Rina S Fox
- Assistant Professor
- Member of the Graduate Faculty
- Assistant Professor, Psychiatry
Contact
- (520) 626-3071
- Nursing, Rm. 427
- Tucson, AZ 85721
- rsfox@arizona.edu
Degrees
- Ph.D. Clinical Psychology
- San Diego State University / University of California, San Diego Joint Doctoral Program in Clinical Psychology, San Diego, California, United States
- MPH Public Health (Epidemiology)
- San Diego State University Graduate School of Public Health, San Diego, California, United States
- B.A. Psychology; Spanish
- Tufts University, Medford, Massachusetts, United States
Licensure & Certification
- Licensed Clinical Psychologist, Arizona Board of Psychologist Examiners (2021)
Interests
No activities entered.
Courses
2024-25 Courses
-
Independent Study
PSIO 499 (Fall 2024) -
Research Preceptorship
NURS 791A (Fall 2024)
2023-24 Courses
-
Independent Study
PSIO 499 (Spring 2024) -
Research Preceptorship
NURS 791A (Spring 2024) -
Independent Study
PSIO 399 (Fall 2023) -
Mixed Methods for Health Sci
NURS 734 (Fall 2023)
2022-23 Courses
-
Independent Study
PSIO 399 (Spring 2023) -
Research Preceptorship
NURS 791A (Spring 2023) -
Independent Study
PSIO 399 (Fall 2022)
Scholarly Contributions
Journals/Publications
- Benzo, R. M., Moreno, P. I., Fox, R. S., Silvera, C. A., Walsh, E. A., Yanez, B., Balise, R. R., Oswald, L. B., & Penedo, F. J. (2023). Comorbidity burden and health-related quality of life in men with advanced prostate cancer. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 31(8), 496.More infoIdentifying clinically relevant comorbidities and their effect on health-related quality of life (HRQoL) outcomes among men with advanced prostate cancer (APC) can inform patient care and improve outcomes; however, this is poorly understood. The aim of this observational study was to examine the prevalence of comorbidities, and the relationship of comorbidity burden to HRQoL and other patient-reported outcomes (PROs) among men with APC.
- Fox, R. S., Armstrong, G. E., Gaumond, J. S., Vigoureux, T. F., Miller, C. H., Sanford, S. D., Salsman, J. M., Katsanis, E., Badger, T. A., Reed, D. R., Gonzalez, B. D., Jim, H. S., Warner, E. L., Victorson, D. E., & Oswald, L. B. (2023). Social isolation and social connectedness among young adult cancer survivors: A systematic review. Cancer, 129(19), 2946-2965.More infoSocial isolation and connectedness are social determinants of health that have demonstrated effects on cancer-related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18-39 years.
- Gorovoy, S. B., Campbell, R. L., Fox, R. S., & Grandner, M. A. (2023). App-Supported Sleep Coaching: Implications for Sleep Duration and Sleep Quality. Frontiers in sleep, 2.More infoThe present study evaluated whether completers of a 12-week app-based, personalized text supported sleep coaching program demonstrated improvements in sleep continuity, sleep duration, and reduced use of sleep aids.
- Kaiser, K., Fox, R. S., Perschon, C., Vera-Llonch, M., Alonso, J., Cubells, L., & Cella, D. (2023). Qualitative development of the PROMIS Profile v1.0-Familial Chylomicronemia Syndrome (FCS) 28. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 32(2), 605-614. doi:10.1007/s11136-022-03266-0More infoFamilial chylomicronemia syndrome (FCS) is a rare genetic disorder characterized by high triglyceride levels, significant disease burden, and negative impacts on health-related quality of life. This project aimed to create a PROMIS-based patient-reported outcome measure that represents valid and important concerns for patients with FCS.
- Peipert, J. D., Shaunfield, S., Kaiser, K., Moreno, P. I., Fox, R. S., Kircher, S., Mohindra, N., Ip, E., Zhao, F., Wagner, L., & Cella, D. (2023). Correction to: How do patients interpret and respond to a single‑item global indicator of cancer treatment tolerability?. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 31(8), 489.
- Walsh, E. A., Boland, C. L., Popok, P. J., Pedreira, P. B., Fox, R. S., Moreno, P. I., Yanez, B., & Penedo, F. J. (2023). Marital status and perceived stress in men with advanced prostate cancer: A randomized-controlled trial of cognitive behavioral stress management. Journal of psychosomatic research, 167, 111198.More infoRelationship status predicts numerous outcomes among medical populations. Few interventions evaluate the role of marital status on response to psychosocial treatment, and no such studies exist within advanced prostate cancer (APC). This study examined whether marital status modified the effect of a cognitive behavioral stress management (CBSM) intervention on perceived stress.
- Zhang, M., Ho, E., Nowinski, C. J., Fox, R. S., Ayturk, E., Karpouzian-Rogers, T., Novack, M., Dodge, H. H., Weintraub, S., & Gershon, R. (2023). The Paradox in Positive and Negative Aspects of Emotional Functioning Among Older Adults with Early Stages of Cognitive Impairment. Journal of aging and health, 8982643231199806.More infoEmotional functioning in older adults is influenced by normal aging and cognitive impairment, likely heterogeneous across positive versus negative aspects of emotional functioning. Little is known about positive emotional experiences at the early stages of cognitive impairment. We assessed different aspects of emotional functioning among 448 participants aged 65+ (Normal Control (NC) = 276, Mild Cognitive Impairment (MCI) = 103, and mild dementia of the Alzheimer type (mild DAT) = 69) and tested moderators. Compared to NC, older adults with MCI and mild DAT have maintained many positive aspects of emotional functioning, despite higher levels of negative affect, sadness, and loneliness. Among the oldest-old, the mild DAT group experienced higher fear and lower self-efficacy. Older adults at early stages of cognitive impairment can experience positive aspects of emotional functioning, such as positive affect, purpose, and life satisfaction, all of which are important buildable psychological resources for coping.
- Fox, R. S., Fowler, B., Carrera, J. B., Reichek, J., & Sanford, S. D. (2022). Increasing access to psychosocial care for adolescents and young adults with cancer by integrating targeted navigation services. Psycho-Oncology, 31(5), 856-859. doi:10.1002/pon.5916
- Fox, R. S., Fowler, B., Carrera, J. B., Reichek, J., & Sanford, S. D. (2022). Increasing access to psychosocial care for adolescents and young adults with cancer by integrating targeted navigation services. Psycho-oncology, 31(5), 856-859.
