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1.
J Community Genet ; 2024 Sep 06.
Article in English | MEDLINE | ID: mdl-39240499

ABSTRACT

Latinas are less likely to receive genetic counseling and genetic testing (GCT) compared to non-Latina Whites because of systemic and patient-level barriers. We developed and tested fotonovelas to increase awareness of GCT among Latinas at-risk of hereditary breast and ovarian cancer (HBOC). Content for the fotonovelas was drawn from an existing culturally targeted narrative video focused on improving GCT use among Latinas at-risk of HBOC. Using mixed methods, we interviewed cancer patients (n = 10) and their relatives (n = 10) to assess the preliminary efficacy of the fotonovelas through pre-and post-fotonovela items assessing self-rated knowledge of GCT and willingness to discuss cancer with family. Health workers (n = 10) provided feedback on the fotonovela content. McNemar's test was used to examine differences in the proportions of the outcomes pre- and post-fotonovelas. Interviews were transcribed and coded in Dedoose using a consensual qualitative research approach. Reading the fotonovelas increased self-rated knowledge of GCT by 22% (p = 0.16), from 50 to 60% in patients and from 63 to 100% among relatives. Analogously, reading the fotonovela increased willingness to talk about cancer with family by 33% (p = 0.02), from 70 to 100% in patients and from 38 to 75% in relatives. We identified six themes, some centered around the fotonovela's message, feedback, and perceived barriers to GCT. Overall, participants liked the use of fotonovelas to increase GCT awareness and cancer conversations with family. Fotonovelas could potentially be used as educational tools to increase GCT awareness and cancer conversations among Latino families at-risk of HBOC.

2.
Contemp Clin Trials ; 145: 107645, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39079612

ABSTRACT

BACKGROUND: Interventions to increase physical activity are needed in adolescent and young adult survivors of childhood cancer who are largely inactive but at lifelong elevated risk of multiple chronic conditions improved by physical activity. The goals of the StepByStep study are to evaluate the effects of a 48-week distance-based, multi-component mobile health and social media behavioral intervention on physical activity, biomarkers of cardiometabolic health, and health-related quality of life. METHODS: This ongoing study is a two-arm, prospective, multi-site randomized controlled trial. 384 childhood cancer survivors age ≥ 15 years and < 21 years who were 3-36 months off therapy and not meeting physical activity guidelines were enrolled. The trial will test the efficacy of a 24-week intensive multi-component physical activity intervention combining a wearable physical activity tracker, social media peer support group, and individualized goal setting followed by a 24-week maintenance phase of the intervention to improve outcomes. The control group receives the wearable physical activity tracker only. CONCLUSION: There is a growing need for novel, developmentally appropriate interventions to increase physical activity and improve the health trajectory of adolescent and young adult survivors of childhood cancer. If efficacious, this portable and scalable intervention would be a much-needed tool to reduce the morbidity from cancer treatment and improve quality of life among survivors after treatment ends. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04089358; COG Identifier: ALTE2031.


Subject(s)
Cancer Survivors , Exercise , Quality of Life , Social Media , Telemedicine , Humans , Adolescent , Cancer Survivors/psychology , Young Adult , Male , Female , Prospective Studies , Neoplasms/therapy , Neoplasms/psychology , Fitness Trackers , Research Design
3.
bioRxiv ; 2024 May 15.
Article in English | MEDLINE | ID: mdl-38798541

ABSTRACT

The skin integrates diverse signals discerned by sensory neurons and immune cells to elicit adaptive responses to a range of stresses. Considering interactions between nervous and immune systems, we questioned whether regulatory T cells (Treg cells), a T cell subset that suppresses systemic and local inflammation, can modulate activation of peripheral neurons. Short-term ablation of Treg cells increased neuronal activation to noxious stimuli independently from immunosuppressive function. We find that a population of skin Treg cells is highly enriched for Penk expression, a precursor for endogenous opioid enkephalins. Acute depletion of Penk-expressing Treg cells, or cell-specific ablation of Penk in Treg cells increases neuronal activation in response to noxious stimuli and associated inflammation. Our study indicates that a population of Treg cells exhibits neuromodulatory activity to restrain inflammation.

