Cancer Control最新文献

{"title":"Clinical Significance of Germline Variants in the <i>BRCA2</i> Gene and Their Association With Prostate Cancer Risk in Polish Men: A Case-Control Study.","authors":"Marta Heise, Piotr Jarzemski, Julia Kuk","doi":"10.1177/10732748251327720","DOIUrl":"https://doi.org/10.1177/10732748251327720","url":null,"abstract":"<p><p>ObjectivesCurrently, prostate cancer (PC) is the most common medical problem endangering men's health and life worldwide. We tested the association of detected germline variants in <i>BRCA2</i> with PC risk and estimated their impact on the clinical course of the disease, including overall survival time, in Polish men with localized PC that qualified for radical prostatectomy (RP).Materials and MethodsDNA of 97 PC patients from various age groups and with different disease stages was analyzed. Control DNA samples consisted of 100 male volunteers without PC that were age-matched to the study group. Next Generation Sequencing (NGS) and Sanger sequencing were used for variant detection.ResultsFive rare variants of the <i>BRCA2</i> gene were detected in single PC patients. There were four substitutions (c.8010G>C, c.682-32A>G, c.9257-75G>C, c.516+17G>C) and one deletion (c.6393_6396del). Among the detected variants, one was pathogenic, one was a variant of uncertain significance (VUS), and three were likely benign. The c.8010G>C was a new variant. In the carrier of the c.6393_6396del pathogenic variant, PC was diagnosed at the T3 stage and the patient survived 48 months after PC confirmation (the date of biopsy).ConclusionsThe <i>BRCA2</i> c.6393_6396del pathogenic variant demonstrates an association with clinical features of the disease (GS and TNM) and shorter survival of patients with localized prostate cancer that qualified for RP. Additionally, our findings suggest that multi-organ cancer aggregation in a family, including prostate cancer aggregation in close relatives, and young age at cancer onset should be taken into consideration by clinicians as an indication to refer patients to molecular testing.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251327720"},"PeriodicalIF":2.5,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12035019/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143989419","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Association of Cigarette Smoking and Alcohol Drinking With Risk of 12 Common Cancers Among Low-Income American Adults in the Southeastern United States.","authors":"Jiajun Shi, Wanqing Wen, Qiuyin Cai, Martha J Shrubsole, Xiao-Ou Shu, Wei Zheng","doi":"10.1177/10732748251341523","DOIUrl":"10.1177/10732748251341523","url":null,"abstract":"<p><p>IntroductionCigarette smoking and alcohol drinking are well-known risk factors for various cancers. We aimed to determine a comprehensive profile of cancer risk associated with these lifestyle factors in predominantly low-income Americans.MethodsWe prospectively investigated the associations between cigarette smoking, alcohol drinking, and the risk of twelve cancer types among over 74 000 low-income Black and White adults from the Southern Community Cohort Study in the United States. We used the Cox proportional hazards models to estimate the hazard ratios (HRs) and corresponding 95% confidence intervals (CIs) for these associations.ResultsCompared to never smokers, current smokers had an increased HR for cancers of lung (HR: 14.14, 95% CI: 11.47-17.42), liver and bile duct (HR: 3.19, 95% CI: 2.40-4.25), kidney (HR: 1.47, 95% CI: 1.10-1.96), pancreas (HR: 1.88, 95% CI: 1.41-2.50), oral and pharynx (HR: 3.83, 95% CI: 2.70-5.42), and bladder (HR: 2.81, 95% CI: 1.92-4.11), and a reduced risk of prostate cancer (HR: 0.78, 95% CI: 0.68-0.89) and uterine cancer (HR: 0.45, 95% CI: 0.32-0.63); former smokers also exhibited elevated risks for cancers of lung, liver and bile duct, kidney, and bladder; however, a decreased risk for the lung, liver and bile duct, and bladder cancers was observed with longer durations of smoking cessation, with HRs from 9.71, 2.26, and 2.28 for a duration of <10 years down to 4.28, 1.58, and 1.42 for a duration of 10-19 years, respectively. Compared to never-drinkers, participants who consumed more than 2 drinks per day had increased risks of liver and bile duct cancer (HR: 1.66, 95% CI: 1.29-2.13) and oral and pharynx cancer (HR: 2.15, 95% CI: 1.58-2.91).ConclusionCigarette smoking and alcohol drinking were associated with an increased risk of multiple cancers. Our findings support efforts to control cigarette and alcohol consumption for cancer prevention in low-income U.S. populations.