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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.
Subject(s)
Body Image/psychology , Condoms , HIV Infections/psychology , Homosexuality, Male/psychology , Risk-Taking , Unsafe Sex/statistics & numerical data , Adolescent , Adult , Aged , Anti-HIV Agents/administration & dosage , Cross-Sectional Studies , HIV , HIV Infections/drug therapy , HIV Infections/epidemiology , Homosexuality, Male/statistics & numerical data , Humans , Male , Massachusetts/epidemiology , Middle Aged , Physical Appearance, Body , Sexual Behavior/psychology , Socioeconomic Factors , Surveys and Questionnaires , Young AdultABSTRACT
OBJECTIVES: Appearance concerns are common in systemic sclerosis (SSc) and have been linked to younger age and more severe disease. No study has examined their association with sex or race/ethnicity. METHODS: SSc patients were sampled from the Scleroderma Patient-centered Intervention Network Cohort. Presence of appearance concerns was assessed with a single item, and medical and sociodemographic information were collected. RESULTS: Of 644 patients, appearance concerns were present in 72%, including 421 of 565 women (75%), 42 of 79 men (53%), 392 of 550 patients who identified as White (71%), 35 of 41 who identified as Black (85%), and 36 of 53 who identified as another race/ethnicity (68%). In multivariate analysis, women had significantly greater odds of reporting appearance concerns than men (odds ratio (OR)=2.97, 95% confidence interval (CI)=1.78-4.95, p<.001). Black patients had significantly greater odds of appearance concerns than White patients in unadjusted (OR=2.64, 95% CI=1.01-6.34, p=.030), but not multivariate analysis (OR=1.76, 95% CI=0.67-4.60, p=.250). Compared to a general population sample, appearance concerns were substantially more common in SSc, particularly for men across all age groups and for younger women. The most commonly reported features of concern were related to the face and head, followed by the hands and fingers; this did not differ by sex or race/ethnicity. CONCLUSIONS: Appearance concerns were common in SSc. Women were substantially more likely than men to have appearance concerns. Although non-significant in multivariate analysis, Black patients were more likely to have concerns than White patients, likely due to more severe changes in appearance.
Subject(s)
Black People/psychology , Body Image/psychology , Health Knowledge, Attitudes, Practice/ethnology , Scleroderma, Systemic/ethnology , Scleroderma, Systemic/psychology , White People/psychology , Adolescent , Adult , Black or African American/psychology , Aged , Canada/epidemiology , Chi-Square Distribution , Cohort Studies , Female , Humans , Male , Middle Aged , Multivariate Analysis , Odds Ratio , Risk Factors , Scleroderma, Systemic/diagnosis , Sex Factors , Stress, Psychological/ethnology , Stress, Psychological/psychology , Surveys and Questionnaires , United Kingdom/epidemiology , United States/epidemiology , Young AdultABSTRACT
PURPOSE OF REVIEW: In 2010, an international consortium of researchers published a consensus agenda for research on psychosocial aspects of systemic sclerosis (SSc; scleroderma). The present review summarizes recent research on SSc-related depression and anxiety, fatigue and sleep, pain, pruritus, body image distress, sexual function, work disability, healthcare needs, psychosocial interventions, and psychoneuroimmunology. RECENT FINDINGS: Researchers have used structured interviews to establish prevalence rates for clinical mood disorders in SSc, although anxiety remains understudied and distress may be a useful outcome to consider. Longitudinal research has identified predictors of fatigue. Research on body image distress suggests the importance of changes in the facial skin and hands. Studies have identified sexual function problems in women and men with SSc. A prospective study found that breathing problems and fatigue predicted workplace disability. A randomized controlled trial evaluating multidisciplinary care showed benefits for health-related quality of life. SUMMARY: There has been a recent expansion in studies of psychosocial aspects of SSc, and in the validation of psychosocial measures that can be used in clinics to identify problems and track outcomes; however, prospective studies remain scarce. To better address the psychosocial needs of persons with SSc, interventions need to be developed and tested via randomized controlled trials with power to detect clinically meaningful changes.
