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1.
Eur Urol Oncol ; 2024 May 17.
Article in English | MEDLINE | ID: mdl-38762369

ABSTRACT

BACKGROUND: Prostate cancer (PCa) diagnosis and treatment can have a significant negative impact on sexual health, affecting patients and their partners; however, the impact on partners is insufficiently addressed in current practice. OBJECTIVE: We describe the development and validation of an instrument to measure sexual health in female partners of patients with PCa. DESIGN, SETTING, AND PARTICIPANTS: Questions assessing sexual health were developed through a literature review, two qualitative studies, and an expert consensus process. Candidate survey items were tested through cognitive interviews and used to iteratively refine the questionnaire. INTERVENTION: The final questionnaire was tested in a validation study among 200 female partners. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: We performed an exploratory factor analysis, followed by an analysis for internal validity, test-retest reliability, and convergent and discriminant validity. RESULTS AND LIMITATIONS: An initial set of 32 items was developed and refined through cognitive interviews. The resulting 27-item questionnaire was tested among 200 female partners of patients with PCa from across the USA. The exploratory factor analysis eliminated eight items and revealed seven key factors: (1) distress/satisfaction, (2) loss of connection as a couple, (3) active communication, (4) discomfort with communication, (5) frustration with sexual counseling, (6) expansion of sexual repertoire, and (7) nonpenetrative sexual activity. The overall scale demonstrated strong internal consistency (ordinal alpha 0.94) and test-retest reliability (0.89). Strengths of the study include development and evaluation of the first questionnaire to evaluate sexual quality of life among female partners of patients with PCa. However, additional work is needed to assess sexual health and quality of life among male and nonbinary partners. CONCLUSIONS: We developed a new instrument, the Sexual Concerns In Partners of Patients with Prostate cancer (SCIPPP-F), and found it to be valid in a diverse sample of female partners across the USA. PATIENT SUMMARY: Our new instrument can be used to characterize sexual health among female partners of patients with prostate cancer.

2.
JCO Precis Oncol ; 8: e2300552, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38452310

ABSTRACT

PURPOSE: Germline genetic testing (GT) is important for prostate cancer (PCA) management, clinical trial eligibility, and hereditary cancer risk. However, GT is underutilized and there is a shortage of genetic counselors. To address these gaps, a patient-driven, pretest genetic education webtool was designed and studied compared with traditional genetic counseling (GC) to inform strategies for expanding access to genetic services. METHODS: Technology-enhanced acceleration of germline evaluation for therapy (TARGET) was a multicenter, noninferiority, randomized trial (ClinicalTrials.gov identifier: NCT04447703) comparing a nine-module patient-driven genetic education webtool versus pretest GC. Participants completed surveys measuring decisional conflict, satisfaction, and attitudes toward GT at baseline, after pretest education/counseling, and after GT result disclosure. The primary end point was noninferiority in reducing decisional conflict between webtool and GC using the validated Decisional Conflict Scale. Mixed-effects regression modeling was used to compare decisional conflict between groups. Participants opting for GT received a 51-gene panel, with results delivered to participants and their providers. RESULTS: The analytic data set includes primary outcome data from 315 participants (GC [n = 162] and webtool [n = 153]). Mean difference in decisional conflict score changes between groups was -0.04 (one-sided 95% CI, -∞ to 2.54; P = .01), suggesting the patient-driven webtool was noninferior to GC. Overall, 145 (89.5%) GC and 120 (78.4%) in the webtool arm underwent GT, with pathogenic variants in 15.8% (8.7% in PCA genes). Satisfaction did not differ significantly between arms; knowledge of cancer genetics was higher but attitudes toward GT were less favorable in the webtool arm. CONCLUSION: The results of the TARGET study support the use of patient-driven digital webtools for expanding access to pretest genetic education for PCA GT. Further studies to optimize patient experience and evaluate them in diverse patient populations are warranted.


