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1.
CA Cancer J Clin ; 2024 Jun 19.
Article in English | MEDLINE | ID: mdl-38896503

ABSTRACT

Social media is widely used globally by patients, families of patients, health professionals, scientists, and other stakeholders who seek and share information related to cancer. Despite many benefits of social media for cancer care and research, there is also a substantial risk of exposure to misinformation, or inaccurate information about cancer. Types of misinformation vary from inaccurate information about cancer risk factors or unproven treatment options to conspiracy theories and public relations articles or advertisements appearing as reliable medical content. Many characteristics of social media networks-such as their extensive use and the relative ease it allows to share information quickly-facilitate the spread of misinformation. Research shows that inaccurate and misleading health-related posts on social media often get more views and engagement (e.g., likes, shares) from users compared with accurate information. Exposure to misinformation can have downstream implications for health-related attitudes and behaviors. However, combatting misinformation is a complex process that requires engagement from media platforms, scientific and health experts, governmental organizations, and the general public. Cancer experts, for example, should actively combat misinformation in real time and should disseminate evidence-based content on social media. Health professionals should give information prescriptions to patients and families and support health literacy. Patients and families should vet the quality of cancer information before acting upon it (e.g., by using publicly available checklists) and seek recommended resources from health care providers and trusted organizations. Future multidisciplinary research is needed to identify optimal ways of building resilience and combating misinformation across social media.

2.
AJPM Focus ; 3(2): 100187, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38327655

ABSTRACT

Introduction: Colorectal cancer is a leading cause of cancer death in the U.S. Until 2021, the U.S. Preventive Services Task Force recommended colorectal cancer screening for all adults aged 50-75 years. Using a nationally representative sample, we explored the associations between having colorectal cancer screening and key sociodemographic and health-related factors among U.S. adults aged 50-75 years. Methods: We analyzed self-reported data from the National Cancer Institute's Health Information National Trends Survey 5 (Cycle 4) collected from February to June 2020. A multivariable weighted logistic regression model was conducted using all of the factors that were univariably significant with p<0.10. Using backward elimination, factors that were not significant with p>0.05 were removed one at a time until the remaining factors were all significant collectively with p<0.05. Results: Complete data were available for 1,649 respondents: 1,384 (81.2% weighted) had a colorectal cancer screening test, and 265 (18.8% weighted) did not. Multivariably, the odds of having had a colorectal cancer screening test increased with age (OR=1.07) and were higher for participants who identified as Black/African American than for White participants (OR=2.4), participants who had a family member who ever had cancer (OR=1.7), participants who believed that being overweight and obese influences development of cancer a lot than those who believed not at all (OR=2.0), and participants who had friends or family to talk with about health (OR=2.3). Conclusions: Age, race, family history, weight-related beliefs about the causes of cancer, and having someone to talk with about health were associated with having colorectal cancer screening test.

3.
J Urol ; 211(3): 376-383, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38329047

ABSTRACT

PURPOSE: Although the majority of US adults obtain health information on the internet, the quality of information about prostate cancer is highly variable. Black adults are underrepresented in online content about prostate cancer despite a higher incidence of and mortality from the disease. The goal of this study was to explore the perspectives of Black patients with prostate cancer on the importance of racial representation in online content and other factors influencing trust. MATERIALS AND METHODS: We conducted 7 virtual focus groups with Black patients with prostate cancer in 2022 and 2023. Participants completed an intake questionnaire with demographics followed by a group discussion, including feedback on purposefully selected online content. Transcripts were independently analyzed by 2 investigators experienced in qualitative research using a constant comparative method. RESULTS: Most participants use online sources to look for prostate cancer information. Racial representation is an important factor affecting trust in the content. A lack of Black representation has consequences, including misperceptions about a lower risk of prostate cancer and discouraging further information-seeking. Other key themes affecting trust in online content included the importance of a reputable source of information, professional website structure, and soliciting money. CONCLUSIONS: Underrepresentation of Black adults in prostate cancer content has the potential to worsen health disparities. Optimal online communications should include racially diverse representation and evidence-based information in a professional format from reputable sources without financial conflict.