Subject(s)
Mental Disorders/etiology , Scleroderma, Systemic/psychology , Body Dysmorphic Disorders/etiology , Depression/etiology , Fatigue/etiology , Health Services Needs and Demand , Humans , Mental Disorders/therapy , Pain/etiology , Pruritus/etiology , Scleroderma, Systemic/rehabilitation , Sexual Dysfunctions, Psychological/etiology , Sleep Wake Disorders/etiology , Work Capacity EvaluationABSTRACT
Background: Guided by the reserve capacity model, we examined the roles of socioeconomic status (SES), reserve capacity, and negative emotions as determinants of pain in patients with Rheumatoid Arthritis (RA). Methods: The study used cross-sectional baseline data from 106 adults in a clinical trial comparing behavioral treatments for RA. Structural equation modeling evaluated the direct effects of SES, reserve capacity (helplessness, self-efficacy, social support) and negative emotions (stress and depressive symptoms) on pain, and the indirect effects of SES as mediated by reserve capacity and negative emotions. Results: Results showed that low SES contributed to greater pain, through lower reserve capacity and higher negative emotions. Mediational analyses showed that reserve capacity and negative emotions partially mediated the effect of SES on pain. Conclusions: The findings indicate that interventions that target negative emotions in patients with low SES may facilitate better pain control with RA. Trial registration: clinicaltrials.gov NCT00072657; 02/2004.
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BACKGROUND: Hereditary angioedema (HAE) is a rare but serious disease marked by swelling attacks in the extremities, face, trunk, airway, or abdominal areas that can be spontaneous or the result of trauma and other triggers. It can be life-threatening due to the risk of asphyxiation. While there have been major advancements in our understanding of the immunogenetics of HAE, there are significant gaps in the literature regarding understanding of the humanistic and economic impact of the disease, particularly in Europe. The purpose of the HAE Burden of Illness Study-Europe (HAE-BOIS-Europe), the development and methodology of which is described here, is to better understand the management and impact of HAE from the patient perspective in Europe. METHODS/DESIGN: This is a cross-sectional study in which retrospective data were also collected being conducted in Denmark, Germany and Spain. The study is open to patients ages 12 and older with a diagnosis of HAE-I or HAE-II. Data collection includes: (i) a survey on individuals' health care resource use, direct and indirect medical costs, impact on work and school, treatment satisfaction, and emotional functioning (via the Hospital Anxiety and Depression Scale); and (ii) one-on-one interviews to collect detailed descriptive data and patient testimonials on the impact of HAE on patients' health-related quality of life. DISCUSSION: The present manuscript describes the development and plans for implementing a multi-country European study with the aim of characterizing the humanistic and economic burden of HAE from the patient perspective. This study will help raise awareness of HAE as a rare but debilitating condition with wide-ranging impacts.
Subject(s)
Angioedemas, Hereditary , Cost of Illness , Quality of Life , Adolescent , Adult , Angioedemas, Hereditary/complications , Angioedemas, Hereditary/epidemiology , Angioedemas, Hereditary/psychology , Child , Cross-Sectional Studies , Denmark/epidemiology , Female , Germany/epidemiology , Health Care Costs , Humans , Male , Middle Aged , Patient Satisfaction , Psychiatric Status Rating Scales , Retrospective Studies , Spain/epidemiology , Surveys and Questionnaires , Young AdultABSTRACT
Numerous physical and mental health concerns have been documented in the context of COVID-19, and it is likely that patients, survivors, frontline health care workers, and other affected individuals will present to psychiatry for treatment. Behavioral medicine, an interdisciplinary field that is defined by a behavioral and biomedical conceptualization of clinical care, offers an opportunity for collaboration with psychiatry and other health care providers to meet the myriad needs resulting from the pandemic. This review summarizes a conceptual framework of behavioral medicine and clinical health psychology, COVID-19-related quality of life concerns that may be applicable to behavioral medicine referrals, clinical assessment directions, and intervention opportunities. The review combines both findings specific to COVID-19 and general behavioral medicine principles with an overall goal of providing a basic introduction to behavioral medicine practice, applications, and opportunities for management of medical and psychological symptoms.