4.
PLOS Glob Public Health ; 4(4): e0002760, 2024.
Article in English | MEDLINE | ID: mdl-38625931

ABSTRACT

This study aimed to describe the prevalence and predictors of a positive VIA (visual inspection with acetic acid) cervical cancer screening test in women living with human immunodeficiency virus (HIV). We retrospectively analysed data from women aged ≥15 who accessed VIA screening from health facilities in the Lubombo and Manzini regions of Eswatini. Sociodemographic and clinical data from October 2020 to June 2023 were extracted from the client management information system (CMIS). VIA screening outcome was categorised into negative, positive, or suspicious. A logistic regression model estimated the adjusted odds ratio (AOR) of the predictors of a positive VIA screen at p<0.05 with 95% confidence intervals. Of 23,657 participants, 60.8% (n = 14,397) were from the Manzini region. The mean age was 33.3 years (standard deviation 7.0), and 33% (n = 7,714) were first-time screens. The prevalence of a positive VIA was 2.6% (95% CI: 2.2%, 3.0%): 2.8% (95% CI: 2.2%, 3.5%) in Lubombo and 2.4% (95% CI: 2.0%, 2.9%) in Manzini (p = 0.096). Screening at mission-owned (AOR 1.40; p = 0.001), NGO-owned (AOR 3.08; p<0.001) and industrial/workplace-owned health facilities (AOR 2.37; p = 0.044) were associated with increased odds of a positive VIA compared to government-owned health facilities. Compared to those aged 25-34, the odds of a positive VIA increased by 1.26 for those in the 35-44 age group (AOR 1.26; p = 0.017). Predictors with lower odds for a positive VIA test were: being on anti-retroviral therapy (ART) for 5-9 years (AOR 0.76; p = 0.004) and ≥10 years (AOR 0.66; p = 0.002) compared to <5 years; and having an undetectable viral load (AOR 0.39; p<0.001) compared to unsuppressed. Longer duration on ART and an undetectable viral load reduced the odds, while middle-aged women and screening at non-public health facilities increased the odds of a positive VIA screen.

5.
Microbiol Mol Biol Rev ; 88(2): e0015823, 2024 Jun 27.
Article in English | MEDLINE | ID: mdl-38551349

ABSTRACT

SUMMARYThe metabolic conditions that prevail during bacterial growth have evolved with the faithful operation of repair systems that recognize and eliminate DNA lesions caused by intracellular and exogenous agents. This idea is supported by the low rate of spontaneous mutations (10-9) that occur in replicating cells, maintaining genome integrity. In contrast, when growth and/or replication cease, bacteria frequently process DNA lesions in an error-prone manner. DNA repairs provide cells with the tools needed for maintaining homeostasis during stressful conditions and depend on the developmental context in which repair events occur. Thus, different physiological scenarios can be anticipated. In nutritionally stressed bacteria, different components of the base excision repair pathway may process damaged DNA in an error-prone approach, promoting genetic variability. Interestingly, suppressing the mismatch repair machinery and activating specific DNA glycosylases promote stationary-phase mutations. Current evidence also suggests that in resting cells, coupling repair processes to actively transcribed genes may promote multiple genetic transactions that are advantageous for stressed cells. DNA repair during sporulation is of interest as a model to understand how transcriptional processes influence the formation of mutations in conditions where replication is halted. Current reports indicate that transcriptional coupling repair-dependent and -independent processes operate in differentiating cells to process spontaneous and induced DNA damage and that error-prone synthesis of DNA is involved in these events. These and other noncanonical ways of DNA repair that contribute to mutagenesis, survival, and evolution are reviewed in this manuscript.


Subject(s)
Bacillus subtilis , DNA Repair , Mutagenesis , DNA Repair/genetics , Bacillus subtilis/genetics , Bacillus subtilis/physiology , Stress, Physiological/genetics , DNA Damage , Bacterial Proteins/genetics , Bacterial Proteins/metabolism , DNA Replication , DNA, Bacterial/genetics , Spores, Bacterial/genetics , Spores, Bacterial/growth & development
6.
J Rehabil Med ; 55: jrm11641, 2023 Dec 20.
Article in English | MEDLINE | ID: mdl-38124428

ABSTRACT

OBJECTIVE: To evaluate the quality of sexual life in men with spinal cord injury. DESIGN: Cross-sectional analytical study. PATIENTS: Males with a history of spinal cord injury who attended an outpatient rehabilitation service. METHODS: An analytical study examined adult male patients with complete spinal cord injury in rehabilitation. A modified Sexual Life Quality Questionnaire (SLQQ) examined quality of sexual life, with scores below 50 suggesting significant sexual dysfunction and dissatisfaction. The assessment evaluated age, occupation, marital status, comorbidities, and treatment methods. RESULTS: A total of 80 patients were included; 33 (41%) had a thoracic spinal cord injury, and 47 (59%) had a lumbar spinal cord injury. Thirty-seven patients (46%) were dissatisfied with the quality of their sexual life; 29 patients (88%) with thoracic spinal cord injury and 8 patients (17%) with lumbar spinal cord injury were dissatisfied with the quality of their sexual life (p = 0.001). Patients with higher education level experienced less sexual dissatisfaction (p = 0.03). CONCLUSION: Human sexuality involves numerous interconnected elements that impact on general health. Sexual pleasure, self-esteem, and personal relationships are crucial for patients with spinal cord injury to identify rehabilitation needs. These results indicate the importance of supporting sexual well-being in recovery. Further studies of sexual enjoyment and quality of life for patients with spinal cord injury are needed, using larger and more diverse populations.