Subject(s)
Digital Health , Prostatic Neoplasms , Trust , Adult , Humans , Male , Focus Groups , Black or African American
4.
Health Educ Behav ; 51(3): 359-366, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38366884

ABSTRACT

Black men have a greater risk of prostate cancer as well as worse quality of life and more decisional regret after prostate cancer treatment compared to non-Hispanic White men. Furthermore, patients with prostate cancer who primarily obtain information on the internet have significantly more decisional regret compared to other information sources. Our objective was to explore the perspectives of Black patients on the use and impact of the internet for their prostate cancer care. In 2022-2023, we conducted seven virtual focus groups with Black patients with prostate cancer (n = 22). Transcripts were independently analyzed by two experienced researchers using a constant comparative method. Online sources were commonly used by participants throughout their cancer journey, although informational needs varied over time. Patient factors affected use (e.g., physical health and experience with the internet), and family members played an active role in online information-seeking. The internet was used before and after visits to the doctor. Key topics that participants searched for online included nutrition and lifestyle, treatment options, and prostate cancer in Black men. Men reported many downstream benefits with internet use including feeling more empowered in decision-making, reducing anxiety about treatment and providing greater accountability for research. However, they also reported negative impacts such as feeling overwhelmed or discouraged sorting through the information to identify high-quality content that is personally relevant, as well as increased anxiety or loss of sleep from overuse. In summary, online sources have the potential to positively impact the cancer journey by reinforcing or supplementing information from health care providers, but can be harmful if the information is poor quality, not representative, or the internet is overused.


Subject(s)
Black or African American , Focus Groups , Prostatic Neoplasms , Qualitative Research , Quality of Life , Humans , Male , Prostatic Neoplasms/therapy , Prostatic Neoplasms/psychology , Prostatic Neoplasms/ethnology , Black or African American/psychology , Middle Aged , Aged , Information Seeking Behavior , Internet Use , Internet
5.
Nat Rev Urol ; 21(6): 329-338, 2024 06.
Article in English | MEDLINE | ID: mdl-38168921

ABSTRACT

Decisions around prostate-specific antigen screening require a patient-centred approach, considering the benefits and risks of potential harm. Using shared decision-making (SDM) can improve men's knowledge and reduce decisional conflict. SDM is supported by evidence, but can be difficult to implement in clinical settings. An inclusive definition of SDM was used in order to determine the prevalence of SDM in prostate cancer screening decisions. Despite consensus among guidelines endorsing SDM practice, the prevalence of SDM occurring before the decision to undergo or forgo prostate-specific antigen testing varied between 11% and 98%, and was higher in studies in which SDM was self-reported by physicians than in patient-reported recollections and observed practices. The influence of trust and continuity in physician-patient relationships were identified as facilitators of SDM, whereas common barriers included limited appointment times and poor health literacy. Decision aids, which can help physicians to convey health information within a limited time frame and give patients increased autonomy over decisions, are underused and were not shown to clearly influence whether SDM occurs. Future studies should focus on methods to facilitate the use of SDM in clinical settings.


Subject(s)
Decision Making, Shared , Early Detection of Cancer , Physician-Patient Relations , Prostatic Neoplasms , Humans , Prostatic Neoplasms/diagnosis , Male , Prostate-Specific Antigen/blood , Patient Participation
6.
Patient Educ Couns ; 119: 108054, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37992528