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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. In this design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about the trial. Participants in the intervention arm are informed and provide consent, but not the control group. Forty English-speaking SPIN Cohort participants from Canada, the USA, or the UK with low disease-management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale [SEMCD] score ≤ 7) who were interested in using an online self-management program were randomized (3:2 ratio) to be offered the SPIN-SELF Program or usual care for 3 months. Program usage was examined via automated usage logs. User satisfaction was assessed with semi-structured interviews. Trial personnel time requirements and implementation challenges were logged. RESULTS: Of 40 SPIN Cohort participants randomized, 26 were allocated to SPIN-SELF and 14 to usual care. Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly, except that two participants with SEMCD scores > 7 (scores of 7.2 and 7.3, respectively) were included, which was caused by a system programming error that rounded SEMCD scores. Of 26 SPIN Cohort participants offered the SPIN-SELF Program, only 9 (35%) consented to use the program. Usage logs showed that use of the SPIN-SELF Program was low: 2 of 9 users (22%) logged into the program only once (median = 3), and 4 of 9 (44%) accessed none or only 1 of the 9 program's modules (median = 2). CONCLUSIONS: The results of this study will lead to substantial changes for the planned full-scale RCT of the SPIN-SELF Program that we will incorporate into a planned additional feasibility trial with progression to a full-scale trial. These changes include transitioning to a conventional RCT design with pre-randomization consent and supplementing the online self-help with peer-facilitated videoconference-based groups to enhance engagement. TRIAL REGISTRATION: clinicaltrials.gov , NCT03914781 . Registered 16 April 2019.
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OBJECTIVE: Visible differences in appearance are associated with poor social and psychological outcomes. Effectiveness of non-surgical cosmetic and other camouflage interventions is poorly understood. The objective was to evaluate effects of cosmetic and other camouflage interventions on appearance-related outcomes, general psychological outcomes and adverse effects for adults with visible appearance differences. DESIGN: Systematic review. DATA SOURCES: MEDLINE (Ovid), EMBASE (Ovid), PsycINFO (Ovid) CINAHL and Cochrane Central databases searched from inception to 24 October 2020. Two reviewers independently reviewed titles and abstracts and full texts. ELIGIBILITY CRITERIA: Randomised controlled trials in any language on non-surgical cosmetic or other camouflage interventions that reported appearance-related outcomes, general psychological outcomes or adverse effects for adults with visible appearance differences. DATA EXTRACTION AND SYNTHESIS: Two reviewers independently extracted data, assessed intervention reporting using the Template for Intervention Description and Replication checklist, and assessed risk of bias using the Cochrane risk of bias tool. Outcomes included appearance-related outcomes, general psychological outcomes (eg, depression, anxiety) and adverse effects. RESULTS: One head-to-head trial and five trials with waiting list or routine care comparators were included. All had unclear or high risk of bias in at least five of seven domains. Effect sizes could not be determined for most outcomes due to poor reporting. Between-group statistically significant differences were not reported for any appearance-related outcomes and for only 5 of 25 (20%) other psychological outcomes. Given heterogeneity of populations and interventions, poor reporting and high risk of bias, quantitative synthesis was not possible. CONCLUSIONS: Conclusions about effectiveness of non-surgical cosmetic or other camouflage interventions could not be drawn. Well-designed and conducted trials are needed. Without such evidence, clinicians or other qualified individuals should engage with patients interested in cosmetic interventions in shared decision making, outlining potential benefits and harms, and the lack of evidence to inform decisions. PROSPERO REGISTRATION NUMBER: CRD42018103421.
