Vanessa L Malcarne

• PhD
• Professor (Full) at San Diego State University

Objective: This mixed methods study explores gender differences in, and reasons for, toothbrushing and flossing among Mexican-origin adults. Methods: Interviews and surveys about oral hygiene behaviors were collected from 72 adults (ages 21–40) living on the California–Mexico border. Interviews were audio-recorded, transcribed in their original lan...

Objective Craniofacial conditions (CFCs) can be associated with adverse effects on quality of life (QoL). However, few studies have examined perceived benefits related to CFCs. This study described perceived benefits in an international sample of children and adolescents with CFCs and their parents. Design Semistructured qualitative interviews wer...

Objectives The objectives of this study were to compare fatigue in a large multinational SSc cohort with general population data and identify associated sociodemographic, lifestyle and SSc disease factors. Methods Scleroderma Patient-centered Intervention Network Cohort participants completed the Patient-Reported Outcomes Measurement Information S...

Background Cancer predisposition syndromes (CPS) impact about 10% of patients with pediatric cancer. Genetic testing (CPS‐GT) has multiple benefits, but few studies have described parent and child knowledge and attitudes regarding CPS‐GT decision‐making. This study examined parent and patient CPS‐GT decision‐making knowledge and attitudes. Procedu...

Objective Systemic sclerosis (SSc) is a rare, chronic autoimmune disorder associated with disability, diminished physical function, fatigue, pain, and mental health concerns. We assessed minimal detectable changes (MDCs) of the Health Assessment Questionnaire–Disability Index (HAQ‐DI), Patient‐Reported Outcomes Measurement Information System‐29 Pro...

Introduction/objective We investigated (1) work status changes during COVID-19, (2) financial resource adequacy, (3) preferences for work requirements (e.g. remote, workplace, mixed) and (4) work requirements versus preferences, among people with systemic sclerosis. Methods This was a cross-sectional study of participants in the Scleroderma Patien...

Changes in appearance are a common and distressing aspect of scleroderma. Disfigurement in scleroderma often occurs in areas of the body that are both visible and socially relevant (e.g., face and hands), which can contribute to increased social anxiety and avoidance. A case study is provided to share examples of common concerns and challenges asso...

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 en...

Objective The objectives were to (1) compare satisfaction with social roles and activities in a large multinational systemic sclerosis (SSc) cohort to general population normative data and (2) identify sociodemographic, lifestyle and SSc disease factors associated with satisfaction with social roles and activities. Methods Participants in the Scle...

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...

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). Participants were adults from the...

Objective To evaluate the degree that the Cochin Hand Function Scale (CHFS) generates scores that are comparable across language, sex, and disease subtype. Methods We included participants enrolled in the Scleroderma Patient‐centered Intervention Network (SPIN) Cohort who completed the CHFS at their baseline assessment between April 2014 and Septe...

Study Objectives To test associations between neighborhood social, built, and ambient environment characteristics and multidimensional sleep health in Hispanic/Latino adults. Methods Data were from San Diego-based Hispanic/Latino adults mostly of Mexican heritage enrolled in the Hispanic Community Health Study/Study of Latinos (N=342). Home addres...

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 e...

Background: Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods:...

Objective Some individuals with systemic sclerosis (SSc) report positive mental health, despite severe disease manifestations, which may be associated with resilience, but no resilience measure has been validated in SSc. This study was undertaken to assess the validity, reliability, and differential item functioning (DIF) between English‐ and Frenc...

Background Patient-reported symptoms including pain, fatigue, sleep disturbance, anxiety, and depression are among the most common and burdensome symptoms in systemic sclerosis.[1–4] Most research on these symptoms in systemic sclerosis has examined only one symptom at a time, without evaluating the degree to which symptoms co-occur or how sociodem...

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 Desi...

Objective Loneliness has been associated with poorer health‐related quality of life but has not been studied in patients with systemic sclerosis (SSc). The current study was undertaken to examine and compare the psychometric properties of the English and French versions of the University of California, Los Angeles, Loneliness Scale‐6 (ULS‐6) in pat...

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 moderati...

Purpose Explore trial participants’ and research team members’ perceptions of the impact of the videoconference-based, supportive care program (SPIN-CHAT Program) during early COVID-19 for individuals with systemic sclerosis (SSc). Methods Data were collected cross-sectionally. A social constructivist paradigm was adopted, and one-on-one videoconf...

Background: Individuals with Huntington's disease (HD) experience motoric, cognitive, and psychiatric dysfunction. These difficulties can cause maladaptive behaviors that can be very distressing to family and caregivers. Capturing these behaviors in clinical and research settings is crucial. Objectives: To develop and evaluate the psychometric p...

Background Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. Functional impairment of hands is common. The Scleroderma Patient-centered Intervention Network (SPIN)-HAND trial compared effects of offering access to an online self-guided hand exercise program to usual care on hand function (primary) and functional...

Background: More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate...