Subject(s)
Genetic Counseling , Prostatic Neoplasms , Humans , Male , Genetic Counseling/methods , Genetic Testing , Germ Cells , Health Knowledge, Attitudes, Practice , Prostatic Neoplasms/diagnosis , Prostatic Neoplasms/genetics , Prostatic Neoplasms/therapy
3.
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
4.
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
5.
Urology ; 184: 19-25, 2024 02.
Article in English | MEDLINE | ID: mdl-38160766

ABSTRACT

OBJECTIVE: To characterize unmet sexual health resource needs and preferences for interventions to address unmet needs among female partners of patients with prostate cancer (PCa), given the significant negative impact of PCa on the sexual health of partners. METHODS: We conducted an exploratory sequential mixed methods study of female partners recruited from multiple U.S. clinical locations, websites, and support groups for caregivers. We first conducted semistructured in-depth interviews. Qualitative results informed development of a cross-sectional survey, which was administered to a larger sample of partners. RESULTS: Overall, 12 and 200 female partners participated in the qualitative and quantitative portions of the study. Major emergent themes from interviews were the benefits and drawbacks of technology-based interventions, the importance of sexual health resources throughout the PCa journey, and a desire for sexual health support groups that include partners. In the survey, the most common sexual health topics that partners wanted more information about were male libido problems (30.0%), erectile dysfunction (26.5%), and female libido and arousal problems (24.5%). Additionally, 41.5% wanted more information about sexual health websites, 35.0% about partners-only support groups, 29.5% about support groups for couples, and 23.5% about sexual medicine specialists. CONCLUSIONS: To our knowledge, this is the largest study to date on female partners' unmet sexual health resource needs and preferences for sexual health interventions. Partners prefer technology-based interventions, desire sexual health-focused support groups, and want more information about a variety of sexual issues and specialists who treat them.


Subject(s)
Prostatic Neoplasms , Sexual Health , Humans , Male , Cross-Sectional Studies , Sexual Behavior , Prostatic Neoplasms/therapy , Health Resources
6.
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
7.
J Sex Med ; 20(5): 651-660, 2023 04 27.
Article in English | MEDLINE | ID: mdl-36941211

ABSTRACT

BACKGROUND: Prostate cancer (PCa) and its treatments can have a significant negative impact on the sexual health of survivors and couples, but few studies have specifically examined the impact of PCa-related sexual dysfunction on female partners of survivors. AIM: Our objective was to perform a qualitative study to comprehensively characterize female partners' perceptions of the implications of PCa on their sex lives, as well as partners' sexual health concerns and unmet needs. METHODS: We conducted semi-structured telephone interviews about sexual health and unmet needs with female partners of PCa survivors recruited from multiple clinical locations and support groups for PCa caregivers from September 2021 to March 2022. Interviews were audio-recorded, transcribed verbatim, and independently coded. Participants were recruited until thematic saturation was achieved. OUTCOMES: Outcomes of this study were female partner sexual health concerns and unmet needs. RESULTS: Among 12 participants, the median age was 65 (range 53 to 81) years, 9 were White, the median time since their partner's PCa diagnosis was 2.25 years (range 11 months to 20 years), and a majority reported that their partner had undergone radical prostatectomy, radiation, and/or hormonal therapy. Major emergent themes pertained to the significant impact of age- and PCa-related sexual dysfunction on female sexual quality of life, the dyadic nature of sexual dysfunction and recovery, the role of the partner in coping with and adjusting to sexual dysfunction, difficulties communicating about sexual dysfunction in an intimate relationship, a lack of physician-led sexual health counseling and support, and the benefit of peer interactions and proactive information seeking in addressing unmet sexual health needs. CLINICAL IMPLICATIONS: Future efforts should continue to explore the impact of PCa on partner sexual health and address unmet needs through sexual health education and support. STRENGTHS AND LIMITATIONS: In this study, we identified female partners' sexual health concerns both related to and independent of PCa survivor sexual health. Limitations include exclusion of male partners of survivors and potential responder bias, as partners who agreed to participate may have experienced more sexual health concerns. CONCLUSION: We found that female partners experience PCa-related sexual dysfunction as a couple's disease, grief due to age- and PCa-related sexual losses, and a lack of physician-led sexual health counseling and information. Our results highlight the importance of including partners of PCa survivors in the sexual recovery process and of developing sexual care programs to address partners' unmet sexual health needs.