Subject(s)
Anxiety , Adult , HumansABSTRACT
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. The SPIN-SELF Program has also been revised to include facilitator-led videoconference group sessions in addition to online material. We will test the group-based intervention delivery format, then evaluate the effect of the SPIN-SELF Program on disease management self-efficacy (primary) and patient activation, social appearance anxiety, and functional health outcomes (secondary). METHODS: This study is a feasibility trial with progression to full-scale RCT, pending meeting pre-defined criteria, of the SPIN-SELF Program. Participants will be recruited from the ongoing SPIN Cohort ( http://www.spinsclero.com/en/cohort ) and via social media and partner patient organizations. Eligible participants must have SSc and low to moderate disease management self-efficacy (Self-Efficacy for Managing Chronic Disease (SEMCD) Scale score ≤ 7.0). Participants will be randomized (1:1 allocation) to the group-based SPIN-SELF Program or usual care for 3 months. The primary outcome in the full-scale trial will be disease management self-efficacy based on SEMCD Scale scores at 3 months post-randomization. Secondary outcomes include SEMCD scores 6 months post-randomization plus patient activation, social appearance anxiety, and functional health outcomes at 3 and 6 months post-randomization. We will include 40 participants to assess feasibility. At the end of the feasibility portion, stoppage criteria will be used to determine if the trial procedures or SPIN-SELF Program need important modifications, thereby requiring a re-set for the full-scale trial. Otherwise, the full-scale RCT will proceed, and outcome data from the feasibility portion will be utilized in the full-scale trial. In the full-scale RCT, 524 participants will be recruited. DISCUSSION: The SPIN-SELF Program may improve disease management self-efficacy, patient activation, social appearance anxiety, and functional health outcomes in people with SSc. SPIN works with partner patient organizations around the world to disseminate its programs free-of-charge. TRIAL REGISTRATION: ClinicalTrials.gov NCT04246528 . Registered on 27 January 2020.
Subject(s)
COVID-19 , Scleroderma, Systemic , Self-Management , Feasibility Studies , Humans , Patient-Centered Care , Randomized Controlled Trials as TopicABSTRACT
OBJECTIVES: The Social Appearance Anxiety Scale (SAAS) is a 16-item questionnaire developed to evaluate fear of appearance-based evaluation by others. The primary objective of this research was to investigate the existence of differential item functioning (DIF) for the 16 SAAS items, comparing patients who completed the SAAS in English and French, either to confirm that scores are comparable or provide guidance on calculating comparable scores. A secondary research objective was to investigate the existence of DIF based on sex and disease status. A tertiary research objective was to assess DIF related to language, sex, and disease status on the recently developed SAAS-5. DESIGN: This was a cross-sectional analysis using baseline data from patients enrolled in the Scleroderma Patient-centred Intervention Network (SPIN). SETTING: SPIN patients included in the present study were enrolled at 43 centres in Canada, USA, UK, France and Australia, with questionnaires completed in April 2014 to July 2019. PARTICIPANTS: 1640 SPIN patients completed the SAAS in French (n=600) or English (n=1040). PRIMARY AND SECONDARY MEASURES: The SAAS was collected along with demographic and disease characteristics. RESULTS: Six items were identified with statistically significant language-based DIF, four with sex-based DIF and one with disease type-based DIF. However, factor scores before and after accounting for DIF were similar (Pearson correlation >0.99), and individual score differences were small. This was true for both the full and shortened versions of the SAAS. CONCLUSION: SAAS and SAAS-5 scores are comparable across language, sex, and disease-type, despite small differences in how patients respond to some items.
Subject(s)
Anxiety , Fear , Australia , Canada , Cohort Studies , Cross-Sectional Studies , France , Humans , Psychometrics , Surveys and QuestionnairesABSTRACT
Objective: The Brief Satisfaction With Appearance Scale measures two dimensions (Dissatisfaction with Appearance and Social Discomfort) of body image dissatisfaction in systemic sclerosis. This study examined the structural validity of the Brief Satisfaction With Appearance Scale across limited and diffuse systemic sclerosis subtypes, compared body image dissatisfaction by systemic sclerosis subtype, and identified the significant sociodemographic and medical correlates of body image dissatisfaction and whether they differed by subtype. Methods: Participants were 183 adults participating in the University of California, Los Angeles Scleroderma Quality of Life Study with limited cutaneous (n = 101) or diffuse cutaneous (n = 82) systemic sclerosis who received clinical examinations and completed questionnaires. Multiple-group confirmatory factor analysis, multivariate analysis of variance, and structural equation modeling were used. Results: The Brief Satisfaction With Appearance Scale's two-factor structure fit well for both subtypes. Patients with diffuse systemic sclerosis reported greater body image dissatisfaction on both factors than patients with limited disease. Greater Dissatisfaction with Appearance was associated with younger age and being unmarried for limited patients, and with younger age and increased finger/hand skin involvement for diffuse patients. Greater Social Discomfort was associated with younger age and being unmarried for both subtypes. Conclusion: The Brief Satisfaction With Appearance Scale scores can be meaningfully compared across limited and diffuse systemic sclerosis. Patients with diffuse disease reported more body image dissatisfaction than those with limited disease. Findings demonstrate that both medical and sociodemographic variables are associated with body image dissatisfaction in systemic sclerosis and can be used to identify which patients may be at increased risk for body image dissatisfaction.