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251341523"},"PeriodicalIF":2.5,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12120277/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144175479","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Assessing Sun Protection Policies in Texas School Districts Located in Counties With the Lowest and Highest Melanoma Risk: Content Analysis and Cross-Sectional Study.","authors":"Nabeel Ahmad, Brooke Bartley, Stephanie Zhang, Madison M Taylor, Karl Schrader, Kehe Zhang, Hung Quoc Doan, Cici Bauer, Kelly C Nelson, Jennifer Cofer","doi":"10.1177/10732748251352702","DOIUrl":"10.1177/10732748251352702","url":null,"abstract":"<p><p>IntroductionSchool policy can encourage sun safe habits, such as wearing hats and applying sunscreen. However, sun safety policies (SSP) have not been formally assessed for Texas independent school districts (ISDs), particularly in counties with the highest melanoma incidence relative risk (RR). This study aims to assess the presence, strength, and intent of SSPs across Texas ISDs located in counties with the highest and lowest melanoma incidence. We also identify factors correlated with stronger SSP.MethodsEleven components of SSPs from 102 ISDs were evaluated in this cross-sectional study by examining school district websites, official documents, social media, media appearances, statements by school officials, and the Texas Education Agency's online database. Coders were trained to score each policy's content, presence, and strength.ResultsPolicies for sunscreen use and hats existed in 94% (n = 96) and 92% (n = 94) of ISDs, respectively. In counties with the highest melanoma incidence RR, 30% (n = 15) and 44% (n = 22) of ISDs allocated resources for sun safety and outdoor shade, compared to 2% (n = 1) and 3% (n = 2) in low-risk counties. No ISDs had SSPs on UV protective clothing, accountability, or modeling sun safety behaviors. SSP strength was positively correlated with percentage of school nurses (ρ = 0.564, <i>P</i> < 0.001), community median household income (ρ = 0.431, <i>P</i> < 0.001), percentage of female students (ρ = 0.461, <i>P</i> < 0.001), and tax rate (ρ = 0.366, <i>P</i> = 0.0002). Negative correlations were found with percentage of central staff administration (ρ = -0.523, <i>P</i> < 0.001) and graduation rates (ρ = -0.335, <i>P</i> < 0.001).ConclusionOur findings underscore the need for interventions to strengthen SSPs across Texas.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251352702"},"PeriodicalIF":2.5,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12185954/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144477475","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Assessing the Quality of the Endocervical Component: Pitfalls to Cervical Cancer Screening in Limpopo Province, South Africa.","authors":"Dorah Ursula Ramathuba, Doris Ngambi","doi":"10.1177/10732748251363746","DOIUrl":"10.1177/10732748251363746","url":null,"abstract":"<p><p>BackgroundSpecimen adequacy is an essential indicator of screening programme performance. The effectiveness and efficiency of Pap tests are classified in the laboratory based on their adequacy for interpretation as satisfactory or unsatisfactory.PurposeThe purpose of the study was to determine the processes of collecting, storing, transporting, and evaluating Pap smears in rural health facilities in Limpopo Province, South Africa.MethodA mixed-method research approach was used for the study. An exploratory sequential mixed-methods design was employed to collect and analyse qualitative data, and then use the findings to develop an instrument in a subsequent quantitative phase, thereby increasing the breadth and depth of understanding of the phenomena under study. The population comprised professional nurses, operational managers, and laboratory technicians. The qualitative strand explored challenges to cervical cancer screening, while the quantitative strand described factors contributing to the inadequacy of the cervical component. The study was conducted from July 2019 to February 2020. The results were merged for triangulation.FindingsThe inadequacy rates reported by districts ranged between 38% and 50%. The findings revealed that professional nurses lacked adequate knowledge of the skills required for collecting, labelling, and storing Pap smears before dispatch. Furthermore, the in-service training provided was poorly coordinated and unstructured, and other professional nurses were not keen on screening for cervical cancer, resulting in poor health outcomes for women in the community who had to return for repeat smears.ConclusionInadequacy of the transformation zone component and unsatisfactory smears have a higher risk of progression to cervical cancer or pre-cancer lesion than adequacy of the transformation zone.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251363746"},"PeriodicalIF":2.