ABSTRACT

OBJECTIVE: To simultaneously explore associations between digital health, sociodemographic factors, and medical conditions on patient-centered communication (PCC). These are under-explored, yet important knowledge gaps to fill because perceived quality PCC may influence health information seeking behaviors and health outcomes. METHODS: Data from the 2019 Health Information National Trends Survey were analyzed. The primary outcome was PCC, which was the summed score of 7 PCC-related questions. Factors of interest included whether participants used electronic methods to communicate with health professionals, age, gender, race/ethnicity, education, feelings about household income, and history of medical conditions. Descriptive statistics and linear regressions were conducted. RESULTS: In the multivariate linear regression model, people aged 65-74 years compared with 18-34 year-olds, those with some college compared with college graduates, and those who felt they were living comfortably on their household income compared with all others reported higher PCC scores. People with a history of hypertension compared with those without reported higher PCC scores. CONCLUSION: Similar to past studies, sociodemographic factors were associated with PCC. A novel finding was that a history hypertension was associated with perceived quality of PCC. PRACTICE IMPLICATIONS: This research may inform methods to enhance communication between patients and clinicians.


Subject(s)
Digital Health , Hypertension , Humans , Sociodemographic Factors , Patient-Centered Care/methods , Communication , Information Seeking Behavior
7.
JAMA Netw Open ; 6(7): e2324395, 2023 07 03.
Article in English | MEDLINE | ID: mdl-37466938

ABSTRACT

Importance: Black men have a higher risk of prostate cancer compared with White men, but Black adults are underrepresented in online content about prostate cancer. Across racial groups, the internet is a popular source of health information; Black adults are more likely to trust online health information, yet have more medical mistrust than White adults. Objective: To evaluate the association between racial representation in online content about prostate cancer and trust in the content and identify factors that influence trust. Design, Setting, and Participants: A randomized clinical trial was conducted from August 18, 2021, to January 7, 2022, consisting of a 1-time online survey. Participants included US men and women aged 40 years and older. Data were analyzed from January 2022 to June 2023. Interventions: Participants were randomized to watch the same video script about either prostate cancer screening or clinical trials presented by 1 of 4 speakers: a Black physician, a Black patient, a White physician, or a White patient, followed by a questionnaire. Main Outcomes and Measures: The primary outcome was a published scale for trust in the information. χ2 tests and multivariable logistic regression were used to compare trust according to the video's speaker and topic. Results: Among 2904 participants, 1801 (62%) were men, and the median (IQR) age was 59 (47-69) years. Among 1703 Black adults, a greater proportion had high trust in videos with Black speakers vs White speakers (72.7% vs 64.3%; adjusted odds ratio [aOR], 1.62; 95% CI, 1.28-2.05; P < .001); less trust with patient vs physician presenter (64.6% vs 72.5%; aOR, 0.63; 95% CI, 0.49-0.80; P < .001) and about clinical trials vs screening (66.3% vs 70.7%; aOR, 0.78; 95% CI, 0.62-0.99; P = .04). Among White adults, a lower proportion had high trust in videos featuring a patient vs physician (72.0% vs 78.6%; aOR, 0.71; 95% CI, 0.54-0.95; P = .02) and clinical trials vs screening (71.4% vs 79.1%; aOR, 0.57; 95% CI, 0.42-0.76; P < .001), but no difference for Black vs White presenters (76.8% vs 73.7%; aOR, 1.11; 95% CI, 0.83-1.48; P = .49). Conclusions and Relevance: In this randomized clinical trial, prostate cancer information was considered more trustworthy when delivered by a physician, but racial concordance was significantly associated with trust only among Black adults. These results highlight the importance of physician participation and increasing racial diversity in public dissemination of health information and an ongoing need for public education about clinical trials. Trial Registration: ClinicalTrials.gov Identifier: NCT05886751.