Subject(s)
Quality of Life , Spinal Cord Injuries , Adult , Humans , Male , Cross-Sectional Studies , Sexual Behavior , Sexuality , Spinal Cord Injuries/rehabilitation
7.
Cancer ; 129(S19): 3141-3151, 2023 09.
Article in English | MEDLINE | ID: mdl-37691526

ABSTRACT

INTRODUCTION: The Achieving Cancer Equity through Identification, Testing, and Screening (ACE-ITS) program is a community-engaged framework to improve mammography maintenance and rates of genetic risk assessment, counseling, and testing using a multilevel approach that enhances patient navigation through mobile health and community education. METHODS: The ACE-ITS program is based on the National Institute of Minority Health and Health Disparities research framework focused on the individual (genetic testing, screening navigation) and community (community-based breast health education) levels and targeted to the biological- (genetic risk), behavioral- (mammography screening), sociocultural- (underserved Black and Hispanic women), and the health care system (patient navigation, automated text messages)-related domains. We further integrate the Practical Robust Implementation and Sustainability Model to describe our program implementation. RESULTS: In collaboration with genetic counselors and community partners, we created educational modules on mammography maintenance and genetic counseling/testing that have been incorporated into the navigator-led community education sessions. We also implemented a universal genetic risk assessment tool and automated text message reminders for repeat mammograms into our mammography navigation workflow. Through the ACE-ITS program implementation, we have collaboratively conducted 22 educational sessions and navigated 585 women to mammography screening over the 2020-2021 calendar years. From January to December 2021, we have also conducted genetic risk assessment on 292 women, of whom 7 have received genetic counseling/testing. CONCLUSIONS: We describe a multilevel, community-engaged quality improvement program designed to reduce screening-related disparities in Black and Hispanic women in our catchment area.


Subject(s)
Early Detection of Cancer , Neoplasms , Female , Humans , Academies and Institutes , Black People , Genetic Counseling , Neoplasms/diagnosis , Neoplasms/genetics , Pilot Projects , Health Equity , Vulnerable Populations , Hispanic or Latino , Medically Underserved Area
8.
Nat Immunol ; 24(6): 1020-1035, 2023 06.
Article in English | MEDLINE | ID: mdl-37127830

ABSTRACT

While regulatory T (Treg) cells are traditionally viewed as professional suppressors of antigen presenting cells and effector T cells in both autoimmunity and cancer, recent findings of distinct Treg cell functions in tissue maintenance suggest that their regulatory purview extends to a wider range of cells and is broader than previously assumed. To elucidate tumoral Treg cell 'connectivity' to diverse tumor-supporting accessory cell types, we explored immediate early changes in their single-cell transcriptomes upon punctual Treg cell depletion in experimental lung cancer and injury-induced inflammation. Before any notable T cell activation and inflammation, fibroblasts, endothelial and myeloid cells exhibited pronounced changes in their gene expression in both cancer and injury settings. Factor analysis revealed shared Treg cell-dependent gene programs, foremost, prominent upregulation of VEGF and CCR2 signaling-related genes upon Treg cell deprivation in either setting, as well as in Treg cell-poor versus Treg cell-rich human lung adenocarcinomas. Accordingly, punctual Treg cell depletion combined with short-term VEGF blockade showed markedly improved control of PD-1 blockade-resistant lung adenocarcinoma progression in mice compared to the corresponding monotherapies, highlighting a promising factor-based querying approach to elucidating new rational combination treatments of solid organ cancers.


Subject(s)
Neoplasms , T-Lymphocytes, Regulatory , Animals , Mice , Humans , Vascular Endothelial Growth Factor A/genetics , Vascular Endothelial Growth Factor A/metabolism , Tumor Microenvironment , Neoplasms/metabolism
9.
Contemp Clin Trials ; 130: 107210, 2023 07.
Article in English | MEDLINE | ID: mdl-37142159