- Fox, R. S., Gaumond, J. S., Zee, P. C., Kaiser, K., Tanner, E. J., Ancoli-Israel, S., Siddique, J., Penedo, F. J., Wu, L. M., Reid, K. J., Parthasarathy, S., Badger, T. A., Rini, C., & Ong, J. C. (2022). Optimizing a Behavioral Sleep Intervention for Gynecologic Cancer Survivors: Study Design and Protocol. Frontiers in neuroscience, 16, 818718.More infoSleep difficulties, particularly symptoms of insomnia and circadian disruption, are among the primary complaints of gynecologic cancer survivors before, during, and after treatment. Moreover, difficulty sleeping has been linked to poorer health-related quality of life and elevated symptom burden in this population. Although leading behavioral sleep interventions have demonstrated efficacy among cancer survivors, up to 50% of survivors are non-adherent to these treatments, likely because these interventions require labor-intensive behavior and lifestyle changes. Therefore, there is a need for more effective and acceptable approaches to diminish sleep disturbance among cancer survivors. This manuscript describes the methodology of a two-part study guided by the Multiphase Optimization Strategy (MOST) framework to identify a streamlined behavioral sleep intervention for gynecologic cancer survivors. Three candidate intervention components previously shown to decrease sleep disturbance will be evaluated, including sleep restriction, stimulus control, and systematic bright light exposure. Participants will be adult women with a history of non-metastatic gynecologic cancer who have completed primary treatment and who report current poor sleep quality. Fifteen participants will be recruited for Part 1 of the study, which will utilize qualitative methods to identify barriers to and facilitators of intervention adherence. Results will inform changes to the delivery of the candidate intervention components to promote adherence in Part 2, where 80 participants will be recruited and randomized to one of eight conditions reflecting every possible combination of the three candidate intervention components in a full factorial design. Participants will complete assessments at baseline, post-intervention, and 3-months post-intervention. Part 2 results will identify the combination of candidate intervention components that yields the most efficacious yet efficient 6-week intervention for diminishing sleep disturbance. This is the first known study to apply the MOST framework to optimize a behavioral sleep intervention and will yield a resource-efficient treatment to diminish sleep disturbance, improve health-related quality of life, and decrease symptom burden among gynecologic cancer survivors. ClinicalTrials.gov Identifier: NCT05044975.
- Fox, R. S., Gonzalez, B. D., Jim, H. S., Zhou, E. S., Savard, J., Bandera, E. V., Reblin, M., Ketcher, D., Oswald, L. B., Chavez, M. N., & Geiss, C. (2022). “I Beat Cancer to Feel Sick:” Qualitative Experiences of Sleep Disturbance in Black Breast Cancer Survivors and Recommendations for Culturally Targeted Sleep Interventions. Annals of Behavioral Medicine, 56(11), 1110-1115. doi:10.1093/abm/kaac035More infoAbstract Background Sleep disturbance is common and distressing among cancer survivors. Black breast cancer survivors (BBCS) suffer disproportionately from sleep disturbance, yet there is limited research on how to address this issue. Purpose This study aimed to understand the multifaceted experiences of sleep disturbance among BBCS and how to culturally target a mobile health (mHealth) intervention to improve sleep outcomes in BBCS. Methods Semi-structured interviews were conducted in a purposive sample of 10 BBCS. Interviews were audio-recorded, transcribed, and coded for key barriers to sleep and potential solutions to incorporate into behavioral interventions using NVivo 12. Inductive applied thematic analysis techniques were employed to identify emergent themes. Results Ten BBCS (mean age = 54, SD = 10) described their experiences of sleep disturbance with themes including: (1) barriers to quality sleep (e.g., cancer worry, personal responsibilities), (2) psychosocial impacts of sleep disturbance (e.g., fatigue, distress), and (3) commonly used strategies to improve sleep. The second section discusses suggestions for developing mHealth interventions to improve sleep for BBCS including: (1) feedback on an existing mHealth intervention and (2) intervention topics suggested by BBCS. Conclusions Our findings highlight the challenges associated with sleep disturbance in BBCS. Participants report culturally targeted mHealth interventions are needed for BBCS who experience chronic sleep disturbance that affects their overall quality of life. These interventions should address coping with sleep-related issues relevant to many breast cancer survivors and BBCS (e.g., sexual intimacy, fear of cancer recurrence) and should incorporate intervention strategies acceptable to BBCS (e.g., prayer, meditation).
- Fox, R. S., Wu, L. M., Valdimarsdottir, H. B., Amidi, A., Reid, K. J., Ancoli-Israel, S., Bovbjerg, K., Walker, L., Matharu, A., Kaseda, E. T., Galvin, J. P., Adekola, K., Winkel, G., Penedo, F., & Redd, W. H. (2022). Examining the Efficacy of Bright Light Therapy on Cognitive Function in Hematopoietic Stem Cell Transplant Survivors. Journal of Biological Rhythms, 37(5), 471-483. doi:10.1177/07487304221107833
- Fox, R. S., Zhang, M., Amagai, S., Bassard, A., Dworak, E. M., Han, Y. C., Kassanits, J., Miller, C. H., Nowinski, C. J., Giella, A. K., Stoeger, J. N., Swantek, K., Hook, J. N., & Gershon, R. C. (2022). Uses of the NIH Toolbox® in Clinical Samples: A Scoping Review. Neurology. Clinical practice, 12(4), 307-319.More infoThe NIH Toolbox® for the Assessment of Neurologic and Behavioral Function is a compilation of computerized measures designed to assess sensory, motor, emotional, and cognitive functioning of individuals across the life span. The NIH Toolbox was initially developed for use with the general population and was not originally validated in clinical populations. The objective of this scoping review was to assess the extent to which the NIH Toolbox has been used with clinical populations.
- Geiss, C., Chavez, M. N., Oswald, L. B., Ketcher, D., Reblin, M., Bandera, E. V., Savard, J., Zhou, E. S., Fox, R. S., Jim, H. S., & Gonzalez, B. D. (2022). "I Beat Cancer to Feel Sick:" Qualitative Experiences of Sleep Disturbance in Black Breast Cancer Survivors and Recommendations for Culturally Targeted Sleep Interventions. Annals of behavioral medicine : a publication of the Society of Behavioral Medicine, 56(11), 1110-1115.More infoSleep disturbance is common and distressing among cancer survivors. Black breast cancer survivors (BBCS) suffer disproportionately from sleep disturbance, yet there is limited research on how to address this issue.
- Noriega Esquives, B., Lee, T. K., Moreno, P. I., Fox, R. S., Yanez, B., Miller, G. E., Estabrook, R., Begale, M. J., Flury, S. C., Perry, K., Kundu, S. D., & Penedo, F. J. (2022). Symptom burden profiles in men with advanced prostate cancer undergoing androgen deprivation therapy. Journal of behavioral medicine, 45(3), 366-377.More infoTo identify symptom burden profiles among men with advanced prostate cancer undergoing androgen-deprivation therapy and examine their association with baseline sociodemographic and medical characteristics and psychosocial outcomes over time. Latent profile analysis was employed to identify distinct groups based on the Expanded Prostate Index Composite and the McGill Pain Questionnaire at baseline. Psychosocial outcomes were assessed at baseline, 6- and 12-month follow-ups. Three profiles emerged: "high symptom burden," "high sexual bother," and "low symptom burden." Men with "high symptom burden" were younger and exhibited higher baseline levels of depression, stress, cancer-specific distress, and anxiety than men in the other two groups. However, men with "high symptom burden" also demonstrated improvement in these psychosocial outcomes over time. Men with advanced prostate cancer who experience multiple co-occurring symptoms demonstrate worse psychosocial adjustment. Patients with substantial symptom burden, and specifically young men, may benefit from prompt referral to supportive care services.