Subject(s)
Prostatic Neoplasms , Adult , Male , Humans , Middle Aged , Aged , Trust , Early Detection of Cancer , Prostate-Specific Antigen , Racial Groups , Surveys and Questionnaires
8.
Urol Oncol ; 41(10): 430.e1-430.e7, 2023 10.
Article in English | MEDLINE | ID: mdl-37453812

ABSTRACT

OBJECTIVE: Shared decision-making (SDM) is an approach to patient-centered care that is strongly recommended when counseling patients for screening and treatment of prostate cancer. However, providers report lack of comfort with SDM and particularly in disparate populations. We report our experience designing and piloting an online workshop to educate practicing urologists on SDM in diverse populations. Our objective was to create a valued interactive SDM workshop to help urologists learn to lead SDM discussions with men form underserved populations. Therefore, we tested the hypothesis that urologists would agree or strongly agree that we met our learning objectives on postcourse survey. MATERIALS AND METHODS: With the support of the American Urologic Association, we developed a case-based workshop with interactive role-playing to demonstrate and teach integration of SDM into clinical care. Cases were centered around screening and treatment decisions for localized prostate cancer in diverse patients. Brief surveys were used to track success with learning objectives and urologists' satisfaction with the workshop. RESULTS: The session included 14 participants from 6 countries. A postworkshop survey indicated that 100% of respondents (8 of 8) "strongly agreed" that the activity met learning objectives, and 100% rated the session as "good" (1), "very good" (1), or "excellent" (6). Participants' knowledge also improved on shared decision-making concepts and the knowledge was maintained one month after the workshop. CONCLUSION: We successfully created and piloted an interactive online workshop to improve urologists' comfort using shared decision-making in caring for diverse patient populations. The course met its objectives and participant feedback for the course was positive. Sharing this process and framework for development of this intervention may inform future workshops that can be applied to medical students, residents, and providers.


Subject(s)
Decision Making , Prostatic Neoplasms , Male , Humans , Vulnerable Populations , Decision Making, Shared , Prostatic Neoplasms/diagnosis , Prostatic Neoplasms/therapy , Surveys and Questionnaires , Patient Participation
11.
J Cancer Educ ; 38(4): 1330-1337, 2023 08.
Article in English | MEDLINE | ID: mdl-36708498

ABSTRACT

Self-efficacy, or confidence, for being able to get cancer information may affect a person's understanding of cancer risk and subsequent cancer-related decisions such as screening, treatment, and genetic testing. In this study, we explored key correlates associated with self-efficacy for getting cancer information. We analyzed cross-sectional data from the 2018 Health Information National Trends Survey (HINTS 5, Cycle 2). There were 3504 responses in the full dataset; 2513 remained after eliminating respondents with incomplete data for all variables of interest. Self-efficacy for getting cancer information was assessed with the item, "Overall, how confident are you that you could get advice or information about cancer if you needed it?" First, we explored correlates associated with self-efficacy in getting cancer information including sociodemographic factors, patient-provider communication, and health-related self-efficacy in the full sample. Secondarily, we examined associations between self-efficacy to get cancer information and cancer information-seeking burden (e.g., difficulty understanding cancer information) in the subset of participants who reported ever looking for cancer-specific information. Descriptive statistics and logistic regressions were conducted. Asian race/ethnicity, higher perceived quality of patient-provider communication, and higher health-related self-efficacy were associated with higher odds of confidence about getting cancer information. In the subset of people who ever sought cancer-specific information, higher patient-provider communication scores, higher health-related self-efficacy, greater difficulty understanding information, greater concern about the quality of information, and greater frustration during the search were associated with higher self-efficacy for getting cancer information. Future research should evaluate strategies to improve cancer information seeking skills.