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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. The Scleroderma Patient-centered Intervention Network (SPIN) developed a Web-based self-management program (SPIN self-management; SPIN-SELF) to increase self-efficacy for disease management and to improve HRQoL for patients with SSc. OBJECTIVE: The proposed study aims to assess the feasibility of conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF program by evaluating the trial implementation processes, required resources and management, scientific aspects, and participant acceptability and usage of the SPIN-SELF program. METHODS: The SPIN-SELF feasibility trial will be conducted via the SPIN Cohort. The SPIN Cohort was developed as a framework for embedded pragmatic trials using the cohort multiple RCT design. In total, 40 English-speaking SPIN Cohort participants with low disease management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale score ≤7), who have indicated interest in using a Web-based self-management program, will be randomized with a 3:2 ratio into the SPIN-SELF program or usual care for 3 months. Feasibility outcomes include trial implementation processes, required resources and management, scientific aspects, and patient acceptability and usage of the SPIN-SELF program. RESULTS: Enrollment of the 40 participants occurred between July 5, 2019, and July 27, 2019. By November 25, 2019, data collection of trial outcomes was completed. Data analysis is underway, and results are expected to be published in 2020. CONCLUSIONS: The SPIN-SELF program is a self-help tool that may improve disease-management self-efficacy and improve HRQoL in patients with SSc. The SPIN-SELF feasibility trial will ensure that trial methodology is robust, feasible, and consistent with trial participant expectations. The results will guide adjustments that need to be implemented before undertaking a full-scale RCT of the SPIN-SELF program. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/16799.
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INTRODUCTION: Systemic sclerosis (SSc, scleroderma) is a progressive, autoimmune, connective tissue disease of unknown etiology that can cause changes in appearance in socially important areas of the body (e.g. face and hands). Social concerns related to changes in appearance can contribute to anxiety specific to situations where one's appearance will be evaluated, or appearance anxiety. Appearance anxiety is a relevant but underexplored construct in SSc. Areas covered: We review the current knowledge on appearance anxiety in SSc, including assessment of the construct and interventions. Relevant references in the field were obtained through a literature search in MEDLINE/PubMed and PsycINFO for articles published through September 2018. Expert commentary: There is a dearth of research in the SSc literature examining the construct of appearance anxiety. A growing interest in appearance anxiety in SSc has led to several relevant measures being validated in this population, including the Social Appearance Anxiety Scale. Important areas for future research are the development of interventions to address appearance anxiety and the use of randomized controlled trials to evaluate these interventions.
Subject(s)
Phobia, Social/therapy , Scleroderma, Systemic/therapy , Humans , Phobia, Social/diagnosis , Quality of Life , Scleroderma, Systemic/diagnosis , Surveys and QuestionnairesABSTRACT
Background: Questions about the etiology of disease can concern patients living with any chronic disease and may impact disease-related adjustment. These causal attributions may be of particular interest when individuals are living with diseases for which etiologies have not been definitively identified, such as scleroderma. This study qualitatively explored patient attributions of causality for scleroderma. Methods: Patients with confirmed diagnoses of scleroderma responded to an open-ended prompt. The cross-sectional sample of scleroderma patients (N = 114) was recruited through registries maintained at the University of California, Los Angeles and University of California, San Diego Schools of Medicine and the Virginia Mason Medical Center. Content analysis was used to analyze the qualitative data and group the responses via an inductively derived codebook using the text analysis tool Dedoose Version 4.5. Results: Patients provided a variety of possible causes for scleroderma, which grouped into seven themes: (1) stress, (2) environment, (3) genetics, (4) medical conditions or surgeries, (5) diet, (6) medications or substance use, and (7) spirituality. Conclusion: Patients' causal attributions for scleroderma were varied, but many patients identified stress as a cause of scleroderma, often focusing on acute or chronic stressors that were present before disease onset. Identifying patient theories of causality for scleroderma can contribute to an increased understanding of disease-related behaviors and adjustment.