- Oswald, L. B., Fox, R. S., Murphy, K. M., Salsman, J. M., Sanford, S. D., McDade, T. W., & Victorson, D. E. (2022). Preliminary Effects of Mindfulness Training on Inflammatory Markers and Blood Pressure in Young Adult Survivors of Cancer: Secondary Analysis of a Pilot Randomized Controlled Trial. International journal of behavioral medicine, 29(5), 676-684.More infoThis was a secondary analysis of a pilot randomized controlled trial (RCT) of mindfulness-based stress reduction (MBSR) among young adult (YA) survivors of cancer, which showed preliminary evidence for improving psychosocial outcomes. Secondary outcomes assessed were the feasibility of collecting biological data from YAs and preliminary effects of MBSR on markers of inflammation and cardiovascular function.
- Oswald, L. B., Lyleroehr, M., Gudenkauf, L. M., Armstrong, G. E., Tometich, D. B., Sanford, S. D., Loecher, N., Geiss, C., Rodriguez, Y., Scheel, K. L., Nieves-Lopez, A., Jim, H. S., Gonzalez, B. D., Antoni, M. H., Penedo, F. J., Reed, D., Katsanis, E., Salsman, J. M., Victorson, D., & Fox, R. S. (2022). Development and initial testing of TOGETHER-YA: an eHealth-delivered and group-based psychosocial intervention for young adult cancer survivors. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 30(12), 10067-10076.More infoThis study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2).
- Peipert, J. D., Shaunfield, S., Kaiser, K., Moreno, P. I., Fox, R. S., Kircher, S., Mohindra, N., Ip, E., Zhao, F., Wagner, L., & Cella, D. (2022). How do patients interpret and respond to a single-item global indicator of cancer treatment tolerability?. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 31(1), 37.More infoThere is increasing interest in patient-reported measures of cancer treatment tolerability. A global measure of bother, the FACT GP5 item ("I am bothered by side effects of treatment") is potentially useful for regulatory, research, and clinical use. To understand this item's appropriateness for capturing treatment tolerability, we conducted cognitive interviews on this item with 3 samples of cancer patients.
- Walsh, E. A., Pedreira, P. B., Moreno, P. I., Popok, P. J., Fox, R. S., Yanez, B., Antoni, M. H., & Penedo, F. J. (2022). Pain, cancer-related distress, and physical and functional well-being among men with advanced prostate cancer. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 31(1), 28.More infoMen with advanced prostate cancer (APC) experience high levels of pain, which contribute to poor psychosocial and functional outcomes. Cancer-related distress explains the relationship between pain severity and interference, yet specificity of distress characteristics (e.g., hyperarousal, intrusive, or avoidant symptoms) in explaining associations between pain experiences and well-being has not been explored within APC. This study examined men with APC entering a clinical trial and tested associations of baseline pain, cancer-related distress, and physical and functional well-being.
- Wu, L. M., Valdimarsdottir, H. B., Amidi, A., Reid, K. J., Ancoli-Israel, S., Bovbjerg, K., Fox, R. S., Walker, L., Matharu, A., Kaseda, E. T., Galvin, J. P., Adekola, K., Winkel, G., Penedo, F., & Redd, W. H. (2022). Examining the Efficacy of Bright Light Therapy on Cognitive Function in Hematopoietic Stem Cell Transplant Survivors. Journal of biological rhythms, 37(5), 471-483.More infoPatients who have undergone hematopoietic stem cell transplant (HSCT) may experience cognitive impairment that can persist after treatment. Several studies have shown that bright light therapy may improve cognition, potentially due to its effects on the circadian system via brain regions that respond preferentially to light. In this double-blind randomized controlled trial, the efficacy of bright light therapy on cognition was examined in HSCT survivors. Forty-seven HSCT survivors at an urban hospital in the United States were screened for mild cognitive impairment, randomized to either bright white light (BWL) or comparison dim red light (DRL) conditions using a block randomization approach, and instructed to use their assigned light box every morning upon awakening for 30 min for 4 weeks. Assessments occurred at baseline, the end of the second week of the intervention, the end of the intervention, and at follow-up (8 weeks later). The primary outcome was objective cognitive function as measured by a global composite score on neuropsychological tests. Secondary outcomes included cognitive performance in individual domains, self-reported cognitive function, fatigue, sleep and sleep quality, and circadian rhythm robustness. Repeated-measures linear mixed models for both objective and self-reported cognitive function indicated significant main effects for time (s < 0.05) suggesting significant improvements in both conditions over time. Time by light condition interaction effects were not significant. Models focused on secondary outcomes yielded no significant effects. Both BWL and DRL groups demonstrated significant improvements in objective cognitive and self-reported cognitive function over time, but there was no hypothesized effect of BWL over DRL nor associations with circadian rhythm robustness. Therapeutic effects of both light conditions, practice effects, and/or placebo effects may account for the findings. ClinicalTrials.gov Identifier: NCT02677987 (9 February 2016).
- Fox, R. S., Baik, S. H., McGinty, H., Garcia, S. F., Reid, K. J., Bovbjerg, K., Fajardo, P., Wu, L. M., Shahabi, S., Ong, J. C., Zee, P. C., & Penedo, F. J. (2021). Feasibility and Preliminary Efficacy of a Bright Light Intervention in Ovarian and Endometrial Cancer Survivors. International journal of behavioral medicine, 28(1), 83-95.More infoCancer-related sleep disturbance is common and can adversely affect physical and mental health. Bright light (BL) therapy is a novel intervention that targets sleep by promoting circadian regulation. Emerging evidence suggests BL can improve sleep disturbance, symptom burden, and health-related quality of life in cancer and other populations; however, this research is limited. The present two-phase pilot study assessed the feasibility and preliminary intended effects of BL therapy on sleep in ovarian and endometrial cancer survivors, and explored biologic and chronobiologic factors that may underlie intervention effects.
- Fox, R. S., Manly, J. J., Slotkin, J., Devin Peipert, J., & Gershon, R. C. (2021). Reliability and Validity of the Spanish-Language Version of the NIH Toolbox. Assessment, 28(2), 457-471.More infoThe psychometric properties of the English-language NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox) have been examined in numerous populations. This study evaluated the reliability and validity of the Spanish-language NIH Toolbox. Participants were children aged 3 to 7 years and adults aged 18 to 85 years who took part in the NIH Toolbox norming study in Spanish. Results supported the internal consistency reliability of included measures. Test-retest reliability was strong for most tests, though it was weaker for the test of olfaction among children and the test of locomotion among adults. Spearman's correlations and general linear models showed Spanish tests were often associated with age, sex, and education. Convergent validity for the two language measures that underwent more intensive development, evaluated via Spearman's correlations with legacy measures, was strong. Results support using the Spanish-language NIH Toolbox to measure neurological and behavioral functioning among Spanish-speaking individuals in the United States.
- Fox, R. S., Oswald, L. B., Fowler, B., Carrera, J. B., Reichek, J., Victorson, D., & Sanford, S. D. (2021). Understanding and Enhancing Support Group Participation Among Adolescent and Young Adult Cancer Survivors: The Impact of Integrating Adolescent and Young Adult Cancer Navigation Services. Journal of adolescent and young adult oncology, 10(4), 488-492.More infoThis quality improvement initiative aimed to (1) explore the impact of adolescent and young adult (AYA)-specific navigation on attendance at a monthly peer support group for survivors aged 18-39 at a large comprehensive cancer center, and (2) better understanding attendees' preferences for group structure. Group attendance significantly increased following integration of AYA navigation. Using an online survey, we identified priority topics for discussion and desired changes to group organization, leading to modifications to group structure. Results highlight the value of having dedicated staff who proactively orient patients to resources tailored to their unique needs, and the importance of flexible program development that incorporates stakeholder input.