Subject(s)
Neoplasms , Self Efficacy , Humans , Cross-Sectional Studies , Communication , Surveys and Questionnaires
12.
Arthritis Care Res (Hoboken) ; 75(7): 1434-1442, 2023 07.
Article in English | MEDLINE | ID: mdl-36342382

ABSTRACT

OBJECTIVE: Substantial disparities exist in clinical trial participation, which is problematic in diseases such as lupus that disproportionately affect racial/ethnic minority populations. Our objective was to examine the effectiveness of an online educational course aiming to train medical providers to refer Black and Latino patients to lupus clinical trials (LCTs). METHODS: The American College of Rheumatology's Materials to Increase Minority Involvement in Clinical Trials (MIMICT) study used an online, randomized, 2-group, pretest/posttest design with medical and nursing providers of multiple specialties. We exposed intervention group participants to an education course, while the control group participants received no intervention. Controlling for the effects of participant characteristics, including specialty, and professional experience with lupus, we modeled relationships among exposure to the education course and changes in knowledge, attitudes, self-efficacy, and intentions to refer Black and Latino patients to LCTs. We also examined education course satisfaction. RESULTS: Compared to the control group, the intervention group had significantly higher posttest scores for knowledge, self-efficacy, and intentions to refer Black and Latino patients to LCTs. Both medical and nursing trained intervention group participants had significantly higher mean posttest scores for knowledge and intentions to refer compared to the medical and nursing trained control group participants. Attitude was insignificant in analysis. The online education course, which received a favorable summary score, indicated that satisfaction and intentions to refer were strongly and positively correlated. CONCLUSION: The MIMICT education course is an effective method to educate medical providers about LCTs and to improve their intentions to refer Black and Latino patients.


Subject(s)
Ethnicity , Healthcare Disparities , Lupus Erythematosus, Systemic , Minority Groups , Patient Selection , Humans , Hispanic or Latino , Racial Groups , United States , Clinical Trials as Topic , Black or African American
13.
Ethn Dis ; 33(4): 194-199, 2023 Sep.
Article in English | MEDLINE | ID: mdl-38854410

ABSTRACT

Introduction/Purpose: Efforts to improve chronic disease outcomes among US adults highlight families, particularly support from families, as a key aspect of disease prevention and management. To date, however, an overwhelming focus on individual-level outcomes and unidirectional support (eg, from a family caregiver to an identified care recipient) belies the existence of co-occurring health concerns and interdependent care. There are increasing calls for more sophisticated and intensive family health interventions that better integrate family-level factors, processes, and outcomes to provide comprehensive family support services in health care and community-based settings. Methods: This commentary provides key considerations for advancing this work while centering family health equity and families themselves in health initiatives. Results: Several critical barriers are identified and discussed. For example, a narrow focus on family and inadequate measures of family-level disease burden make it challenging to understand how the disproportionate burden of chronic disease observed among individuals of lower socioeconomic status and certain racial and ethnic groups compounds and complicates family health experiences. In addition, limited attention to the interaction between individuals, families, and broader sociocultural factors that influence family resources and constraints, such as racism, hamper program design, implementation, and evaluation. Conclusion: To center families in efforts to reduce chronic disease disparities, it is necessary to move beyond superficial attention to the complexity of disease prevention and management within the family context. This commentary serves to enhance understanding of important drivers of family-level chronic disease outcomes, while providing important considerations for advancing research and practice.


Subject(s)
Family Health , Health Equity , Humans , Chronic Disease/prevention & control , Family Health/ethnology , United States , Disease Management , Family
14.
JAMIA Open ; 5(4): ooac092, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36325306

ABSTRACT

Electronic health records (EHRs) are often used for recruitment into research studies, as they efficiently facilitate targeted outreach. While studies increasingly are reaching out to potential participants through the EHR patient portal, there is little available information about which approaches are most effective. We surveyed all investigators at one academic medical center who had used the Epic MyChart patient portal for recruitment. We found that messages were typically adapted for a large group, but not tailored further for individual subgroups. The vast majority of studies sent a message only once. Recruitment costs were modest, averaging $431/study. The results show some promise for recruiting through the patient portal but also identified ways in which messages could be optimized.