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

Body image is a critical component of an individual’s sexual experiences. This makes it critical to identify demographic and sociocultural correlates of sexuality-related body image: the subjective feelings, cognitions, and evaluations related to one’s body in the context of sexual experience. We examined how sexuality-related body image differed b...

According to the tripartite influence model, body dissatisfaction is shaped by internalizing cultural appearance ideals stemming from appearance-related family, peer, and media pressures. This model was developed for women, but emerging evidence points to its relevance for men’s body image. This study advanced this budding research by (a) integrati...

Racial minority men and women face a wide variety of appearance-related pressures, including ones connected to their cultural backgrounds and phenotypic features associated with their identity. These body image concerns exist within a larger context, wherein racial minorities face pressures from multiple cultures or subcultures simultaneously to ac...

Objectification theory and the tripartite influence model provide useful frameworks for understanding the body image experiences of men and women. However, there is little systematic investigation of how sexual orientation moderates the links between these constructs and body image satisfaction. It has been hypothesized, for example, that the assoc...

Objectification theory proposes that widespread sexualization causes women to engage in surveillance of their appearance. We integrated this concept into a model with constructs from the tripartite influence model, which proposes that body dissatisfaction is a result of internalizing cultural notions of thin ideal beauty that stem from family, peer...

Objective: Systemic sclerosis (SSc) has significant psychosocial implications. We aimed to evaluate the proportion of participants in a large international SSc cohort who used mental health services in a 3-month period and to evaluate demographic, psychological, and disease-specific factors associated with use. Methods: Baseline data of particip...

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–cam...

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 tria...

We examined how gender, body mass, race, age, and sexual orientation were linked to appearance evaluation, overweight preoccupation, and body image-related quality of life among 11,620 adults recruited via Mechanical Turk. Men were less likely than women to report low appearance evaluation, high overweight preoccupation, negative effects of body im...

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: Hispani...

We examined how demographic factors (gender, sexual orientation, racial group, age, body mass) were. linked to measures of sociocultural appearance concerns derived from objectification theory and the tripartite influence model (McKinley & Hyde, 1996; Schaefer et al., 2015) among 11,620 adults. Men were less likely than women to report high body su...

Background Pain is an important and detrimental feature of systemic sclerosis but is often overlooked or deprioritised in research and clinical care. Raynaud's phenomenon, arthritis, and cutaneous ulcers are among the commonly reported disease manifestations of systemic sclerosis that could be associated with pain. We aimed to assess levels of pain...

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...

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 an...

Introduction No studies have examined factors associated with fear in any group of people vulnerable during COVID-19 due to pre-existing medical conditions. Objective To investigate factors associated with fear of consequences of COVID-19 among people living with a pre-existing medical condition, the autoimmune disease systemic sclerosis (SSc; scl...

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 dec...

Introduction No studies have reported mental health symptom comparisons prior to and during COVID-19 in vulnerable medical populations. Objective To compare anxiety and depression symptoms among people with a pre-existing medical condition and factors associated with changes. Methods Pre-COVID-19 Scleroderma Patient-centered Intervention Network...

Quality of life (QoL) has been defined in numerous ways; however, most definitions indicate that it encompasses an individual's perceptions of his or her physical, psychological, social, and other types of well‐being. Health‐related quality of life (HRQoL) is a multidimensional construct that is typically conceptualized as representing the health‐r...

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, e...

Background Systemic sclerosis has negative implications for quality of life, and coping is a mechanism by which individuals can adapt more successfully to illness. This study (1) identified coping profiles in patients with systemic sclerosis and (2) examined distress and disability correlates of the profiles. Methods A sample of 93 patients with c...

The English and Spanish versions of the Multidimensional Health Locus of Control scales have not been psychometrically evaluated for use with Hispanic Americans. Hispanic American adults (N = 436) completed the English (n = 210) or Spanish (n = 226) Multidimensional Health Locus of Control scales. A multiple-group confirmatory factor analysis did n...

Background: In an op-ed posted on the New York Times (NYT) website, Angelina Jolie disclosed that she carries the BRCA1 genetic mutation and received a preventive mastectomy. Studies have since demonstrated a positive impact of Ms. Jolie's disclosure on breast cancer-related health behaviors. This qualitative study used conventional content analysi...

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...

Objective Contagious disease outbreaks and related restrictions can lead to negative psychological outcomes, particularly in vulnerable populations at risk due to pre-existing medical conditions. No randomised controlled trials (RCTs) have tested interventions to reduce mental health consequences of contagious disease outbreaks. The primary objecti...

Purpose: The aims of this study were to adapt the multidimensional Reproductive Concerns After Cancer (RCAC) scale for use with young adult (YA) male cancer survivors, defined as current age 18-35 years and at least 1 year postdiagnosis, and to examine the factor structure, reliability, and validity of the newly adapted RCAC-Male (RCAC-M) scale. M...

The recently released National Institutes of Health Toolbox (NIHTB) batteries for neurological and behavioral function were designed to serve as standardized, common measures in clinical and epidemiological research. The current study aimed to examine constructs assessed by the self-report and parental proxy-report scales in the NIHTB Emotion Batte...