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12351071/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144838390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Clinical Characteristics and Survival in Patients with Brain Metastases From Pancreatic Cancer: A Retrospective Observational Study.","authors":"Susan Haag, Derek Cridebring","doi":"10.1177/10732748251347844","DOIUrl":"10.1177/10732748251347844","url":null,"abstract":"<p><p>IntroductionBrain metastasis (BM) is an inauspicious finding in patients with pancreatic cancer, which significantly increases morbidity and mortality. The presentation is rare, and thus, outcomes on brain metastases from pancreatic cancer are limited.MethodsThis retrospective monocentric analysis included the electronic medical records of patients ≥ 18 years presenting with BM from pancreatic cancer. Clinical, demographic, and overall survival (OS) data were analyzed. Brain imaging (computed tomography, and magnetic resonance imaging) was used for BM diagnosis. OS was calculated from the date of diagnosis to either the date of last follow-up or death. Cox regression on OS time was used with an indicator variable for patients who ultimately developed a BM.ResultsBrain metastases was diagnosed in 34 (3.7%) patients with pancreatic cancer treated in our institution. Of the BM patients: 7 (22%) were non-White; 16 (47%) were female; the median age was 69; 35% were diagnosed at Stage II and III; and 65% were diagnosed at Stage IV. BM was the first diagnosed metastasis in 14 (41%) of the patients; in 5 individuals (15%) BM were detected within the first 100 days of pancreatic cancer diagnosis. OS from BM diagnosis was 9 months (95% CI [6.92,17.86]). The adjusted hazard ratio for patients with BM was .91(95% CI [.88, .94]; <i>P</i> = 0.60], which was not significant.ConclusionsDue to the low incidence of BM in pancreatic cancer, identification of disease remains a current challenge. In this study, we found that BM from pancreatic cancer may be the first sign that the cancer has spread. Using advanced neuroimaging early may help physicians diagnose these metastases sooner and possibly improve survival. With a larger cohort size, the findings may be potentially impactful for clinicians and patients. Prospective, multicentric studies are warranted to identify prognostic factors for treatment and survival.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251347844"},"PeriodicalIF":2.5,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12138211/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144217367","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Non-Inferior Randomized Trial of Neoadjuvant Endocrine Therapy Compared to Neoadjuvant Chemotherapy in Premenopausal Patients With Hormone-Responsive and HER2-Negative Lymph Node-Negative Breast Cancer.","authors":"Chongshan Gu, Yingjian He, Nan Zhang, Yiqiang Liu, Jinfeng Li, Tianfeng Wang, Tie Fan, Zhaoqing Fan, Tao Ouyang","doi":"10.1177/10732748251339958","DOIUrl":"10.1177/10732748251339958","url":null,"abstract":"<p><p>ObjectivesNeoadjuvant endocrine therapy (NET) has demonstrated efficacy in postmenopausal patients with hormone-responsive and HER2-negative breast cancer. However, few data are available on NET in premenopausal women. This trial was designed to compare the effectiveness of neoadjuvant chemotherapy (NCT) with NET in premenopausal patients with hormone-responsive, HER2-negative, and lymph node-negative breast cancer.MethodsIn this prospective, randomized study, premenopausal patients with hormone-responsive, HER2-negative, and lymph node-negative breast cancer were recruited. The enrolled patients were randomly assigned (1:1) to receive either NCT or NET with goserelin and tamoxifen, followed by goserelin and anastrozole. The primary purpose was to evaluate the non-inferiority of NET to NCT using a clinical response rate assessed by ultrasound.ResultsA total of 68 patients were assigned to receive either NCT (n = 31) or NET (n = 37). The clinical response rate was 16.1% for NCT and 35.1% for NET (estimated difference 19.0%, 95%CI: -1.1%-39.1%, non-inferior <i>P</i> = 0.002). The rates of breast-conserving surgery were not significantly different between the NCT and NET groups (90.3% vs 83.8%, <i>P</i> = 0.494).ConclusionsA 35.1% clinical response rate was observed in premenopausal patients after NET. However, this study was underpowered to conclude the non-inferiority of NET to NCT because of its early closure.Trial registrationClinicalTrials.gov NCT02535221.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251339958"},"PeriodicalIF":2.5,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12062642/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144062946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Usefulness of the ASSUSTENT Application and ASSIST Brochure in Cancer Patients Using Sunitinib.","authors":"Vashti N M F Tromp, Reyhane Alinezhad Darsara, Mirjam Crul, Nicole E Billingy, Kim Westerdijk, Astrid A M van der Veldt, Charlotte S Pieters, Hans M Westgeest, Roos F Bleckman, Iris van der Velde, Paul Hamberg, Iris Walraven, Corina J G van den Hurk, Jacqueline G Hugtenburg","doi":"10.1177/10732748251343286","DOIUrl":"10.1177/10732748251343286","url":null,"abstract":"<p><p>Purpose of ResearchThe