15.
JMIR Form Res ; 6(10): e40164, 2022 Oct 12.
Article in English | MEDLINE | ID: mdl-36222807

ABSTRACT

BACKGROUND: Social determinants of health (SDOH) refer to the social, economic, and psychosocial conditions that influence health. Lower levels of SDOH factors including income, education, and employment are associated with a higher prevalence of diabetes, poorer glycemic control, and increased diabetes-related mortality. Few studies have conducted a comprehensive evaluation of multiple SDOH factors in a population with type 2 diabetes mellitus (T2DM). OBJECTIVE: This study aimed to identify the range of SDOH challenges-including diabetes-related distress-that impact patients with insulin-dependent diabetes at an urban safety-net clinic using the 5-domain SDOH framework developed by the Healthy People 2020 initiative. METHODS: The pilot study used a cross-sectional, mixed methods approach. Participants were recruited from 3 programs within a general internal medicine clinic that provides ambulatory care for patients with uncontrolled T2DM. We administered an investigator-developed SDOH survey based on the Healthy People 2020 framework and the validated Diabetes Distress Scale (DDS), which assesses 4 domains of diabetes-related distress. One-on-one interviews were conducted to gain in-depth information about challenges. RESULTS: In total, 57 participants had an average hemoglobin A1c level of 11.0% (SD 2.6%). Overall, 92% (52/57) of participants had a barrier in at least one SDOH domain. SDOH challenges were most commonly reported in the domain of Health and Health Care (84%, 48/57), followed by Economic Stability (54%, n=31), Neighborhood and Built Environment (53%, n=30), Education and Health Literacy (47%, n=27), and Social and Community context (37%, n=21). The mean overall DDS score was 2.09 (SD 0.84), where scores of ≥2 indicate distress. Further, 79% (45/57) of participants had at least moderate diabetes-related distress in one of the 4 DDS domains. General themes that emerged from participant interviews included job interference with healthy behaviors, concerns about burdening others, challenges communicating with providers, and difficulty getting appointments in a timely manner. CONCLUSIONS: We found high levels of SDOH barriers across all 5 domains of the Center for Disease Control and Prevention's Healthy People 2020 framework, including significant levels of diabetes-related distress. Future programs to address SDOH barriers in patients with uncontrolled insulin-dependent diabetes should consider screening for and focusing on a wide range of challenges.

16.
Health Equity ; 6(1): 527-532, 2022.
Article in English | MEDLINE | ID: mdl-36186618

ABSTRACT

Introduction: There are significant and pervasive disparities in police violence and discrimination toward African Americans/Blacks. It is possible that these disparities may lead to heightened vulnerability for poor mental health outcomes. The purpose of this study was to ascertain the associations between experiences of police discrimination and depressive symptoms in a community-based sample of African American/Black women. Methods: We performed a cross-sectional multivariable regression analysis using data from the Intergenerational Impact of Genetic and Psychological Factors on Blood Pressure Study that were collected over a 4-year period from September 2015 to June 2019. Depressive symptoms were assessed using 21 items from the Beck Depression Inventory. Police discrimination was assessed by questionnaires ascertaining experiences of discrimination by police; harassment by police or security guards; and experiences of being unfairly stopped, searched, threatened, or abused by police. Results: The analytical sample included 214 participants. Nineteen percent of participants indicated that they believed they experienced harassment from security guards/police due to their race/ethnicity. Fourteen percent of participants indicated that they had been unfairly stopped, searched, questioned, or abused by police. Police harassment was associated with higher depressive symptoms by an average of 4.48 (standard error [SE]=1.35, p<0.001). African American/Black women who were unfairly stopped, searched, or abused by police had higher depressive symptoms by an average of 4.54 (SE=1.57, p<0.01). Conclusion: African American/Black women who experienced police discrimination experienced higher prevalence of depressive symptoms. There is an urgent need for reliable population-level data on police mistreatment and interventions at the individual, community, and societal levels.