Subject(s)
Cancer Survivors , Prostatic Neoplasms , Sexual Dysfunction, Physiological , Sexual Health , Humans , Male , Child, Preschool , Child , Cancer Survivors/psychology , Prostate , Quality of Life , Sexual Partners/psychology , Survivors/psychology , Sexual Dysfunction, Physiological/etiology , Sexual Dysfunction, Physiological/psychology , Prostatic Neoplasms/surgery
8.
Prostate Cancer Prostatic Dis ; 26(4): 772-777, 2023 Dec.
Article in English | MEDLINE | ID: mdl-36681741

ABSTRACT

BACKGROUND: Podcasts, or episodic digital audio recordings, represent a novel way to reach large audiences for public education. Genetic evaluation has important implications for prostate cancer (PCa) care but is underutilized. We created a series of five podcasts about PCa genetics and tested their usefulness in raising awareness and providing education to lay audiences. METHODS: We recruited 157 men and women from the general public and 100 patients with PCa from across the U.S., who listened to a podcast and completed an online survey. The primary outcome was the perceived usefulness of the podcast (score ≥5 on a published 7-point Likert scale). Secondary outcomes were relevance to informational needs, satisfaction and ease of use, as well as genetic knowledge and attitudes toward genetic testing after listening to the podcasts. RESULTS: The podcasts were associated with high mean scores for perceived usefulness (5.6/7), relevance to informational needs (5.6/7), satisfaction (5.8/7), and ease of use (5.9/7). After listening to the podcasts, 80-100% correctly answered most key knowledge questions about PCa genetics, and 85% had a positive attitude toward genetic testing. On multivariable analysis, the perceived usefulness of the podcasts was higher among Black/Hispanic adults (p = 0.05) and those with a family history of PCa (p = 0.01). CONCLUSIONS: A podcast series on PCa genetics was perceived as useful and associated with high rates of knowledge for patients with PCa and the general public. Podcasts represent a promising new educational tool to raise awareness about PCa genetic evaluation, particularly for high-risk groups.


Subject(s)
Prostatic Neoplasms , Male , Adult , Humans , Prostatic Neoplasms/diagnosis , Prostatic Neoplasms/epidemiology , Prostatic Neoplasms/genetics , Surveys and Questionnaires , Educational Status , Medical History Taking
9.
Prostate Cancer Prostatic Dis ; 26(1): 210-212, 2023 03.
Article in English | MEDLINE | ID: mdl-36543892

ABSTRACT

BACKGROUND: The prevalence of sleep disturbances among prostate cancer (PCa) survivors, and extent of urologist involvement in sleep care are not well-studied. METHODS: PCa survivors (n = 167) and urologists (n = 145) were surveyed about sleep disturbances and survivorship care practices. RESULTS: Most PCa survivors had sleep disturbances, including 50.9% with poor sleep quality, 18.0% with clinical/severe insomnia, and 36.5% at high-risk for sleep apnea. Few urologists routinely screened for sleep disturbances, as recommended in national cancer survivorship guidelines. CONCLUSIONS: Optimal PCa survivorship care should incorporate screening for sleep disturbances, addressing comorbid factors affecting sleep and referring to sleep medicine when appropriate.


Subject(s)
Cancer Survivors , Prostatic Neoplasms , Sleep Wake Disorders , Male , Humans , Prostatic Neoplasms/complications , Prostatic Neoplasms/epidemiology , Survivorship , Prostate , Sleep , Sleep Wake Disorders/epidemiology , Sleep Wake Disorders/etiology , Quality of Life
10.
J Sex Med ; 19(12): 1797-1803, 2022 12.
Article in English | MEDLINE | ID: mdl-36202730