- Lee, Y., Fox, R. S., Kwakkenbos, L., Levis, B., Carrier, M., Welling, J., Sauve, M., Mouthon, L., Benedetti, A., Bartlett, S., Varga, J., & Thombs, B. (2021). Pain levels and associated factors in the Scleroderma Patient-centered Intervention Network (SPIN) cohort: a multicentre cross-sectional study. Lancet Rheumatology, 3(12), e844-e854. doi:10.1016/S2665-9913(21)00318-0
- Odukoya, O., Fox, R. S., Hayman, L. L., & Penedo, F. J. (2021). The International Society for Behavioral Medicine (ISBM) and the Society of Behavioral Medicine (SBM) advocate for the inclusion of behavioral scientists in the implementation of the Global Action Plan for the prevention of non-communicable diseases (NCDs) in low- and middle-income countries. Translational behavioral medicine, 11(6), 1286-1288.More infoNon-communicable diseases (NCDs) are the leading cause of death and disability in the world with the majority of deaths occurring in low- and middle-income countries (LMICs). The financial implications of disease and disability due to NCDs, combined with the costs of long-term management, are major causes of impoverishment and serve as barriers to socio-economic development. The transition from infectious diseases to NCDs as leading causes of mortality in LMICs is driven by several factors, primarily increasing globalization, urbanization, ageing of populations and economic development. Responding to these challenges will require local and comprehensive primary and secondary prevention efforts. The World Health Organization's Global Action Plan provides a road map and an array of policy options to achieve nine voluntary global targets by 2025. The primary responsibility of governments in responding to the challenge of NCDs includes international scientific cooperation to support national and local efforts. The implementation of such efforts to prioritize the prevention of NCDs will create an environment in which the rising trend of the NCD burden could be potentially halted and reversed. When developing NCD policies, stakeholders should consider evidence-based strategies which can be implemented by multidisciplinary teams that are led or have the participation of behavioral medicine scientists. Behavioral medicine strategies should be incorporated into the policy and intervention framework developed to target NCDs in LMICs.
- Ong, J. C., Fox, R. S., Brower, R. F., Mazurek, S., & Moore, C. (2021). How Does Narcolepsy Impact Health-Related Quality of Life? A Mixed-Methods Study. Behavioral sleep medicine, 19(2), 145-158.More info: The purpose of this study was to identify patient-centered issues affecting Health-Related Quality of Life (HRQoL) in people with narcolepsy (PWN) and to evaluate patient-reported outcome measures using a mixed-methods approach. : Twenty-nine adults (93% female, mean age = 31 years) with an established diagnosis of narcolepsy (Type I = 58.6%) completed focus group interviews using live videoconferencing. Additionally, participants completed the Patient-Reported Outcomes Measurement Information System (PROMIS) measures along with legacy measures commonly used in narcolepsy research (Epworth Sleepiness Scale, Patient Health Questionnaire, Short-Form 36). : Thematic analysis of qualitative data revealed that HRQoL was impacted by the constancy of sleepiness, unpredictability of narcolepsy symptoms, and negative public perception of narcolepsy. Challenges to accessibility and/or quality of care included dissatisfaction with non-sleep specialists' understanding of narcolepsy, the unpredictability of symptoms, and the cost of health care. There was enthusiasm for developing a psychosocial intervention to improve HRQoL using online access, but there were mixed opinions regarding the format, provider background, and content of the intervention. Elevations (T-score > 60) were found on PROMIS measures of depression, anxiety, fatigue, and sleep impairment. These patterns were consistent with the levels reported on legacy measures. PWN Type I reported lower levels of general health relative to Type II (
- Oswald, L. B., Victorson, D. E., & Fox, R. S. (2021). Young adult cancer survivors' preferences for supportive interventions. Psycho-oncology, 30(6), 982-985.
- Penedo, F. J., Fox, R. S., Walsh, E. A., Yanez, B., Miller, G. E., Oswald, L. B., Estabrook, R., Chatterton, R. T., Mohr, D. C., Begale, M. J., Flury, S. C., Perry, K., Kundu, S. D., & Moreno, P. I. (2021). Effects of web-based cognitive behavioral stress management and health promotion interventions on neuroendocrine and inflammatory markers in men with advanced prostate cancer: A randomized controlled trial. Brain, behavior, and immunity, 95, 168-177.More infoCognitive behavioral stress management (CBSM) improves quality of life and mitigates stress biology in patients with early-stage cancer, including men with localized prostate cancer. However, treatments for advanced prostate cancer like androgen deprivation therapy (ADT) can lead to significant symptom burden that may be further exacerbated by stress-induced inflammation and cortisol dysregulation. The aim of this study was to examine the effects of CBSM (versus an active health promotion control) on circulating inflammatory markers and cortisol in men with advanced prostate cancer.
- Fox, R. S., Ancoli-Israel, S., Roesch, S. C., Merz, E. L., Mills, S. D., Wells, K. J., Sadler, G. R., & Malcarne, V. L. (2020). Sleep disturbance and cancer-related fatigue symptom cluster in breast cancer patients undergoing chemotherapy. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 28(2), 845-855.More infoSleep 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.
- Fox, R. S., Mills, S. D., Gholizadeh, S., Merz, E. L., Roesch, S. C., Clements, P. J., Kafaja, S., Khanna, D., Furst, D. E., & Malcarne, V. L. (2020). Validity and correlates of the Brief Satisfaction With Appearance Scale for patients with limited and diffuse systemic sclerosis: Analysis from the University of California, Los Angeles Scleroderma Quality of Life Study. Journal of scleroderma and related disorders, 5(2), 143-151.More infoThe 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.
- Fox, R. S., Peipert, J. D., Vera-Llonch, M., Phillips, G., & Cella, D. (2020). PROMIS® and Neuro-QoL measures are valid measures of health-related quality of life among patients with familial chylomicronemia syndrome. Expert review of cardiovascular therapy, 18(4), 231-238.More info: FCS significantly affects health-related quality of life (HRQOL). Legacy patient-reported outcome measures are often not sensitive to FCS's impact. NIH PROMIS and Neuro-QoL measures may accurately capture HRQOL in FCS patients. This study assessed a broad range of PROMIS and Neuro-QoL measures covering physical, mental, and social HRQOL to determine their suitability for the FCS population.: Adult FCS patients in the United States (= 25) were recruited to an online survey study and completed several PROMIS short forms and Neuro-QoL computer adaptive tests.: Scores were more than 0.5 standard deviations () worse than the normative mean on 10 of 16 normed measures, and more than 0.75 s worse than the normative mean on two measures. Responses at the floor and ceiling were occasionally observed, marginal reliabilities were strong, and significant differences across performance status (s < 0.05) provided preliminary support for construct validity. The measures correlated with each other strongly and as expected.: Results support the ability of PROMIS and Neuro-QoL measures to detect HRQOL impairment among patients with FCS. PROMIS and Neuro-QoL measures captured the functional impact and symptom burden associated with FCS, and the broad range of symptom severity experienced by patients with FCS.