17.
JMIR Res Protoc ; 11(9): e41451, 2022 Sep 02.
Article in English | MEDLINE | ID: mdl-36053558

ABSTRACT

BACKGROUND: Surgery is the most common treatment for localized small kidney masses (SKMs) up to 4 cm, despite a lack of evidence for improved overall survival. Nonsurgical management options are gaining recognition, as evidence supports the indolence of most SKMs. Decision aids (DAs) have been shown to improve patient comprehension of the trade-offs of treatment options and overall decision quality, and may improve consideration of all major options according to individual health priorities and preferences. OBJECTIVE: This pilot randomized controlled trial (RCT) primarily aims to evaluate the impact of a new web-based DA on treatment decisions for patients with SKM; that is, selection of surgical versus nonsurgical treatment options. Secondary objectives include an assessment of decision-making outcomes: decisional conflict, decision satisfaction, and an understanding of individual preferences for treatment that incorporate the trade-offs associated with surgical versus nonsurgical interventions. METHODS: Three phases comprise the construction and evaluation of a new web-based DA on SKM treatment. In phase 1, this DA was developed in print format through a multidisciplinary design committee incorporating patient focus groups. Phase 2 was an observational study on patient knowledge and decision-making measures after randomization to receive the printed DA or institutional educational materials, which identified further educational needs applied to a web-based DA. Phase 3 will preliminarily evaluate the web-based DA: in a pilot RCT, 50 adults diagnosed with SKMs will receive the web-based DA or an existing web-based institutional website at urology clinics at a large academic medical center. The web-based DA applies risk communication and information about diagnosis and treatment options, elicits preferences regarding treatment options, and provides a set of options to consider with their doctor based on a decision-analytic model of benefits/harm analysis that accounts for comorbidity, age group, and tumor features. Questionnaires and treatment decision data will be gathered before and after viewing the educational material. RESULTS: This phase will consist of a pilot RCT from August 2022 to January 2023 to establish feasibility and preliminarily evaluate decision outcomes. Previous study phases from 2018 to 2020 supported the feasibility of providing the printed DA in urology clinics before clinical consultation and demonstrated increased patient knowledge about the diagnosis and treatment options and greater likelihood of favoring nonsurgical treatment just before consultation. This study was funded by the National Cancer Institute. Recruitment will begin in August 2022. CONCLUSIONS: A web-based DA has been designed to address educational needs for patients making treatment decisions for SKM, accounting for comorbidities and treatment-related benefits and risks. Outcomes from the pilot trial will evaluate the potential of a web-based DA in personalizing treatment decisions and in helping patients weigh attributes of surgical versus nonsurgical treatment options for their SKMs. TRIAL REGISTRATION: ClinicalTrials.gov NCT05387863; https://clinicaltrials.gov/ct2/show/NCT05387863. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/41451.

18.
Digit Health ; 8: 20552076221118822, 2022.
Article in English | MEDLINE | ID: mdl-36046636

ABSTRACT

Objective: Social media use has grown over time. However, it is unclear how people with a self-reported history of cardiovascular disease or cardiovascular disease-related risk factors such as diabetes and hypertension use social media. Methods: Data from the 2020 Health Information National Trends Survey (HINTS 5, Cycle 4) were analyzed (N = 3865). Only respondents with complete data for all variables of interest were included in the analyses, resulting in 306 respondents with a heart condition, 1291 with hypertension, and 608 with diabetes. We explored associations between two dependent variables: (1) participated in an online forum or support group and (2) watched a health-related video on YouTube, and sociodemographic factors and patient-provider communication. Analyses were conducted separately by medical condition. Odds ratios, 95% confidence intervals, and p-values were calculated. Results: In respondents with a heart condition, hypertension, or diabetes, 5.4%, 8.4%, and 10.3% had participated in an online support group and 29.6%, 40.4%, and 36.6% had watched health-related videos on YouTube, respectively. Univariately, the odds of using online support groups was associated with younger age (vs. > = 65) in people with a heart condition and hypertension, but not diabetes. Regarding YouTube, younger age was associated with watching health-related videos across all three medical conditions, with additional gender and education associations observed in those with hypertension. There were no associations between social media use and patient-provider communication. Conclusions: These findings may inform the selection of social media platforms for behavioral interventions depending on the intended patient population and goals (e.g. social support vs. video-based health education).