ABSTRACT

BACKGROUND: Prostate cancer (PCa) and its treatment can have significant and pervasive sexual side effects for patients and their partners; however, partner needs are not well understood, and most resources do not incorporate partner priorities. AIM: Our objective was to perform a qualitative study to identify unmet sexual needs of patients and female partners after PCa diagnosis. METHODS: We conducted a qualitative study of posts to the Inspire Us TOO Prostate Cancer Online Support and Discussion Community. Overall, 6,193 posts were identified in the Sexual Health & Intimacy forum of the community, of which 661 posts were from female authors. A random sample of 10% (n = 66) of posts from female partners and an equal number of randomly selected posts from male patients were analyzed. OUTCOMES: We assessed sexual health themes among patients and female partners. RESULTS: Multiple themes emerged that were unique to female partners of PCa survivors. These included expanding the sexual repertoire, feeling invisible, contextualizing sexual intimacy within the broader picture of survival, and addressing relationship concerns. Patients and their partners also shared common sexual health themes, including coming to terms with changes in sexual function and frustration with clinicians. Both patients and their partners use online health communities to get support and share their experiences with sexual recovery and use of sexual aids. Psychosocial treatments were infrequently mentioned, and may be particularly helpful to address partner concerns. CLINICAL IMPLICATIONS: A common concern for couples was not receiving sufficient information from healthcare providers regarding sexual side effects from PCa and its treatment. STRENGTHS AND LIMITATIONS: Strengths of the study include leveraging a unique data source to address an understudied topic of sexual health concerns among partners after PCa diagnosis. However, members of an online community may not be representative of all couples facing PCa. Also, this analysis is limited to female partners of patients with PCa, and further study is underway to examine the sexual health needs among gay and bisexual couples. CONCLUSION: Both patients and female partners have many unmet sexual health needs during PCa survivorship, and designing interventions to incorporate partner perspectives may improve the management of sexual side effects of PCa for couples. Li R, Wittmann D, Nelson CJ, et al. Unmet Sexual Health Needs of Patients and Female Partners Following Diagnosis and Treatment for Prostate Cancer. J Sex Med 2022;19:1797-1803.


Subject(s)
Prostatic Neoplasms , Sexual Health , Humans , Male , Prostatic Neoplasms/diagnosis , Prostatic Neoplasms/therapy , Prostatic Neoplasms/psychology , Sexual Partners/psychology , Prostatectomy/adverse effects , Sexual Behavior/psychology
12.
Prostate Cancer Prostatic Dis ; 25(3): 444-452, 2022 09.
Article in English | MEDLINE | ID: mdl-35790788

ABSTRACT

BACKGROUND: Plant-based diets are increasingly popular and have many well-established benefits for health and environmental sustainability. Our objective was to perform a systematic review of plant-based diets and prostate cancer. METHODS: We performed a systematic database and citation search in February 2022. Studies were included if they reported primary data on plant-based dietary patterns (i.e., vegan, vegetarian, plant-based) and incidence among at-risk men for prostate cancer, or oncologic, general health/nutrition, or quality of life outcomes among patients with prostate cancer or caregivers. RESULTS: A total of 32 publications were eligible for the qualitative synthesis, representing 5 interventional and 11 observational studies. Interventional studies primarily focused on lifestyle modification including plant-based diets for men on active surveillance for localized prostate cancer or with biochemical recurrence after treatment, showing improvements in short-term oncologic outcomes alongside improvements in general health and nutrition. Observational studies primarily focused on prostate cancer risk, showing either protective or null associations for plant-based dietary patterns. Studies of the vegan diet consistently showed favorable associations with risk and/or outcomes. Gaps in the current literature include impact for long-term disease-specific outcomes. CONCLUSIONS: Interventional studies showed generally favorable results of lifestyle modifications incorporating a plant-based diet with prostate cancer outcomes as well as improvements in nutrition and general health. Observational studies demonstrated either a lower risk of prostate cancer or no significant difference. These results are encouraging in light of the many benefits of plant-based diets for overall health, as well as environmental sustainability and animal welfare.


Subject(s)
Prostatic Neoplasms , Diet , Diet, Vegan , Humans , Incidence , Life Style , Male , Prostatic Neoplasms/epidemiology , Quality of Life
13.
Contemp Clin Trials ; 119: 106821, 2022 08.
Article in English | MEDLINE | ID: mdl-35710085