ABSTRACT

BACKGROUND: Genetic counseling and testing (GCT) informs risk reduction and management strategies in women at risk for carrying a pathogenic variation in the BRCA1 or BRCA2 (BRCA1/2) genes. African American (hereinafter referred to as Black) women are less likely to receive GCT services for hereditary breast and ovarian cancer (HBOC). The objective of this work was to examine existing literature regarding successful culturally tailored GCT interventions for Black women and to describe the rationale and protocol for a randomized feasibility trial to test the efficacy of a culturally tailored GCT intervention. METHODS/DESIGN: The For Our Health (FOH) study is a two-arm randomized control trial designed to test the efficacy of a video intervention to promote the uptake of GCT among Black women with a high risk of HBOC. The culturally tailored video intervention targets key beliefs, knowledge gaps, misconceptions, and key anticipated emotions relevant for GCT. After completing the baseline survey, 50 women at risk of HBOC will be randomized (1:1) to one of two trial arms: a YouTube video intervention or a publicly available fact sheet. Final assessments will immediately follow receipt of either video or fact sheet. CONCLUSION: Few studies have tested interventions to improve GCT uptake among Black women. The FOH trial will fill an important scientific gap in knowledge regarding strategies to reduce disparities in GCT among Black women at risk of HBOC.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Female , Humans , Black or African American , BRCA1 Protein/genetics , BRCA2 Protein/genetics , Breast Neoplasms/psychology , Genetic Counseling/psychology , Genetic Testing , Randomized Controlled Trials as Topic
10.
J Genet Couns ; 32(5): 965-981, 2023 10.
Article in English | MEDLINE | ID: mdl-37062905

ABSTRACT

Genetic counseling and testing (GCT) inform cancer management for persons at risk for hereditary breast and ovarian cancer (HBOC). Community-based organizations (CBOs) may play a role in identifying at-risk Latinx individuals to connect them to GCT but data are lacking. Two academic centers and their four CBO partners planned to implement a validated questionnaire for HBOC risk screening ("HBOC risk screening tool"). This study aimed to assess CBO's preferences for HBOC risk screening tools, as well as the barriers and facilitators anticipated for future implementation. Pre-implementation focus groups were conducted with CBO's staff. Discussions centered on current practices to identify and refer at-risk patients. During the discussion, staff were asked to select one out of five validated HBOC risk screening tools to implement and to discuss anticipated barriers/facilitators for implementation. The four focus groups were coded and qualitative analyzed following the Consolidated Framework for Implementation Research (CFIR) and Health Equity domains. All CBOs chose the Family History Screen 7 (FHS-7). Participants (N = 35) highlighted how the FHS-7 was easy to adapt to better fit the target population and changing guidelines. They had positive attitudes toward implementing the screening tool, stressed how the culture of the organization positioned them to reach the target population, and noted barriers in different CFIR domains (e.g., low knowledge about HBOC and GCT referrals; scarce available resources). Participants pointed to barriers related to health equity domains including limited access to GCT and follow-up care for uninsured and underinsured populations, challenges obtaining accurate family history, and immigration-related barriers. CBOs highlighted the importance of partnering with other stakeholders to overcome barriers. Findings emphasize the need to develop multi-level implementation strategies to overcome barriers and leverage facilitators. This study can inform the development of implementation toolkits for CBOs to implement HBOC screening tools to advance health equity.


Subject(s)
Breast Neoplasms , Health Equity , Ovarian Neoplasms , Humans , Female , Early Detection of Cancer , Breast Neoplasms/diagnosis , Breast Neoplasms/genetics , Qualitative Research , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/genetics
11.
Teach Learn Med ; : 1-18, 2023 Apr 19.
Article in English | MEDLINE | ID: mdl-37074228

ABSTRACT

Problem: Academic medical centers need to mitigate the negative effects of implicit bias with approaches that are empirically-based, scalable, sustainable, and specific to departmental needs. Guided by Kotter's Model of Change to create and sustain cultural change, we developed the Bias Reduction Improvement Coaching Program (BRIC), a two-year, train-the-trainer implicit bias coaching program designed to meet the increasing demand for bias training across a university medical center. Intervention: BRIC trained a cohort of faculty and staff as coaches during four quarterly training sessions in Year 1 that covered 1) the science of bias, 2) bias in selection and hiring, 3) bias in mentoring, and 4) bias in promotion, retention, and workplace culture. In Year 2, coaches attended two booster sessions and delivered at least two presentations. BRIC raises awareness of bias mitigation strategies in a scalable way by uniquely building capacity through department-level champions, providing programming that addresses the 'local context,' and setting a foundation for sustained institutional change. Context: In a U.S. academic medical center, 27 faculty and staff from 24 departments were trained as inaugural BRIC coaches. We assessed outcomes at multiple levels: BRIC coach outcomes (feedback on the training sessions; coach knowledge, attitudes, and skills), departmental-level outcomes (program attendee feedback, knowledge, and intentions) and institutional outcomes (activities to sustain change). Impact: After Year 1, coaches reported high satisfaction with BRIC and a statistically significant increase in self-efficacy in their abilities to recognize, mitigate, and teach about implicit bias. In Year 2, attendees at BRIC coach presentations reported an increase in bias mitigation knowledge, and the majority committed to taking follow-up action (e.g., taking an Implicit Association Test). Coaches also launched activities for sustaining change at the broader university and beyond. Lessons Learned: The BRIC Program indicates a high level of interest in receiving bias mitigation training, both among individuals who applied to be BRIC coaches and among presentation attendees. BRIC's initial success supports future expansion. The model appears scalable and sustainable; future efforts will formalize the emerging community of practice around bias mitigation and measure elements of on-going institutional culture change.