19.
J Am Coll Radiol ; 19(8): 935-944, 2022 08.
Article in English | MEDLINE | ID: mdl-35714722

ABSTRACT

OBJECTIVE: To develop and pilot test a patient decision aid (DA) describing small kidney masses and risks and benefits of treatment for the masses. METHODS: An expert committee iteratively designed a small kidney mass DA, incorporating evidence-based risk communication and informational needs for treatment options and shared decision-making. After literature review and drafting content with the feedback of urologists, radiologists, and an internist, a rapid qualitative assessment was conducted using two patient focus groups to inform user-centered design. In a pilot study, 30 patients were randomized at the initial urologic consultation to receive the DA or existing institutional patient educational material (PEM). Preconsultation questionnaires captured patient knowledge and shared decision-making preferences. After review of the DA and subsequent clinician consultation, patients completed questionnaires on discussion content and satisfaction. Proportions between arms were compared using Fisher exact tests, and decision measures were compared using Mann-Whitney tests. RESULTS: Patient informational needs included risk of tumor growth during active surveillance and ablation, significance of comorbidities, and posttreatment recovery. For the DA, 84% of patients viewed all content, and mean viewing time was 20 min. Significant improvements in knowledge about small mass risks and treatments were observed (mean total scores: 52.6% DA versus 22.3% PEM, P < .001). DA use also increased the proportion of patients discussing ablation (66.7% DA versus 18.2% PEM, P = .02). Decision satisfaction measures were similar in both arms. DISCUSSION: Patients receiving a small kidney mass DA are likely to gain knowledge and preparedness to discuss all treatment options over standard educational materials.


Subject(s)
Decision Support Techniques , Patient Participation , Decision Making , Humans , Kidney , Pilot Projects , Surveys and Questionnaires
20.
BMC Med Res Methodol ; 22(1): 180, 2022 06 28.
Article in English | MEDLINE | ID: mdl-35764920

ABSTRACT

BACKGROUND: The need to engage adults, age 65 and older, in clinical trials of conditions typical in older populations, (e.g. hypertension, diabetes mellitus, Alzheimer's disease and related dementia) is exponentially increasing. Older adults have been markedly underrepresented in clinical trials, often exacerbated by exclusionary study criteria as well as functional dependencies that preclude participation. Such dependencies may further exacerbate communication challenges. Consequently, the evidence of what works in subject recruitment is less generalizable to older populations, even more so for those from racial and ethnic minority and low-income communities. METHODS: To support capacity of research staff, we developed a virtual, three station simulation (Group Objective Structured Clinical Experience-GOSCE) to teach research staff communication skills. This 2-h course included a discussion of challenges in recruiting older adults; skills practice with Standardized Participants (SPs) and faculty observer who provided immediate feedback; and debrief to highlight best practices. Each learner had opportunities for active learning and observational learning. Learners completed a retrospective pre-post survey about the experience. SP completed an 11-item communication checklist evaluating the learner on a series of established behaviorally anchored communication skills (29). RESULTS: In the research staff survey, 92% reported the overall activity taught them something new; 98% reported it provided valuable feedback; 100% said they would like to participate again. In the SP evaluation there was significant variation: the percent well-done of items by case ranged from 25-85%. CONCLUSIONS: Results from this pilot suggest that GOSCEs are a (1) acceptable; (2) low cost; and (3) differentiating mechanism for training and assessing research staff in communication skills and structural competency necessary for participant research recruitment.


Subject(s)
Clinical Competence , Physician-Patient Relations , Aged , Ethnicity , Humans , Minority Groups , Retrospective Studies
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