- Gershon, R. C., Fox, R. S., Manly, J. J., Mungas, D. M., Nowinski, C. J., Roney, E. M., & Slotkin, J. (2020). The NIH Toolbox: Overview of Development for Use with Hispanic Populations. Journal of the International Neuropsychological Society : JINS, 26(6), 567-575.More infoHispanics/Latinos are the largest and fastest-growing minority population in the United States. To facilitate appropriate outcome assessment of this expanding population, the NIH Toolbox for Assessment of Neurological and Behavioral Function® (NIH Toolbox®) was developed with particular attention paid to the cultural and linguistic needs of English- and Spanish-speaking Hispanics/Latinos.
- Mills, S. D., Fox, R. S., Bohan, S., Roesch, S. C., Sadler, G. R., & Malcarne, V. L. (2020). Psychosocial and neighborhood correlates of health-related quality of life: A multi-level study among Hispanic adults. Cultural diversity & ethnic minority psychology, 26(1), 1-10.More infoImprovement in health-related quality of life (HRQoL) is a public health goal of . 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.
- Penedo, F. J., Fox, R. S., Oswald, L. B., Moreno, P. I., Boland, C. L., Estabrook, R., McGinty, H. L., Mohr, D. C., Begale, M. J., Dahn, J. R., Flury, S. C., Perry, K. T., Kundu, S. D., & Yanez, B. (2020). Technology-Based Psychosocial Intervention to Improve Quality of Life and Reduce Symptom Burden in Men with Advanced Prostate Cancer: Results from a Randomized Controlled Trial. International journal of behavioral medicine, 27(5), 490-505.More infoMen with advanced prostate cancer (APC) face multiple challenges including poor prognosis, poor health-related quality of life (HRQOL), and elevated symptom burden. This study sought to establish the efficacy of a tablet-delivered, group-based psychosocial intervention for improving HRQOL and reducing symptom burden in men with APC. We hypothesized that men randomized to cognitive-behavioral stress management (CBSM) would report improved HRQOL and reduced symptom burden relative to men randomized to an active control health promotion (HP) condition. Condition effects on intervention targets and moderators of these effects were explored.
- Baik, S. H., Fox, R. S., Mills, S. D., Roesch, S. C., Sadler, G. R., Klonoff, E. A., & Malcarne, V. L. (2019). Reliability and validity of the Perceived Stress Scale-10 in Hispanic Americans with English or Spanish language preference. Journal of health psychology, 24(5), 628-639.More infoThis study examined the psychometric properties of the Perceived Stress Scale-10 among 436 community-dwelling Hispanic Americans with English or Spanish language preference. Multigroup confirmatory factor analysis examined the factorial invariance of the Perceived Stress Scale-10 across language groups. Results supported a two-factor model (negative, positive) with equivalent response patterns and item intercepts but different factor covariances across languages. Internal consistency reliability of the Perceived Stress Scale-10 total and subscale scores was good in both language groups. Convergent validity was supported by expected relationships of Perceived Stress Scale-10 scores to measures of anxiety and depression. These results support the use of the Perceived Stress Scale-10 among Hispanic Americans.
- Fox, R. S., Carnethon, M. R., Gallo, L. C., Wiley, J. F., Isasi, C. R., Daviglus, M. L., Cai, J., Davis, S. M., Giachello, A. L., Gonzalez, P., McCurley, J. L., Schneiderman, N., & Penedo, F. J. (2019). Perceived Discrimination and Cardiometabolic Risk Among US Hispanics/Latinos in the HCHS/SOL Sociocultural Ancillary Study. International journal of behavioral medicine, 26(4), 331-342.More infoMetabolic syndrome (MetS) is a group of cardiovascular risk factors including elevated blood pressure, elevated triglycerides, decreased high-density lipoprotein cholesterol, impaired fasting glucose, and abdominal obesity, which disproportionately affects Hispanics/Latinos. The present study examined associations between perceived discrimination and MetS in Hispanic/Latino adults from various background groups (i.e., Dominican, Central American, Cuban, Mexican, Puerto Rican, South American).
- Fox, R. S., Moreno, P. I., Yanez, B., Estabrook, R., Thomas, J., Bouchard, L. C., McGinty, H. L., Mohr, D. C., Begale, M. J., Flury, S. C., Perry, K. T., Kundu, S. D., & Penedo, F. J. (2019). Integrating PROMIS® computerized adaptive tests into a web-based intervention for prostate cancer. Health psychology : official journal of the Division of Health Psychology, American Psychological Association, 38(5), 403-409.More infoThis study outlined the implementation and feasibility of delivering PROMIS® computer adaptive tests (CATs) using a web-based method to evaluate the impact of a technological adaptation of Cognitive-Behavioral Stress Management (CBSM) on the psychosocial functioning of men with advanced prostate cancer (APC) undergoing hormone therapy.
- Moreno, P. I., Ramirez, A. G., San Miguel-Majors, S. L., Castillo, L., Fox, R. S., Gallion, K. J., Munoz, E., Estabrook, R., Perez, A., Lad, T., Hollowell, C., & Penedo, F. J. (2019). Unmet supportive care needs in Hispanic/Latino cancer survivors: prevalence and associations with patient-provider communication, satisfaction with cancer care, and symptom burden. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 27(4), 1383-1394.More infoThe aim of this study was to elucidate the prevalence of unmet supportive care needs in Hispanic/Latino cancer survivors and examine the association between unmet needs and patient-provider communication, satisfaction with cancer care, and cancer-specific symptom burden.
- Fox, R. S., Kwakkenbos, L., Carrier, M. E., Mills, S. D., Gholizadeh, S., Jewett, L. R., Roesch, S. C., Merz, E. L., Assassi, S., Furst, D. E., Gottesman, K., Mayes, M. D., Thombs, B. D., Malcarne, V. L., & , S. I. (2018). Reliability and Validity of Three Versions of the Brief Fear of Negative Evaluation Scale in Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study. Arthritis care & research, 70(11), 1646-1652.More infoFear 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.
- Fox, R. S., Lillis, T. A., Gerhart, J., Hoerger, M., & Duberstein, P. (2018). Multiple Group Confirmatory Factor Analysis of the DASS-21 Depression and Anxiety Scales: How Do They Perform in a Cancer Sample?. Psychological reports, 121(3), 548-565.More infoThe DASS-21 is a public domain instrument that is commonly used to evaluate depression and anxiety in psychiatric and community populations; however, the factor structure of the measure has not previously been examined in oncologic settings. Given that the psychometric properties of measures of distress may be compromised in the context of symptoms related to cancer and its treatment, the present study evaluated the psychometric properties of the DASS-21 Depression and Anxiety scales in cancer patients ( n = 376) as compared to noncancer control participants ( n = 207). Cancer patients ranged in age from 21 to 84 years (mean = 58.3, standard deviation = 10.4) and noncancer control participants ranged in age from 18 to 81 years (mean = 45.0, standard deviation = 11.7). Multiple group confirmatory factor analysis supported the structural invariance of the DASS-21 Depression and Anxiety scales across groups; the factor variance/covariance invariance model was the best fit to the data. Cronbach's coefficient alpha values demonstrated acceptable internal consistency reliability across the total sample as well as within subgroups of cancer patients and noncancer control participants. Expected relationships of DASS-21 Depression and Anxiety scale scores to measures of suicidal ideation, quality of life, self-rated health, and depressed mood supported construct validity. These results support the psychometric properties of the DASS-21 Depression and Anxiety scales when measuring psychological distress in cancer patients.