12.
Transl Behav Med ; 13(5): 297-308, 2023 05 13.
Article in English | MEDLINE | ID: mdl-36694918

ABSTRACT

Telephone genetic counseling (TGC) is accepted as standard clinical care for people seeking hereditary cancer risk assessment. TGC has been shown to be non-inferior to in-person genetic counseling, but trials have been conducted with a predominantly highly educated, non-Hispanic White population. This article describes the process of culturally adapting a TGC protocol and visual aid booklet for Spanish-preferring Latina breast cancer survivors at risk for hereditary breast and ovarian cancers. The adaptation process included two phases. Phase 1 involved a review of the literature and recommendations from an expert team including community partners. Phase 2 included interviews and a pilot with the target population (n = 14) to collect feedback about the adapted protocol and booklet following steps from the Learner Verification and Revision Framework. We describe the adaptation process and report the main adaptations following the Framework for Reporting Adaptations and Modifications to Evidence-based Interventions (FRAME). Adaptations in Phase 1 were responsive to the target population needs and characteristics (e.g., delivered in Spanish at an appropriate health literacy level, addressing knowledge gaps, targeting cultural values). Phase 2 interviews were crucial to refine details (e.g., selecting words) and to add components to address GCT barriers (e.g., saliva sample video). Cultural adaptations to evidence-based TGC protocols can increase the fit and quality of care for historically underserved populations. As TGC visits become routine in clinical care, it is crucial to consider the needs of diverse communities to adequately promote equity and justice in cancer care.


This article describes the process of adapting a telephone genetic counseling protocol and visual aid booklet for Spanish-preferring Latina breast cancer survivors at increased risk for hereditary breast and ovarian cancer (HBOC). The cultural adaptation process followed two phases. In the first phase, the authors reviewed the literature and obtained insights from interdisciplinary experts. In the second phase, the authors received iterative feedback from fourteen Latina women who were breast cancer survivors, spoke Spanish as a first language, and met criteria to be considered at increased risk for HBOC. Revisions to the protocol and visual aid booklet were conducted iteratively following feedback from the expert team, after the first five women reviewed the booklet, after the second five women reviewed the booklet, and after the final four women completed the entire culturally adapted telephone genetic counseling protocol with the booklet. The final adaptations to the protocol and visual aid booklet were responsive to the target population's needs. Most adaptations made were regarding content. For example, simplifying the material presented, adding culturally relevant images, and developing a video explaining how to collect a saliva sample. Culturally adapting health interventions can improve health outcomes in historically marginalized populations and promote equity.


Subject(s)
Breast Neoplasms , Cancer Survivors , Ovarian Neoplasms , Humans , Female , Genetic Counseling/psychology , Breast Neoplasms/genetics , Breast Neoplasms/psychology , Pamphlets , Ovarian Neoplasms/genetics , Hispanic or Latino/psychology , Telephone , Review Literature as Topic
13.
J Cancer Surviv ; 2022 Nov 22.
Article in English | MEDLINE | ID: mdl-36417116

ABSTRACT

PURPOSE: Few studies have examined experiences of stigma and factors associated with symptoms among cervical cancer survivors from diverse racial and ethnic backgrounds. We investigated survivorship experiences and patient-reported outcomes in the SPADE symptom cluster (sleep disturbance, pain interference, anxiety, depression, and energy/fatigue) among Black, Latina, and Chinese American women diagnosed with cervical cancer. METHODS: In two phases of research with cervical cancer survivors, we collected qualitative data through individual interviews (N=12; recruited through community referrals) and quantitative data from an observational cohort study (N=91; recruited through 4 national cancer registries). We coded interview transcripts to describe the survivors' experiences. We then evaluated associations between social support, spirituality, and SPADE symptom cluster domains using linear regression models. RESULTS: Qualitative analysis yielded four themes: perceptions of stigma, empowerment, physical and psychological effects, and social support. These concepts revolved around internal and external stigmas, emotional responses, strengthened faith, and different social support types. Quantitative analyses indicated that greater spirituality was associated with lower symptom burden on all five SPADE domains (p<0.01). We observed nuanced associations between specific types of social support and SPADE domains. CONCLUSIONS: The survivorship experiences of Black, Latina, and Chinese American women with cervical cancer are negatively influenced by perceptions of stigma. Higher scores on spirituality and varied types of social support were significantly associated with fewer symptoms in the SPADE symptom cluster. IMPLICATIONS FOR CANCER SURVIVORS: Results suggest targets for future interventions to reduce symptom burden among women diagnosed with cervical cancer by leveraging spirituality and social support.