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 wer...

Introduction: Craniofacial conditions (CFCs) profoundly influence health-related quality of life (HRQoL). In children with CFCs, patient-reported outcome measures have become an integral adjunct to more objective surgical outcome measures. Patient-reported outcome measures are designed to assess HRQoL domains. Few studies have evaluated parent and...

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...

Background: Some people with rare diseases rely on peer-led support groups for disease-specific education and emotional and practical support. Systemic sclerosis (SSc), or scleroderma, is a rare autoimmune connective tissue disease. Many people with SSc cannot access support groups, and, when support groups exist, they may not be sustained due to...

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 (HR...

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 (...

Objectives The Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and...

Objectives The Scleroderma Patient-centered Intervention Network (SPIN) Cohort uses the cohort multiple randomised controlled trial design to embed trials of online self-care interventions for people living with systemic sclerosis (SSc; scleroderma). To offer interventions to patients interested in using them, participants complete signalling items...

The Sociocultural Attitudes Towards Appearance Questionnaire-4 Revised (SATAQ-4R) is a measure of internalization (or belief and acceptance) of muscular, thin/low body fat, and general attractiveness ideals; and of sociocultural pressures experienced from family, peers, media, and significant others to achieve the ideal body. The current study exam...

Purpose: Many people with scleroderma rely on peer-led support groups as a coping resource. Reasons for not attending support groups in scleroderma have been investigated only in North American participants. This study assesses reasons for nonattendance in European countries and compares results with previously published North American findings. Ma...

Peer-facilitated support groups are an important source for receiving disease-related information and support for people with systemic sclerosis (or scleroderma). A recent survey explored reasons for attending systemic sclerosis support groups in Europe and Australia and used exploratory factor analysis to group reasons for attendance into three ma...

Purpose 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 years) with a variety of c...

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...

Objectives The Social Appearance Anxiety Scale (SAAS) is a 16-item measure that assesses social anxiety in situations where appearance is evaluated. The objective was to use optimal test assembly (OTA) methods to develop and validate a short-form SAAS based on objective and reproducible criteria. Design This study was a cross-sectional analysis of...

Purpose: To evaluate the importance of different challenges experienced by informal caregivers to persons with systemic sclerosis (SSc) and identify priorities for support services that could be developed. Materials and Methods: Caregivers of people with SSc from three continents completed an online questionnaire to rate the importance of possible...

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...

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 wit...

Rationale: The aim of this study was to examine the direct associations of perceived personal and group discrimination with physical health-related quality of life (HRQoL) among Latinx adults. We also tested whether ethnic identity and depression symptoms sequentially mediate these associations. Method: This population-based study included 5313...

Background: Preschool children develop early literacy skills (ELS) needed for reading acquisition. Screening for delayed ELS could trigger interventions to prevent reading problems. Objective: To develop a brief screening test for ELS delays, the Early Literacy Skills Assessment Tool (ELSAT). Methods: This study included 4-year-old, typically...

Objectives: The objectives of this systematic review were to: (1) 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; (2) eval...

Colorectal Cancer Disparities in Japanese and Japanese Americans Background/Purpose There is a disparity between Japanese and Japanese Americans, where Japanese are at higher risk for colorectal cancer than Japanese Americans. The reasons for this disparity are unknown. The present literature review attempted to identify key risk factors that expl...

Purpose of review Pain is one of the most common quality of life concerns in systemic sclerosis (SSc). This review summarizes the literature on risk factors and potential clinical assessment and treatment strategies. Recent findings SSc pain is associated with, but not defined by, disease parameters and severity. The extant literature suggests tha...

Purpose: Our study aimed to identify caregiver characteristics (gender, age, occupational status, educational attainment, relation to care recipient), care recipient characteristics (age, disease subtype), and caregiving factors (hours of care, perceived caregiving burden) associated with symptoms of depression among informal caregivers of persons...

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 base...

The Pearlin Mastery (PM) Scale is frequently used in health research to assess individuals’ personal mastery or the extent to which they believe they are in control of their own lives. It has been adapted from English into multiple languages including Spanish. However, no studies have assessed the psychometric properties of Spanish translations of...

Purpose: Peer-facilitated support groups are an important resource for people with scleroderma, but little is known about challenges faced by support group facilitators. The objective was to identify training and support needs of scleroderma support group facilitators to inform the development of an educational training program. Methods: A 32-item...

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...

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...

Support groups are an important resource for people living with systemic sclerosis (SSc; scleroderma). Peer support group leaders play an important role in the success and sustainability of SSc support groups, but face challenges that include a lack of formal training. An SSc support group leader training program could improve leader self-efficacy...

Objectives The nominal group technique (NGT) allows stakeholders to directly generate items for needs assessment surveys. The objective was to demonstrate the use of NGT discussions to develop survey items on (1) challenges experienced by informal caregivers of people living with systemic sclerosis (SSc) and (2) preferences for support services. D...

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-sectiona...

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 cu...

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...