- Fox, R. S., Mills, S. D., Roesch, S. C., Sotres-Alvarez, D., Gonzalez, P., Bekteshi, V., Cai, J., Lounsbury, D. W., Talavera, G. A., Penedo, F. J., & Malcarne, V. L. (2018). Perceptions of Cancer Risk/Efficacy and Cancer-Related Risk Behaviors: Results From the HCHS/SOL Sociocultural Ancillary Study. Health education & behavior : the official publication of the Society for Public Health Education, 45(5), 790-799.More infoThis study evaluated the associations among perceived risk, perceived efficacy, and engagement in six cancer-related risk behaviors in a population-based Hispanic/Latino sample. Interviews were conducted with 5,313 Hispanic/Latino adults as part of the Hispanic Community Health Study/Study of Latinos (HCHS/SOL) Sociocultural Ancillary Study. Participants were recruited from the study's four field centers (Bronx, NY; Chicago, IL; Miami, FL; San Diego, CA) between February 2010 and June 2011. Perceived risk and perceived efficacy were assessed with questions drawn from the Health Interview National Trends Survey. More than half of the sample endorsed perceived risk of cancer associated with the six evaluated behaviors, as well as general perceived efficacy for preventing cancer. Adjusted logistic regression analyses demonstrated significant differences across Hispanic/Latino background groups for perceived risk associated with high consumption of alcohol and saturated fat, low consumption of fruits and vegetables, and insufficient exercise but not with smoking or low consumption of fiber. Differences were also found for the belief, "It seems like everything causes cancer" but not for other perceived efficacy items. Perceived cancer risk and perceived efficacy for preventing cancer were neither independently nor interactively associated with engagement in cancer-related risk behaviors after controlling for sociodemographic covariates. Results suggest that perceptions of risk and efficacy with regard to cancer vary across Hispanic/Latino background groups, and therefore background group differences should be considered in prevention efforts. Perceived risk and perceived efficacy were not related to cancer-related risk behaviors among Hispanics/Latinos. Further work is needed to evaluate determinants of cancer-related risk in this population.
- Gholizadeh, S., Kwakkenbos, L., Carrier, M. E., Mills, S. D., Fox, R. S., Jewett, L. R., Gottesman, K., Roesch, S., Thombs, B. D., Malcarne, V. L., & , S. I. (2018). Validation of the Social Interaction Anxiety Scale in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort study. Journal of scleroderma and related disorders, 3(1), 98-105.More infoIndividuals 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.
- Merz, E. L., Kwakkenbos, L., Carrier, M. E., Gholizadeh, S., Mills, S. D., Fox, R. S., Jewett, L. R., Williamson, H., Harcourt, D., Assassi, S., Furst, D. E., Gottesman, K., Mayes, M. D., Moss, T. P., Thombs, B. D., Malcarne, V. L., & , S. I. (2018). Factor structure and convergent validity of the Derriford Appearance Scale-24 using standard scoring versus treating 'not applicable' responses as missing data: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study. BMJ open, 8(3), e018641.More infoValid 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.
- Mills, S. D., Kwakkenbos, L., Carrier, M. E., Gholizadeh, S., Fox, R. S., Jewett, L. R., Gottesman, K., Roesch, S. C., Thombs, B. D., Malcarne, V. L., & , S. P. (2018). Validation of the Social Appearance Anxiety Scale in Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study. Arthritis care & research, 70(10), 1557-1562.More infoSystemic 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.
- Moreno, P. I., Ramirez, A. G., San Miguel-Majors, S. L., Fox, R. S., Castillo, L., Gallion, K. J., Munoz, E., Estabrook, R., Perez, A., Lad, T., Hollowell, C., & Penedo, F. J. (2018). Satisfaction with cancer care, self-efficacy, and health-related quality of life in Latino cancer survivors. Cancer, 124(8), 1770-1779.More infoThe objective of the current study was to examine how modifiable factors such as satisfaction with cancer care and self-efficacy impact health-related quality of life (HRQOL) among Latino cancer survivors.
- Ong, J. C., Taylor, H. L., Park, M., Burgess, H. J., Fox, R. S., Snyder, S., Rains, J. C., Espie, C. A., & Wyatt, J. K. (2018). Can Circadian Dysregulation Exacerbate Migraines?. Headache, 58(7), 1040-1051.More infoThis observational pilot study examined objective circadian phase and sleep timing in chronic migraine (CM) and healthy controls (HC) and the impact of circadian factors on migraine frequency and severity.
- Gholizadeh, S., Mills, S. D., Fox, R. S., Merz, E. L., Roesch, S. C., Clements, P. J., Kafaja, S., Furst, D. E., Khanna, D., & Malcarne, V. L. (2017). Structural Validity of the Rheumatology Attitudes Index in Systemic Sclerosis: Analysis from the UCLA Scleroderma Quality of Life Study. The Journal of rheumatology, 44(6), 795-798.More infoTo 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).
- Jewett, L. R., Kwakkenbos, L., Carrier, M. E., Malcarne, V. L., Harcourt, D., Rumsey, N., Mayes, M. D., Assassi, S., Körner, A., Fox, R. S., Gholizadeh, S., Mills, S. D., Fortune, C., Portales, A., Thombs, B. D., & , S. I. (2017). Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Body image, 20, 99-106.More infoBody 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.
- Mills, S. D., Fox, R., Gholizadeh, S., Klonoff, E. A., & Malcarne, V. L. (2017). Acculturation and health behaviors among African Americans: A systematic review. Journal of Cross-Cultural Psychology, 48(7), 1073-1097.
- Pan, T. M., Mills, S. D., Fox, R. S., Baik, S. H., Harry, K. M., Roesch, S. C., Sadler, G. R., & Malcarne, V. L. (2017). The Psychometric Properties of English and Spanish Versions of the Life Orientation Test-Revised in Hispanic Americans. Journal of psychopathology and behavioral assessment, 39(4), 657-668.More infoThe Life Orientation Test-Revised (LOT-R) is a widely used measure of optimism and pessimism, with three positively worded and three negatively worded content items. This study examined the structural validity and invariance, internal consistency reliability, and convergent and divergent validity of the English and Spanish versions of the LOT-R among Hispanic Americans. A community sample of Hispanic Americans ( = 422) completed self-report measures, including the LOT-R, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7, in their preferred language of English or Spanish. Based on the literature, four structural models were tested: , , , and . Baseline support for both of the English and Spanish versions was not achieved for any model; in all models, the negatively worded items in Spanish had non-significant factor loadings. Therefore, the positively worded three-item optimism subscale of the LOT-R was examined separately and fit the data, with factor loadings equivalent across language-preference groups. Coefficient alphas for the optimism subscale were consistent across both language-preference groups (αs = .61 [English] and .66 [Spanish]). In contrast, the six-item total score and three-item pessimism subscale demonstrated extremely low or inconsistent alphas. Convergent and divergent validity were established for the optimism subscale in both languages. In sum, the optimism subscale of the LOT-R demonstrated minimally acceptable to good psychometric properties across English and Spanish language-preference groups. However, neither the total score nor the pessimism subscale showed adequate psychometric properties for Spanish-speaking Hispanic Americans, likely due to translation and cultural adaptation issues, and thus are not supported for use with this population.