14.
Health Technol (Berl) ; 12(6): 1071-1084, 2022.
Article in English | MEDLINE | ID: mdl-36406185

ABSTRACT

Purpose: Optimal treatment adherence is critical in the management of breast cancer patients/survivors taking hormonal therapy. However, lack of adherence is common. Many technologies have been developed to encourage medication intake, such as reminders on phones or digital pills, with varying degrees of success. Methods: To explore the role of technology in medical adherence requires a framework that considers all complexities of technology, from software to the end user's beliefs. Actor Network Theory (ANT) defines technology based on its technical, social, and abstract components. We conducted three focus groups, which we analyzed using a thematic analysis to determine topics in breast cancer survivors' discussions of these technologies. We also conducted a deductive content analysis using ANT concepts as codes. Results: In discussing the use of technology to improve medical adherence, participants had an empowering view of technology (48.8%) a neutral one (41.5%) or a disempowering view (9.8%). When it comes to their medication adherence, breast cancer survivors taking hormonal therapy perceived technology as something on which they could assert agency while their own agency dictated their adherence behaviors. Conclusions: In line with a non-technologically deterministic view of medical technologies, this finding shows that technology can be both constraining and enabling, depending on the specific context of human use. This networked understanding of technology in terms of social dynamics has relevant implications in designing interventions that use technology to improve adherence.

15.
Adv Ther ; 39(9): 4061-4075, 2022 09.
Article in English | MEDLINE | ID: mdl-35776398

ABSTRACT

INTRODUCTION: Adherence to adjuvant therapy is crucial for effective disease management in patients with resected melanoma. This study assessed patient-reported adherence to adjuvant therapy and identified behavioral/belief constructs associated with adherence in patients with resected melanoma. METHODS: Patients with resected stage III/IV melanoma were recruited through the Melanoma Research Foundation and a patient panel to complete an online survey. Patient characteristics, medical history, and adherence to therapy were captured. In accordance with the theory of planned behavior (TPB), the survey measured behavioral, normative, and control beliefs, and intention to adhere to therapy. Structural equation modeling (SEM) examined their relationships with adherence. RESULTS: Among all patients who received adjuvant therapy and completed the survey (n = 184), 69% received intravenous and 31% received oral therapy; the majority (85.3%) were somewhat involved in deciding to start therapy. Mean age was 45 years, 44% of patients were female, and 83% had stage III/IV disease at diagnosis. Patients had a mean disease duration of 1.5 years, a time since complete resection of 10 months, and an adjuvant therapy duration of 8 months. Adherence to adjuvant therapy was high overall and higher with intravenous than with oral therapy (98.4% versus 91.2%, P = 0.002). All underlying TPB constructs were significant in the SEM model, which explained 60.3% of the variance in intention to adhere. Control beliefs had the strongest association with intention to adhere (standardized estimate = 0.47, P < 0.001) and intravenous therapy was associated with greater adherence than oral therapy (standardized estimate = 0.26, P < 0.001). CONCLUSIONS: This study found that patients with resected melanoma are highly engaged in the decision to initiate systemic adjuvant therapy, with an overall high adherence rate to prescribed adjuvant treatment. Enhancing patients' view of their capability to adhere to treatments may further improve the adherence rate to melanoma adjuvant therapy.


Subject(s)
Melanoma , Skin Neoplasms , Adjuvants, Immunologic , Combined Modality Therapy , Female , Humans , Male , Melanoma/drug therapy , Melanoma/surgery , Middle Aged , Skin Neoplasms/drug therapy , Skin Neoplasms/surgery , Melanoma, Cutaneous Malignant
16.
Andes Pediatr ; 93(3): 416-422, 2022 Jun.
Article in Spanish | MEDLINE | ID: mdl-35857013