ABSTRACT

BACKGROUND: Germline testing has an increasingly important role in prostate cancer care. However, a relative shortage of genetic counselors necessitates alternate strategies for delivery of pre-test education for germline testing. This study, funded by the Prostate Cancer Foundation, seeks to address the need for novel methods of delivery of pre-test germline education beyond traditional germline counseling to facilitate informed patient decision-making for germline testing. METHODS: This is a two-armed randomized controlled trial (RCT) with a target enrollment of 173 participants with prostate cancer per study arm (total anticipated n = 346). Patients who meet criteria for germline testing based on tumor features, family history or Ashkenazi Jewish ancestry are being recruited from 5 US sites including academic, private practice and Veterans healthcare settings. Consenting participants are randomized to the interactive pretest webtool or germline counseling with assessment of key patient-reported outcomes involved in informed decision-making for germline testing. RESULTS: Participants complete surveys at baseline, after pretest education/counseling, and following disclosure of germline results. The primary outcome of the study is decisional conflict for germline testing. Secondary outcomes include genetic knowledge, satisfaction, uptake of germline testing, and understanding of results. CONCLUSION: Our hypothesis is that the web-based genetic education tool is non-inferior to traditional genetic counseling regarding key patient-reported outcomes involved in informed decision-making for germline testing. If proven, the results would support deploying the webtool across various practice settings to facilitate pre-test genetic education for individuals with prostate cancer and developing collaborative care strategies with genetic counseling. CLINICALTRIALS: gov Identifier: NCT04447703.


Subject(s)
Genetic Counseling , Prostatic Neoplasms , Acceleration , Genetic Testing , Germ Cells , Humans , Male , Technology
14.
J Urol ; 207(3): 559-564, 2022 03.
Article in English | MEDLINE | ID: mdl-35114821

ABSTRACT

PURPOSE: Black men have the highest incidence and mortality from prostate cancer (PCa) and lower quality of life compared to other U.S. racial groups. Additionally, more Latinx men are diagnosed with advanced disease and fewer receive guideline-concordant care. As many men seek medical information online, high-quality information targeting diverse populations may mitigate disparities. We examined racial/ethnic representation and information quality in online PCa content. MATERIALS AND METHODS: We retrieved 150 websites and 150 videos about "prostate cancer" using the most widely used search engine (Google) and social network (YouTube). We assessed quality of health information, reading level, perceived race/ethnicity of people featured in the content and discussion of racial/ethnic disparities. RESULTS: Among 81 websites and 127 videos featuring people, 37% and 24% had perceived Black representation, and racial/ethnic disparities were discussed in 27% and 17%, respectively. Among 1,526 people featured, 9% and 1% were perceived as Black and Latinx, respectively. No content with Black or Latinx representation was high quality, understandable, actionable and at the recommended reading level. CONCLUSIONS: Black and Latinx adults are underrepresented in online PCa content. Online media have significant potential for public education and combating health disparities. However, most PCa content lacks diversity and is not readily understandable.


Subject(s)
Black or African American/statistics & numerical data , Consumer Health Information , Hispanic or Latino/statistics & numerical data , Internet , Prostatic Neoplasms/ethnology , Humans , Male , United States
15.
JMIR Cancer ; 7(3): e27063, 2021 Sep 20.
Article in English | MEDLINE | ID: mdl-34542414

ABSTRACT

BACKGROUND: Genetic testing, particularly for BRCA1/2, is increasingly important in prostate cancer (PCa) care, with impact on PCa management and hereditary cancer risk. However, the extent of public awareness and online discourse on social media is unknown, and presents opportunities to identify gaps and enhance population awareness and uptake of advances in PCa precision medicine. OBJECTIVE: The objective of this study was to characterize activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and genetic testing for PCa compared with breast cancer, which has a long history of public awareness, advocacy, and prominent social media presence. METHODS: The Symplur Signals online analytics platform was used to obtain metrics for tweets about (1) #BRCA and #breastcancer, (2) #BRCA and #prostatecancer, (3) #genetictesting and #breastcancer, and (4) #genetictesting and #prostatecancer from 2016 to 2020. We examined the total number of tweets, users, and reach for each hashtag, and performed content analysis for a subset of tweets. Facebook and YouTube were queried using analogous search terms, and engagement metrics were calculated. RESULTS: During a 5-year period, there were 10,005 tweets for #BRCA and #breastcancer, versus 1008 tweets about #BRCA and #prostatecancer. There were also more tweets about #genetictesting and #breastcancer (n=1748), compared with #genetic testing and #prostatecancer (n=328). Tweets about genetic testing (12,921,954) and BRCA (75,724,795) in breast cancer also had substantially greater reach than those about PCa (1,463,777 and 4,849,905, respectively). Facebook groups and pages regarding PCa and BRCA/genetic testing had fewer average members, new members, and new posts, as well as fewer likes and followers, compared with breast cancer. Facebook videos had more engagement than YouTube videos across both PCa and breast cancer content. CONCLUSIONS: There is substantially less social media engagement about BRCA and genetic testing in PCa compared with breast cancer. This landscape analysis provides insights into strategies for leveraging social media platforms to increase public awareness about PCa germline testing, including use of Facebook to share video content and Twitter for discussions with health professionals.