ASSUSTENT application and the ASSIST brochure have been developed to support medication intake and symptom monitoring. This study aimed to evaluate patient experiences and the factors that are a barrier to or facilitate the use of these tools. Additionally, the effect of their use on Health-Related Quality of Life (HRQoL) and satisfaction with information about medication was also assessed.MethodsAn exploratory study with a mixed method design was performed. Patients starting or already using sunitinib were asked to use the application or the brochure for 6 months. They completed questionnaires about their experiences with the intervention, that is, the Satisfaction with Information about Medication scale (SIMS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) at baseline (T0), three months (T1), and 6 months (T2) following inclusion. Patients were also asked to participate in a semi-structured interview at T2. The main study endpoint was the feasibility of the use of the application and the brochure.ResultsOf the 22 (65%) patients who signed the informed consent, 19 (86%) completed T0, 15 (68%) T1, and 12 (54%) T2. Twelve agreed to be interviewed. Both the application and brochure were considered user friendly and useful to manage symptoms and prepare for consultations. Patients were generally satisfied with the information about medication. The mean global HRQoL increased from 69 (T0) to 84 (T2).ConclusionAs supplements to usual care, both the application and the brochure met the needs of cancer patients using sunitinib. Their use led to an increased self-efficacy in managing symptoms. The availability of the brochure adds to patient-centered care and equal access to care, and increases self-efficacy.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251343286"},"PeriodicalIF":2.5,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12103668/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144144203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Real-World Adherence to Multi-Target Stool DNA Testing for Colorectal Cancer Among Asian Americans.","authors":"Mallik Greene, Mark Camardo, Quang A Le, Raja Kakuturu, A Burak Ozbay, A Mark Fendrick, Michael Dore, Paul Limburg","doi":"10.1177/10732748251330695","DOIUrl":"10.1177/10732748251330695","url":null,"abstract":"<p><p><b>Introduction:</b> Asian Americans have lower colorectal cancer (CRC) screening rates compared to other racial/ethnic groups. Given the importance of early detection and subsequent treatment in improving survival, this study examines adherence to first-time multitarget stool DNA (mt-sDNA) testing among Asian American patients.<b>Methods:</b> This retrospective study linked two data sources: Komodo Research Data + MapEnhance Komodo Lab database and the Exact Sciences Laboratories database. Asian American's 45 years and older who were first-time users of mt-sDNA testing between 2017 and 2023, with continuous insurance enrollment for two years, were included. Adherence to mt-sDNA testing was analyzed using descriptive statistics and logistic regression to identify factors associated with adherence.<b>Results:</b> The final sample included 336 288 Asian American patients, primarily covered by commercial insurance (70.3%), aged 50-75 years (80.7%), female (56.5%), living in metropolitan areas (95.4%), and under the care of a primary care physician (74.9%). Overall adherence to mt-sDNA testing was 70.9%, with significant variation by payer type ranging from 60.7% for Medicaid to 72.2% for Medicare (<i>P</i> < 0.0001). Overall adherence rates were approximately 70% across all age groups, sexes, and geographic regions but were notably high among gastroenterology (GI) provider patients (81.6%) and those receiving full digital outreach (via both SMS and email) (72.8%). Logistic regression identified several significant predictors of adherence: older age, males, coverage by commercial insurance, residing outside metropolitan areas, seeing GI providers, receiving digital outreach via SMS or both SMS and email, and preferring English.<b>Conclusion:</b> This study found that Asian American patients that were first-time users of mt-sDNA testing had high adherence rates. However, significant disparities existed within this population based on payer type and sociodemographic factors. Targeted outreach strategies are essential to reduce barriers and improve CRC screening uptake, ultimately reducing the burden of CRC in the Asian American population.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251330695"},"PeriodicalIF":2.