ABSTRACT

INTRODUCTION: Chronic active Epstein Barr virus infection (CAEBV) is a rare condition, where the body is unable to counteract Epstein Barr viral replication (EBV), leading the patient to a chronic state with variable symptoms. Early recognition of infrequent or atypical clinical manifestations is relevant due to the particularities of their management and prognosis. OBJECTIVE: to describe a case of CAEBV manifes ted with colitis and hepatitis, summarizing the clinical-pathological and endoscopic characteristics and their evolution. CLINICAL CASE: A 6-year-old girl, previously healthy, presented recurrent episodes of jaundice, hepatosplenomegaly, and fever. EBV hepatitis was diagnosed with a blood viral load of 328,000 copies / mL. Her liver biopsy revealed Epstein-Barr virus-encoded small RNAs (EBER). She evolved with mucosanguineous diarrhea and weight loss; the colonoscopy showed loss of the haustral pattern, multiple aphthous ulcers covered with fibrin, and 7 million copies of EBV / gram of tissue were found in the colon. T-cell lineage infection was identified, therefore Rituximab was started, with a decrease in viral load, complete resolution of diarrhea, and improvement in liver function tests. The definitive treatment was bone marrow transplantation. CONCLUSIONS: CAEBV is a serious disor der, little documented, and should be considered in the face of a prolonged or intermittent course of hepatitis, accompanied by general and gastrointestinal manifestations such as chronic diarrhea, hematochezia, and weight loss, since its outcome without treatment can be fatal.


Subject(s)
Epstein-Barr Virus Infections , Hepatitis, Viral, Human , Child , Chronic Disease , Colon/pathology , Diarrhea/complications , Epstein-Barr Virus Infections/complications , Epstein-Barr Virus Infections/diagnosis , Female , Hepatitis, Viral, Human/complications , Herpesvirus 4, Human , Humans , Persistent Infection , Weight Loss
17.
Prev Med Rep ; 28: 101887, 2022 Aug.
Article in English | MEDLINE | ID: mdl-35855922

ABSTRACT

Background: Minorities at increased risk for Hereditary Breast and Ovarian Cancer (HBOC) frequently have low awareness and use of genetic counseling and testing (GCT). Making sure that evidence-based interventions (EBIs) reach minorities is key to reduce disparities. BRCA-Gist is a theory-informed EBI that has been proven to be efficacious in mostly non-Hispanic White non-clinical populations. We conducted formative work to inform adaptations of BRCA-Gist for use in clinical settings with at-risk diverse women. Methods: Genetic counselors (n = 20) were recruited nationally; at-risk Latinas and Blacks (n = 21) were recruited in Washington DC and Virginia. They completed the BRCA-Gist EBI between April 2018 - September 2019. Participants completed an acceptability scale and an interview to provide suggestions about implementation adaptations. T-tests for independent samples compared acceptability between at-risk women and genetic counselors. The Consensual Qualitative Research Framework was used to code adaptation suggestions. Suggested adaptations were discussed by a multidisciplinary team to integrate fidelity and adaptation considerations. Results: At-risk women had a significantly higher acceptability (M = 4.17, SD = 0.47 vs. M = 3.24, SD = 0.64; p = 0.000; scale 1-5) and satisfaction scores (M = 8.3, SD = 1.3 vs. M = 4.2, SD = 2.0; p = 0.000; scale 1-10) than genetic counselors. Genetic counselors and at-risk women suggested contextual (e.g. format) and content (e.g. shortening) adaptations to enhance the fit of BRCA-Gist for diverse clinical populations. Conclusions: Findings illustrate the process of integrating fidelity and adaptation considerations to ensure that EBIs retain their core components while enhancing the fit to minoritized clinical populations. Future studies will test the efficacy of the adapted BRCA-Gist in a Randomized Controlled Trial.

18.
J Community Psychol ; 50(3): 1331-1342, 2022 04.
Article in English | MEDLINE | ID: mdl-34606624

ABSTRACT

Latina women, who are at increased risk of hereditary breast and ovarian cancer (HBOC), have lower use of genetic counseling and testing (GCT) than non-Hispanic White women. In a recent study, culturally targeted video improved psychosocial outcomes related to GCT. Additional analyses examine whether the culturally targeted video improved positive reactions in women who focus on difficulties (concrete mindset) versus women who focus on the final goals (abstract mindset). Participants (N = 32) completed surveys before and immediately after watching the video. The surveys measured attitudes, emotions, and women's mindset. Before watching the video, women with a concrete mindset reported more negative attitudes and negative emotions about GCT than women with an abstract mindset. After watching the video, women with a concrete mindset reported negative attitudes and feelings at levels comparable to those of women with an abstract mindset, reflecting a reduction in their negative attitudes and emotions. The sample size limits the power to find statistically significant differences. Results support the relevance of considering the audience's mindset in the development and testing of public health messages to promote the use of GCT.