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Introduction: Individuals with visible differences due to medical conditions, such as systemic sclerosis (SSc; scleroderma), have reported difficulty navigating social situations because of issues such as staring, invasive questions, and rude comments. Fears or anxiety linked to situations in which a person interacts with others is known as social interaction anxiety. However, there exists no validated measurement tool to examine social interaction anxiety in rheumatologic conditions. Methods: The present study examines the reliability (internal consistency) and validity (structural and convergent) of the Social Interaction Anxiety Scale-6 (SIAS-6) in a sample of 802 individuals with SSc, and compares these psychometric properties across limited and diffuse subtypes of the disease. Multi-group confirmatory factor analysis was used to examine the factor structure of the SIAS-6 in patients with both limited and diffuse SSc. Results: A one-factor structure was found to fit well for individuals with SSc with both limited and diffuse disease. The measure demonstrated strong internal consistency reliability and convergent validity with relevant measures in expected magnitudes and directions. Conclusions: The SIAS-6 is a psychometrically robust measure that can confidently be used in SSc populations to examine social interaction anxiety. Moreover, scores can meaningfully be compared between patients with limited and diffuse disease.
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OBJECTIVE: Systemic sclerosis (SSc) is an autoimmune disease that can cause disfiguring changes in appearance. This study examined the structural validity, internal consistency reliability, convergent validity, and measurement equivalence of the Social Appearance Anxiety Scale (SAAS) across SSc disease subtypes. METHODS: Patients enrolled in the Scleroderma Patient-centered Intervention Network Cohort completed the SAAS and measures of appearance-related concerns and psychological distress. Confirmatory factor analysis (CFA) was used to examine the structural validity of the SAAS. Multiple-group CFA was used to determine whether SAAS scores can be compared across patients with limited and diffuse disease subtypes. Cronbach's alpha was used to examine internal consistency reliability. Correlations of SAAS scores with measures of body image dissatisfaction, fear of negative evaluation, social anxiety, and depression were used to examine convergent validity. SAAS scores were hypothesized to be positively associated with all convergent validity measures, with correlations significant and moderate to large in size. RESULTS: A total of 938 patients with SSc were included. CFA supported a 1-factor structure (Comparative Fit Index 0.92, Standardized Root Mean Residual 0.04, and Root Mean Square Error of Approximation 0.08), and multiple-group CFA indicated that the scalar invariance model best fit the data. Internal consistency reliability was good in the total sample (α = 0.96) and in disease subgroups. Overall, evidence of convergent validity was found with measures of body image dissatisfaction, fear of negative evaluation, social anxiety, and depression. CONCLUSION: The SAAS can be reliably and validly used to assess fear of appearance evaluation in patients with SSc, and SAAS scores can be meaningfully compared across disease subtypes.
Subject(s)
Anxiety/diagnosis , Scleroderma, Diffuse/psychology , Scleroderma, Limited/psychology , Adult , Aged , Anxiety/etiology , Cohort Studies , Cross-Sectional Studies , Factor Analysis, Statistical , Female , Humans , Male , Middle Aged , Reproducibility of ResultsABSTRACT
OBJECTIVE: Fear of negative evaluation is a common concern among individuals with visible differences but has received limited attention in systemic sclerosis (SSc), which can involve substantial changes to appearance. The Brief Fear of Negative Evaluation Scale (BFNE) was specifically designed to evaluate fear of negative evaluation. There are currently 3 versions of the BFNE with strong demonstrated measurement properties: two 8-item versions (BFNE-S, BFNE-8) and one 12-item version (BFNE-II). The present study evaluated these versions in SSc, and identified the most appropriate version for use among SSc patients. METHODS: Participants were 1,010 patients with SSc enrolled in the Scleroderma Patient-Centered Intervention Network cohort. Multiple group confirmatory factor analysis, Cronbach's alpha, and Pearson's product-moment correlations were used to evaluate structural validity, internal consistency reliability, and convergent and divergent validity, respectively. RESULTS: Confirmatory factor analysis demonstrated that 1-factor models fit acceptably well for the 12-item BFNE-II, the 8-item BFNE-S, and the 8-item BFNE-8. Additionally, all Cronbach's alphas demonstrated excellent internal consistency reliability (BFNE-II = 0.98, BFNE-S = 0.97, BFNE-8 = 0.96), and all versions had comparable associations with measures of social anxiety, body-related attitudes, depression, age, and education. CONCLUSION: Psychometric support was found for all 3 versions of the BFNE, although the longer 12-item BFNE-II did not improve measurement compared to the shorter 8-item versions (BFNE-S and BFNE-8). Of these 2, the BFNE-S has been more widely studied, with strong validity data in a greater number of populations. Therefore, the BFNE-S is recommended to assess fear of negative evaluation among patients with SSc.
