebrity Health Disclosure.

Celebrities can have a powerful influence on people's health-related attitudes and behaviors, often by publicly disclosing their own personal health decisions. In May 2013, Angelina Jolie, an internationally recognized actress, director, and author, wrote an op-ed for the New York Times disclosing her decision to undergo a prophylactic double mastectomy to reduce her risk of breast cancer after learning that she carried the BRCA1 gene mutation. This cross-sectional study examined whether exposure to Angelina Jolie and her mastectomy disclosure and parasocial involvement (PSI) with Angelina Jolie were related to female college students' perceived risk of breast cancer and breast cancer screening intentions. Participants were 198 female undergraduate college students. Data were collected anonymously via an online questionnaire and analyzed using bivariate correlations and hierarchical linear regression analyses. Neither exposure to Angelina and her disclosure nor PSI with Angelina Jolie was related to participants' attitudes or behaviors related to breast cancer. However, having a family history of cancer was associated with more exposure to Angelina Jolie and her disclosure. Findings suggest that exposure to and PSI with a celebrity who has disclosed a health-related message may not be sufficient to motivate young women to change their health-related attitudes and behaviors. Future studies should explore how celebrities disclosing different types of health issues might influence the attitudes and behaviors of young women.

Psychometric Properties of the God Locus of Health Control Scale in Churchgoing Latinas.

This study evaluated the psychometric properties of the Spanish version of the God Locus of Health Control scale, a measure of the extent to which an individual believes God has control over one's health, among a sample of churchgoing Latinas (N = 398). Confirmatory factor analysis showed support for a one-factor structure and internal consistency reliability, as measured by Cronbach's coefficient alpha, was good. Evidence for convergent validity was demonstrated by significant correlations in the expected magnitudes and directions with two measures of perceived religious involvement in health. These results suggest that the God Locus of Health Control scale can be used to examine the extent to which God is perceived to control an individual's health among Latinas.

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. Enrolling physicians provided medical data. To examine convergent validity, hypotheses on the direction and magnitude of correlations with legacy measures were tested. For clinical associations, t -tests were conducted for dichotomous variables and PROMIS-29v2 domain scores. Effect sizes (ESs) were labelled as small (<0.25), small to moderate (0.25-0.45), moderate (0.46-0.55), moderate to large (0.56-0.75) and large (>0.75). Results: There were 696 patients (87% female), mean ( s . d .) disease duration 11.6 (8.7) years, 57% with limited cutaneous subtype. Validity indices were consistent with seven of nine hypotheses (| r | =0.51-0.87, P < 0.001), with minor divergence for two hypotheses. Gastrointestinal involvement was associated with significantly worse outcomes for all eight PROMIS-29v2 domains (moderate or moderate to large ES in six of eight). Presence of joint contractures was associated with significant decrements in seven domains (small or small to moderate ESs). Skin thickening, diffuse cutaneous subtype and presence of overlap syndromes were significantly associated (small or small to moderate ESs) with five or six domains. Conclusion: This study further establishes the validity of the PROMIS-29v2 in SSc and underlines the importance of gastrointestinal symptoms and joint contractures in reduced health-related quality of life.

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

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.