16.
Eur Urol Open Sci ; 25: 1-4, 2021 Mar.
Article in English | MEDLINE | ID: mdl-34337497

ABSTRACT

The COVID-19 pandemic dramatically impacted society and health care on a global scale. To capture the lived experience of patients with prostate cancer and family members/caregivers during the COVID-19 pandemic, we performed a mixed-methods study of posts to two online networks. We compared all 6187 posts to the Inspire Us TOO Prostate Cancer online support and discussion community from December 2019 to April 2020, to 6926 posts from the same interval in 2019, applying a linguistic ethnography method. A similar analysis was performed using data from the Reddit discussion website (246 posts from 2019 and 260 posts from 2020). Manual qualitative analysis was performed for all 207 posts that mentioned COVID, COVID-19, or coronavirus. The computational linguistic ethnography analysis revealed a more collective tone in 2020, with increased concern about death. Our qualitative analysis showed that patients with prostate cancer and caregivers have concern about a variety of COVID-19-related impacts on care, including delays in testing and treatment. There was also substantial concern about the impact of having cancer on COVID-19 risk and access to COVID-19 care. Misinformation was present in 7% of COVID-19-related posts. In conclusion, online networks provide a useful source of real-world data from patients and their families, and analysis of these data highlighted a substantial impact of COVID-19 on prostate cancer care. PATIENT SUMMARY: We performed a study of online posts by patients with prostate cancer and their families on their perspectives about COVID-19. Concerns about the impact of COVID-19 included worry about delays in testing and treatment. Our research also revealed misinformation in COVID-19-related posts.

17.
Prostate ; 81(11): 754-764, 2021 08.
Article in English | MEDLINE | ID: mdl-34057231

ABSTRACT

BACKGROUND: Genetic counseling and germline testing have an increasingly important role for patients with prostate cancer (PCa); however, recent data suggests they are underutilized. Our objective was to perform a qualitative study of the barriers and facilitators of germline genetic evaluation among physicians who manage PCa. METHODS: We conducted semi-structured interviews with medical oncologists, radiation oncologists, and urologists from different U.S. practice settings until thematic saturation was achieved at n = 14. The interview guide was based on the Tailored Implementation in Chronic Diseases Framework to identify key determinants of practice. Interview transcripts were independently coded by ≥2 investigators using a constant comparative method. RESULTS: The decision to perform or refer for germline genetic evaluation is affected by factors at multiple levels. Although patient factors sometimes play a role, the dominant themes in the decision to conduct germline genetic evaluation were at the physician and organizational level. Physician knowledge, coordination of care, perceptions of the guidelines, and concerns about cost were most frequently discussed as the main factors affecting utilization of germline genetic evaluation. CONCLUSIONS: There are currently numerous barriers to implementation of germline genetic evaluation for PCa. Efforts to expand physician education, to develop tools to enhance genetics in practice, and to facilitate coordination of care surrounding genetic evaluation are important to promote guideline-concordant care.


Subject(s)
Genetic Counseling/statistics & numerical data , Genetic Testing/statistics & numerical data , Germ-Line Mutation/genetics , Prostatic Neoplasms/genetics , Adult , Attitude of Health Personnel , Humans , Male , Middle Aged , Oncologists , Physician's Role , Practice Guidelines as Topic , Qualitative Research , Radiation Oncologists , Urologists
18.
Eur Urol Focus ; 7(4): 890-893, 2021 07.
Article in English | MEDLINE | ID: mdl-32295754