- Champagne, B. R., Fox, R. S., Mills, S. D., Sadler, G. R., & Malcarne, V. L. (2016). Multidimensional profiles of health locus of control in Hispanic Americans. Journal of health psychology, 21(10), 2376-85.More infoLatent profile analysis identified health locus of control profiles among 436 Hispanic Americans who completed the Multidimensional Health Locus of Control scales. Results revealed four profiles: Internally Oriented-Weak, -Moderate, -Strong, and Externally Oriented. The profile groups were compared on sociocultural and demographic characteristics, health beliefs and behaviors, and physical and mental health outcomes. The Internally Oriented-Strong group had less cancer fatalism, religiosity, and equity health attributions, and more alcohol consumption than the other three groups; the Externally Oriented group had stronger equity health attributions and less alcohol consumption. Deriving multidimensional health locus of control profiles through latent profile analysis allows examination of the relationships of health locus of control subtypes to health variables.
- Jewett, L. R., Kwakkenbos, L., Carrier, M. E., Malcarne, V. L., Bartlett, S. J., Furst, D. E., Gottesman, K., Mayes, M. D., Assassi, S., Harcourt, D., Williamson, H., Johnson, S. R., Körner, A., Steen, V., Fox, R. S., Gholizadeh, S., Mills, S. D., Molnar, J. C., Rice, D. B., & Thombs, B. D. (2016). Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. Clinical and experimental rheumatology, 34 Suppl 100(5), 92-99.More infoAppearance 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.
- Nuyen, B. A., Fox, R. S., Malcarne, V. L., Wachsman, S. I., & Sadler, G. R. (2016). Excessive Daytime Sleepiness as an Indicator of Depression in Hispanic Americans. Hispanic health care international : the official journal of the National Association of Hispanic Nurses, 14(3), 116-123.More infoExcessive daytime sleepiness (EDS) has been shown to be associated with depression; however, this relationship has not been confirmed among Hispanic Americans.
- Kwakkenbos, L., Delisle, V. C., Fox, R. S., Gholizadeh, S., Jewett, L. R., Levis, B., Milette, K., Mills, S. D., Malcarne, V. L., & Thombs, B. D. (2015). Psychosocial Aspects of Scleroderma. Rheumatic diseases clinics of North America, 41(3), 519-28.More infoPatients with systemic sclerosis (SSc; also called scleroderma) have to cope with not only the physical impacts of the disease but also the emotional and social consequences of living with the condition. Because there is no cure for SSc, improving quality of life is a primary focus of treatment and an important clinical challenge. This article summarizes significant problems faced by patients with SSc, including depression, anxiety, fatigue, sleep disruption, pain, pruritus, body image dissatisfaction, and sexual dysfunction, and describes options to help patients cope with the consequences of the disease.
- Mills, S. D., Fox, R. S., & Malcarne, V. L. (2015). Body Image in Children with Morphea: A Systematic Review. Pediatric dermatology, 32(4), e188-90.More infoThis systematic review was conducted to evaluate the present state of body image research in children with morphea and the extent of body image distress in this population. Only five studies met inclusion criteria. Disease-related skin changes in children with morphea typically were associated with, at most, mild levels of body image distress.
- Mills, S. D., Fox, R. S., Merz, E. L., Clements, P. J., Kafaja, S., Malcarne, V. L., Furst, D. E., & Khanna, D. (2015). Evaluation of the Satisfaction with Appearance Scale and Its Short Form in Systemic Sclerosis: Analysis from the UCLA Scleroderma Quality of Life Study. The Journal of rheumatology, 42(9), 1624-30.More infoChanges in appearance are common in patients with systemic sclerosis (SSc) and can significantly affect well-being. The Satisfaction with Appearance Scale (SWAP) measures body image dissatisfaction in persons with visible disfigurement; the Brief-Satisfaction with Appearance Scale (Brief-SWAP) is its short form. The present study evaluated the reliability and validity of SWAP and Brief-SWAP scores in SSc.
- Mills, S. D., Fox, R. S., Pan, T. M., Malcarne, V. L., Roesch, S. C., & Sadler, G. R. (2015). Psychometric Evaluation of the Patient Health Questionnaire-4 in Hispanic Americans. Hispanic journal of behavioral sciences, 37(4), 560-571.More infoThe present study evaluated the psychometric properties of the Patient Health Questionnaire-4 (PHQ-4), a screener of psychological distress, in English- and Spanish-speaking Hispanic Americans. Hispanic American adults ( = 436) completed the PHQ-4, which yields two subscales (anxiety and depression) that can be summed to create a total score. Multiple-group confirmatory factor analysis was used to evaluate structural validity. The two-factor structure was the best fit to the data for both English- and Spanish-speaking Hispanic Americans and items loaded equivalently across groups, demonstrating measurement invariance. Internal consistency reliability was good as measured by coefficient alpha. Construct validity was evidenced by significant expected relationships with perceived stress. These findings provide support for the reliability and validity of the PHQ-4 as a brief measure of psychological distress for English- or Spanish-speaking Hispanic Americans.
- Fox, R. S., Malcarne, V. L., Roesch, S. C., & Sadler, G. R. (2014). The Cultural Health Attributions Questionnaire (CHAQ): reliability, validity, and refinement. Cultural diversity & ethnic minority psychology, 20(2), 283-92.More infoThis study describes the reliability and validity of scores on the Cultural Health Attributions Questionnaire (CHAQ), and proposes a refined short form. Murguía, Zea, Reisen, and Peterson (2000) developed the 24-item CHAQ to assess health beliefs among Latinos/Hispanics. The CHAQ incorporates two 12-item subscales: Equity Attributions (EA) and Behavioral-Environmental Attributions (BEA). Although the CHAQ has been published in Spanish and English, psychometric properties have only been evaluated for scores on the Spanish-language version. Participants in the present study were 436 Latinos/Hispanics, half of whom completed the CHAQ in Spanish, and half in English. Multigroup confirmatory factor analysis indicated that the proposed two-factor structure did not fit the data for either language. Subsequent exploratory factor analyses revealed different best-fitting models for the two languages. A common two-factor (EA/BEA) structure was derived from items that loaded univocally in both languages. Additional items were removed to produce a 10-item revised version (CHAQ-R). The two factors were negatively correlated and had good internal consistency reliability. Expected relationships of CHAQ-R scores to acculturation and health locus of control strongly supported convergent validity. The relationship of EA to ethnomedical services usage marginally supported criterion validity. Overall, the results support the reliability and validity of CHAQ-R scores to measure cultural health attributions in Latinos/Hispanics, but further psychometric evaluation is needed.