Subject(s)
Breast Neoplasms , Genetic Counseling , Breast Neoplasms/genetics , Breast Neoplasms/psychology , Female , Genetic Counseling/psychology , Genetic Testing , Hispanic or Latino , Humans
19.
Transl Behav Med ; 12(1)2022 01 18.
Article in English | MEDLINE | ID: mdl-34255089

ABSTRACT

Cancer health disparities remain a significant problem in the USA, compounded by lack of access to care, language barriers and systemic biases in health care. These disparities are particularly evident in areas such as genetics/genomics. For example, Latinas at high risk for hereditary breast and ovarian cancer (HBOC) have extremely low rates of genetic counseling/testing. Long-standing barriers and inequities in access to services such as genetic counseling and testing require innovative solutions. One solution can involve training community outreach and education professionals (CORE-Ps) to bridge the gap between underserved communities and genetic specialists. We sought to develop and pilot test a training program for English-Spanish bilingual CORE-Ps to reduce disparities in access to and uptake of genetic services among Latino populations. Guided by Adult Learning Theory and with input from multiple stakeholders, we developed ÁRBOLES Familiares (Family Trees), an in-person and online training program for bilingual CORE-Ps to facilitate identification, referral, and navigation of Latinas to genetic counseling/testing. We conducted a pilot test of 24 CORE-Ps recruited from across the United States and assessed knowledge, genetic literacy, and self-efficacy at baseline and follow-up. At follow-up, participants in the pilot with complete baseline and follow-up data (N = 15) demonstrated significant improvements in HBOC knowledge, genetic literacy, self-efficacy and reports of fewer barriers to identify/navigate Latinas (ps < .05). Qualitative assessment identified ways to improve the training curriculum. Pilot results suggest ÁRBOLES is a promising approach for training CORE-Ps to identify and refer high-risk Latinas to genetic services. Next steps involve further refinement of ÁRBOLES, development of an online toolkit, and adaptation for virtual delivery.


Latinas at high risk for hereditary breast and ovarian cancer (HBOC) have low rates of genetic counseling and testing. Latinas may not have ready access to services like genetic counseling and testing, which need special solutions. One solution can involve training community health workers to bridge the gap between Latinas and genetic specialists. We developed an online and in person training program (ÁRBOLES Familiares or Family Trees) for English-Spanish bilingual community health workers that teaches them how to help Latinas get access to genetic services. We tested this program with a small group of community health workers. After the program, their HBOC knowledge, genetic literacy, and confidence to help Latinas get access to genetic services had improved. Trainees also made suggestions to improve the program, which will be used to help future trainees expand their knowledge and skills to work with Latinas at risk of HBOC.


Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Adult , Breast Neoplasms/genetics , Breast Neoplasms/psychology , Female , Genetic Counseling/psychology , Genetic Testing , Hispanic or Latino , Humans , Ovarian Neoplasms/genetics
20.
J Cancer Surviv ; 16(6): 1379-1389, 2022 12.
Article in English | MEDLINE | ID: mdl-34655040

ABSTRACT

PURPOSE: Social support is associated with breast cancer survivors' health-related quality of life (HRQoL). More nuanced information is needed regarding aspects of social support associated with different HRQoL domains among diverse populations. We assessed the association between emotional/informational and tangible support and five HRQoL domains and evaluated race as an effect modifier. METHODS: African American and White women (n = 545) diagnosed with hormone-receptor-positive breast cancer completed a survey that assessed sociodemographic, clinical, and psychosocial factors. We assessed bivariate relationships between emotional/informational and tangible support along with overall HRQoL and each HRQoL domain.We tested interactions between race and emotional/informational and tangible social support using linear regression. RESULTS: The sample included African American (29%) and White (71%) breast cancer survivors. Emotional/informational social support had a statistically significant positive association with emotional well-being (ß = .08, p = 0.005), social well-being (ß = 0.36, p < 0.001), functional well-being (ß = .22, p < .001), breast cancer concerns (ß = .16, p = 0.002), and overall HRQoL (ß = .83, p < .001). Similarly, tangible social support had a statistically significant positive association with emotional well-being (ß = .14, p = 0.004), social well-being (ß = .51, p < .001), functional well-being (ß = .39, p < .001), and overall HRQoL (ß = 1.27, p < .001). The interactions between race and social support were not statistically significant (p > 0.05). CONCLUSIONS: Results underscore the importance of the different social support types among breast cancer survivors, regardless of survivors' race. IMPLICATIONS FOR CANCER SURVIVORS: Population-based interventions can be standardized and disseminated to provide guidance on how to increase emotional/information and tangible support for all breast cancer survivors by caregivers, health providers, and communities.


Subject(s)
Breast Neoplasms , Cancer Survivors , Female , Humans , Cancer Survivors/psychology , Black or African American , Quality of Life/psychology , Breast Neoplasms/psychology , Survivors/psychology , Social Support
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