ABSTRACT

According to the 2018 American Urological Association census, only 9.2% of practicing urologists are female and 16% are non-Caucasian. Social media have been used in other medical disciplines to promote diversity and form networks for gender and racial minorities. We studied the hashtag #ILookLikeAUrologist, started to promote diversity and inclusion in urology, to determine if it had any signs of a community of practice. Over the 4 yr since its inception, there have been 3694 tweets using the hashtag #ILookLikeAUrologist. The discussion had 1348 unique contributors, hailing from 35 countries on six continents. There were 8,156,051 impressions, highlighting a wide potential reach for the discussion. In a random 25% sample of original tweets, the main themes were gender representation, followed by personal narratives and camaraderie. Most contributors were practicing urologists, followed by urology trainees, other physicians, and professional organizations. Although most posts were authored by women, men represented nearly a quarter of individual contributors. The #ILookLikeAUrologist hashtag has been widely used by a large global audience in urology. Future research is warranted to examine the impact of digital communities of practice on outcomes such as fostering collaboration, providing mentorship, and reducing burnout. PATIENT SUMMARY: The #ILookLikeAUrologist hashtag has been widely used on Twitter by a large global audience to promote diversity and inclusion in urology.


Subject(s)
Physicians , Social Media , Urology , Cultural Diversity , Female , Humans , Male , United States
19.
Eur Urol ; 79(1): 56-59, 2021 01.
Article in English | MEDLINE | ID: mdl-33010986

ABSTRACT

Dissemination of misinformation through social media is a major societal issue. Bladder cancer is the second most common urological cancer in the world, but there are limited data on the quality of bladder cancer information on social networks. Our objective was to characterize the quality of information and presence of misinformation about bladder cancer on YouTube, the most commonly used social media platform. We reviewed the first 150 YouTube videos about "bladder cancer" using two validated instruments for consumer health information and assessed the videos for the presence of misinformation. The videos had a median of 2288 views (range, 14-511 342), but the overall quality of information was moderate to poor in 67%, based on scores of 1-3 out of 5 on the validated DISCERN instrument. A moderate to high amount of misinformation was present in 21% of videos and reached 1 289 314 viewers. Commercial bias was apparent in 17% of videos, which reached 324 287 viewers. From a networking perspective, comments sections in the videos were sometimes used to request medical advice (20%), provide medical advice to others (9%), or give support (19%). In conclusion, YouTube is a widely used source of information and advice about bladder cancer, but much of the content is of poor quality. PATIENT SUMMARY: A large quantity of content about bladder cancer is available on YouTube. Unfortunately, much of the content is of moderate to poor quality and presents a risk of exposure to misinformation.


Subject(s)
Communication , Information Dissemination , Social Media , Urinary Bladder Neoplasms , Humans , Video Recording
20.
Cancer Treat Res Commun ; 25: 100212, 2020.
Article in English | MEDLINE | ID: mdl-33091732

ABSTRACT

BACKGROUND: Germline testing is recommended for all men with metastatic prostate cancer (PCa), and for some with localized PCa meeting specific histologic or family history criteria. Germline genetic evaluation has important implications for PCa prognosis and management, as well as implications for family members and cancer screening. Despite the importance of germline evaluation, its utilization in urologic practice is unknown. MATERIALS AND METHODS: We conducted a 32-item survey of U.S. urologists to examine knowledge of germline testing guidelines and practice patterns. It was shared through email to 6 American Urological Association sections, the Veterans Affairs Urology Mailgroup, and social media. RESULTS: Among 132 total respondents from diverse practice settings across the U.S., 12% perform germline testing, 44% refer to a genetic counselor, 11% do both, and 33% do not test/refer. Only 4% had formal education in genetics. While 98% ask about PCa family history, only 76% and 52% ask about breast and ovarian cancer. When presented with hypothetical case scenarios where germline testing is indicated, many respondents indicated they would not offer genetic counseling or testing. Younger age (p = 0,03), academic practice (p = 0.04), and specializing in PCa/oncology (p = 0.007) were significantly associated with performing or referring for germline testing. Specializing in PCa/oncology was significantly associated with recommending germline testing for all case scenarios involving metastatic PCa (p = 0.0009) CONCLUSION: Our results suggest significant gaps in knowledge of germline testing and alignment of practice with national guidelines among urologists. Germline testing education and facilitation of genetic evaluation in urologic practice is warranted.


Subject(s)
Germ-Line Mutation/genetics , Practice Guidelines as Topic/standards , Prostatic Neoplasms/genetics , Urologists/standards , Adult , Aged , Humans , Male , Middle Aged , Surveys and Questionnaires
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