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11963727/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143765655","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Identifying Sociodemographic Disparities in Negative Cancer Beliefs and Health-Information-Seeking Attitudes Among Oregonians.","authors":"Sophie Feng, Jian Li, Jessica Currier, Paige E Farris, Thomas Sellers, Jackilen Shannon, Zhenzhen Zhang","doi":"10.1177/10732748251361300","DOIUrl":"10.1177/10732748251361300","url":null,"abstract":"<p><p>BackgroundBeliefs and perceptions about cancer risks and accessibility of health information play an important role in influencing cancer screening behaviors and various health outcomes. However, these beliefs and attitudes are not well understood, especially across different racial and socioeconomic groups. The aim of this study was to identify sociodemographic factors associated with cancer risk perceptions and health-information-seeking attitudes among adults.MethodsThis study utilized data from the Understanding Cancer in Oregon (UCanOR) project, which administered a 47-item cross-sectional survey to capture sociodemographic and behavioral information. Participants were recruited through area-based random sampling and public convenience sampling across Oregon. Multivariable generalized linear and logistic regression analyses were used to evaluate attitudes towards cancer risk and accessing health information.ResultsThe study included a total of 1357 respondents [mean age of 50.0 (SD = 17.8)], primarily Non-Hispanic White (87.3%), followed by Asians/Pacific Islanders (8.4%), Hispanic White (3.5%), and Black (0.8%). Compared to Non-Hispanic Whites, Asians/Pacific Islanders were 2.5 times more likely to believe cancer is caused by behavior or lifestyle, 2.8 times more likely to agree that there is little one can do to prevent cancer, and 1.6 times more likely to associate cancer with death.ConclusionAsians/Pacific Islanders were more likely to agree with statements expressing frustration and distrust towards cancer beliefs and health information searches. Future community outreach efforts should consider tailoring the message to their target audiences. Understanding and addressing the underlying reasons for these negative perceptions is crucial for developing effective education and health promotion strategies.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251361300"},"PeriodicalIF":2.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12304630/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144734691","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Supporting Participant Engagement in Cancer Genomics Research in Rare Cancers: A Qualitative Study of Patients, Caregivers, and Advocates.","authors":"Vinayak Venkataraman, Lily Weber, Lauren Fisher, Andrew Khalaj, Eirian Siegal-Botti, Diane Diehl, Katherine A Janeway, Suzanne George, Jennifer W Mack","doi":"10.1177/10732748251364041","DOIUrl":"10.1177/10732748251364041","url":null,"abstract":"<p><p>IntroductionThe purpose of this study was to identify patterns and themes that support participant engagement in patient-partnered cancer genomics research.MethodsThe Osteosarcoma (OS) and Leiomyosarcoma (LMS) Projects of Count Me In allow any patient with OS and LMS in the US and Canada to contribute their health information, tumor samples, and lived experience to an aggregated, public research database. We conducted in-depth interviews with research partners, including patients, caregivers, and advocates, who were purposefully sampled to ensure inclusion of racial and ethnic minorities, those with less than college education, and adolescents (age 12-17). Coding and analysis were conducted by the research team using NVivo to identify themes that support engagement.ResultsTen patients, ten caregivers, and six advocates were interviewed. Seven themes were identified that support participant engagement: (a) motivation, (b) respect, (c) trust, (d) inclusivity, (e) relationship, (f) engagement, and (g) empowerment. Research partners were motivated to serve others, play a part in scientific discovery, and play a role in a novel initiative. Respect was supported through timeliness in communication or follow-up, an appropriate amount of time and information requested, and an acknowledgement that illness may prevent participation. Trust was developed through ensuring adequate privacy/confidentiality safeguards and demonstrating transparency. Inclusivity was demonstrated through showcasing broad representation and mitigating technical barriers. Research partners wanted to feel a relationship with, and engaged and empowered by, researchers. Adolescents reported their parents were more engaged than they were.ConclusionsResearch partners, including patients, caregivers, and advocates, have a strong desire to engage with researchers. We identified seven themes to support engagement. Researchers can optimize their communication and operations to support participant engagement in cancer genomics research.</p>","PeriodicalId":49093,"journal":{"name":"Cancer Control","volume":"32 ","pages":"10732748251364041"},"PeriodicalIF":2.6,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12304653/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144734692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}