- Merz, E. L., Fox, R. S., & Malcarne, V. L. (2014). Expressive writing interventions in cancer patients: a systematic review. Health psychology review, 8(3), 339-61.More infoDecades of research have suggested that expressive writing produces physical and psychological benefits in controlled laboratory experiments among healthy college students. This work has been extended to clinical and medical populations, including cancer patients. Although expressive writing could be a promising and inexpensive intervention for this population, the effects have not been systematically examined in oncology samples. A systematic review using PRISMA guidelines was conducted for experimental trials of cancer patients who participated in an expressive writing intervention. PsycINFO and PubMed/Medline were searched for peer-reviewed studies. Thirteen articles met the inclusion/exclusion criteria. Although the majority of the intervention effects were null, there were several main effects for expressive writing on sleep, pain, and general physical and psychological symptoms. Several moderators were identified, suggesting that expressive writing may be more or less beneficial based on individual characteristics such as social constraints. The reviewed studies were limited due to representativeness of the samples, performance, detection and patient-reported outcomes biases, and heterogeneity of the intervention protocol and writing prompts. Future studies with rigorous designs are needed to determine whether expressive writing is therapeutically effective in cancer patients.
- Mills, S. D., Fox, R. S., Malcarne, V. L., Roesch, S. C., Champagne, B. R., & Sadler, G. R. (2014). The psychometric properties of the generalized anxiety disorder-7 scale in Hispanic Americans with English or Spanish language preference. Cultural diversity & ethnic minority psychology, 20(3), 463-468.More infoThe Generalized Anxiety Disorder-7 scale (GAD-7) is a self-report questionnaire that is widely used to screen for anxiety. The GAD-7 has been translated into numerous languages, including Spanish. Previous studies evaluating the structural validity of the English and Spanish versions indicate a unidimensional factor structure in both languages. However, the psychometric properties of the Spanish language version have yet to be evaluated in samples outside of Spain, and the measure has not been tested for use among Hispanic Americans. This study evaluated the reliability, structural validity, and convergent validity of the English and Spanish language versions of the GAD-7 for Hispanic Americans in the United States. A community sample of 436 Hispanic Americans with an English (n = 210) or Spanish (n = 226) language preference completed the GAD-7. Multiple-group confirmatory factor analysis (CFA) was used to examine the goodness-of-fit of the unidimensional factor structure of the GAD-7 across language-preference groups. Results from the multiple-group CFA indicated a similar unidimensional factor structure with equivalent response patterns and item intercepts, but different variances, across language-preference groups. Internal consistency was good for both English and Spanish language-preference groups. The GAD-7 also evidenced good convergent validity as demonstrated by significant correlations in expected directions with the Perceived Stress Scale, the Patient Health Questionnaire-9, and the Physical Health domain of the World Health Organization Quality of Life-BREF assessment. The unidimensional GAD-7 is suitable for use among Hispanic Americans with an English or Spanish language preference.
- Mills, S. D., Malcarne, V. L., Fox, R. S., & Sadler, G. R. (2014). Psychometric Evaluation of the Brief Acculturation Scale for Hispanics. Hispanic journal of behavioral sciences, 36(2), 164-174.More infoThis study examined the psychometric properties of the Brief Acculturation Scale for Hispanics (BASH), a four-item, language-based measure of acculturation. Participants in the study were 435 Hispanic Americans from a large metropolitan area with English or Spanish language preference. Internal consistency reliability was strong in both language-preference groups. Multiple-group confirmatory factor analysis was used to evaluate the structural validity of the measure. A unidimensional factor structure was found for both English and Spanish language-preference groups and items loaded equivalently across groups, demonstrating measurement invariance. The BASH had good convergent validity and incremental validity. Overall, this study provides further evidence that the BASH offers a brief, reliable, and valid measure of acculturation to be used among Hispanic Americans.
- Fox, R. S., Merz, E. L., Solórzano, M. T., & Roesch, S. C. (2013). Further Examining Berry's Model: The Applicability of Latent Profile Analysis to Acculturation. Measurement and evaluation in counseling and development : the official publication of the Association for Measurement and Evaluation in Counseling and Development, 46(4), 270-288.More infoThis study used latent profile analysis (LPA) to identify acculturation profiles. A 3-profile solution fit the data best, and comparisons on demographic and psychosocial outcomes as a function of profile yielded expected results. The findings support using LPA as a parsimonious way to model acculturation without anticipating profiles in advance.
- Kwakkenbos, L., Jewett, L. R., Baron, M., Bartlett, S. J., Furst, D., Gottesman, K., Khanna, D., Malcarne, V. L., Mayes, M. D., Mouthon, L., Poiraudeau, S., Sauve, M., Nielson, W. R., Poole, J. L., Assassi, S., Boutron, I., Ells, C., van den Ende, C. H., Hudson, M., , Impens, A., et al. (2013). The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context. BMJ open, 3(8).More infoPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.
- Malcarne, V. L., Fox, R. S., Mills, S. D., & Gholizadeh, S. (2013). Psychosocial aspects of systemic sclerosis. Current opinion in rheumatology, 25(6), 707-13.More infoIn 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.
- Sobel-Fox, R. M., McSorley, A. M., Roesch, S. C., Malcarne, V. L., Hawes, S. M., & Sadler, G. R. (2013). Assessment of daily and weekly fatigue among African American cancer survivors. Journal of Psychosocial Oncology, 31(4), 413-429.
- You, W. B., Wolf, M., Bailey, S. C., Pandit, A. U., Waite, K. R., Sobel, R. M., & Grobman, W. (2012). Factors associated with patient understanding of preeclampsia. Hypertension in pregnancy, 31(3), 341-9.More infoTo explore the extent to which pregnant women understand the symptoms and potential complications related to preeclampsia and to determine the factors that are associated with better understanding.
- Sobel, R. M., Paasche-Orlow, M. K., Waite, K. R., Rittner, S. S., Wilson, E. A., & Wolf, M. S. (2009). Asthma 1-2-3: a low literacy multimedia tool to educate African American adults about asthma. Journal of community health, 34(4), 321-7.More infoAsthma 1-2-3 is a newly-developed low-literacy multimedia education tool designed to promote asthma self-care concepts among African American adults. An expert panel (n = 10) informed content development for the tool. The video script and storyboard imagery were shown to 30 African Americans recruited from the American Lung Association, whose reactions and comments guided further revisions. The final version was pilot tested in three diverse community settings in Chicago to determine the efficacy of Asthma 1-2-3 at improving patient understanding of asthma and its symptoms. In all, 130 adults participated in the pilot test. Knowledge scores significantly improved from pretest to posttest following presentation of the developed tool for subjects across all literacy levels (Pretest: Mean = 4.2 [SD = 1.6]; Posttest: M = 6.8 [SD = 2.0], P < 0.001). Symptom pathophysiology concepts were the least understood. Individuals with low literacy had less total knowledge score gains compared to those with marginal and adequate literacy (1.8, 2.6, and 3.2 respectively; P = 0.002). The multimedia tool significantly improved understanding of asthma. Individuals with limited literacy may require additional instruction, repeated viewing, or added tangible cues (i.e. supplementary print materials) to support knowledge retention. In general, feedback from the target population was particularly helpful in the development of the tool and its initial evaluation, and should be considered as a necessary step in the creation of other patient education materials.