Subject(s)
Anxiety/diagnosis , Scleroderma, Systemic/psychology , Adult , Aged , Cohort Studies , Female , Humans , Male , Middle Aged , Reproducibility of Results , Surveys and QuestionnairesABSTRACT
OBJECTIVE: Valid measures of appearance concern are needed in systemic sclerosis (SSc), a rare, disfiguring autoimmune disease. The Derriford Appearance Scale-24 (DAS-24) assesses appearance-related distress related to visible differences. There is uncertainty regarding its factor structure, possibly due to its scoring method. DESIGN: Cross-sectional survey. SETTING: Participants with SSc were recruited from 27 centres in Canada, the USA and the UK. Participants who self-identified as having visible differences were recruited from community and clinical settings in the UK. PARTICIPANTS: Two samples were analysed (n=950 participants with SSc; n=1265 participants with visible differences). PRIMARY AND SECONDARY OUTCOME MEASURES: The DAS-24 factor structure was evaluated using two scoring methods. Convergent validity was evaluated with measures of social interaction anxiety, depression, fear of negative evaluation, social discomfort and dissatisfaction with appearance. RESULTS: When items marked by respondents as 'not applicable' were scored as 0, per standard DAS-24 scoring, a one-factor model fit poorly; when treated as missing data, the one-factor model fit well. Convergent validity analyses revealed strong correlations that were similar across scoring methods. CONCLUSIONS: Treating 'not applicable' responses as missing improved the measurement model, but did not substantively influence practical inferences that can be drawn from DAS-24 scores. Indications of item redundancy and poorly performing items suggest that the DAS-24 could be improved and potentially shortened.
Subject(s)
Body Image , Physical Appearance, Body , Research Design/standards , Scleroderma, Systemic/psychology , Stress, Psychological/etiology , Surveys and Questionnaires/standards , Adolescent , Adult , Aged , Aged, 80 and over , Canada , Cohort Studies , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Psychometrics , Reproducibility of Results , United Kingdom , United States , Young AdultABSTRACT
OBJECTIVE: To evaluate the structural validity of the Rheumatology Attitudes Index (RAI), a widely used measure of rheumatic disease-related helplessness in patients with systemic sclerosis (SSc). METHODS: Patients with physician-confirmed SSc from the University of California, Los Angeles (UCLA) Scleroderma Quality of Life Study (n = 208) received clinical examinations and completed self-report questionnaires. The structural validity of the RAI was examined through confirmatory and exploratory factor analysis (CFA/EFA). RESULTS: A tenable factor structure was not identified through CFA or EFA. CONCLUSION: The present structural analysis did not support the use of the RAI with SSc patients.
Subject(s)
Attitude , Quality of Life/psychology , Scleroderma, Systemic/psychology , Adult , Aged , Female , Humans , Male , Middle Aged , Psychometrics , Reproducibility of Results , Self Report , Surveys and QuestionnairesABSTRACT
Body concealment is an important component of appearance distress for individuals with disfiguring conditions, including scleroderma. The objective was to replicate the validation study of the Body Concealment Scale for Scleroderma (BCSS) among 897 scleroderma patients. The factor structure of the BCSS was evaluated using confirmatory factor analysis and the Multiple-Indicator Multiple-Cause model examined differential item functioning of SWAP items for sex and age. Internal consistency reliability was assessed via Cronbach's alpha. Construct validity was assessed by comparing the BCSS with a measure of body image distress and measures of mental health and pain intensity. Results replicated the original validation study, where a bifactor model provided the best fit. The BCSS demonstrated strong internal consistency reliability and construct validity. Findings further support the BCSS as a valid measure of body concealment in scleroderma and provide new evidence that scores can be compared and combined across sexes and ages.