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1.
J Natl Compr Canc Netw ; : 1-5, 2024 May 31.
Article in English | MEDLINE | ID: mdl-38821107

ABSTRACT

Geographic location of a patient directly impacts access to care, including preventive screenings and early detection. Although there is a higher prevalence of the most common cancers in urban areas, mortality rates are higher in rural communities. Notably, indigenous communities residing on tribal lands often experience heightened access issues and environmental exposure to known and probable human carcinogens. The burdens associated with a cancer diagnosis can be exacerbated by various barriers to accessing quality care; however, there are emerging best practices to overcome these barriers. Understanding the interplay between geography and a patient's access to cancer care services is crucial for addressing existing disparities and ensuring equitable health care provision across regions. By leveraging innovative policy and practice solutions, communities can begin to close care gaps and establish bidirectional trust between patients and providers across the care continuum, which is necessary to enact meaningful reforms. To advance the conversation on geographic disparities and strategies that mitigate associated barriers to care, NCCN hosted the Policy Summit "Cancer Across Geography" on June 15, 2023, at the National Press Club in Washington, DC. Through keynote addresses and multistakeholder panel discussions, this hybrid event explored care imbalances across geography, recent policy and technology advancements, and current challenges associated with cancer care. This created a forum for a diverse group of attendees to thoughtfully discuss policies and practices to advance high-quality, effective, efficient, equitable, and accessible cancer care for all. Speakers and attendees featured multidisciplinary clinicians, epidemiologists, community oncologists, researchers, payers, patient advocates, industry, providers, policymakers, and leaders representing underserved communities, among others.

2.
Vaccines (Basel) ; 12(2)2024 Jan 24.
Article in English | MEDLINE | ID: mdl-38400098

ABSTRACT

The risks of secondary cancers associated with human papillomavirus (HPV) infection are as much as three times higher for survivors of pediatric, adolescent, and young adult cancer (PYAC) compared to the general population. Despite this, HPV vaccination rates among PYAC survivors remain low. Whereas pediatric oncology providers endorse HPV vaccination of PYAC survivors, many lack the resources or opportunities to intervene. The responsibility of HPV vaccination, therefore, falls to primary care providers and practices. This article provides an overview of the challenges with HPV vaccination that are distinct to PYAC survivors and discusses potential strategies to increase HPV vaccine coverage in this population.

3.
Cancer Prev Res (Phila) ; 16(10): 581-589, 2023 10 02.
Article in English | MEDLINE | ID: mdl-37258419

ABSTRACT

Although pediatric, adolescent, and young adult (PAYA) cancer survivors are at increased risks for secondary cancers, their HPV vaccine uptake rates are poor. Therefore, we conducted a mixed-methods study to identify the barriers and opportunities for HPV vaccine delivery among PAYA cancer care providers. We distributed a semistructured questionnaire to a professional organization comprised of PAYA oncology and hematology healthcare providers between April and July 2022. Questionnaire measures included demographic and practice characteristics, HPV vaccine knowledge, willingness, barriers, opportunities, and roles for HPV vaccine delivery. Descriptive characteristics were generated for quantitative data, and content analysis was used to identify themes. A total of 49 providers responded to our survey. A majority were female (68%) and non-Hispanic white (74%). Approximately 76% were oncology or hematology physicians, and most worked in a cancer center or children's hospital (86%). Over half (63%) had been practicing for >15 years, and a majority saw patients ages 11 to 17. Although less than half reported discussing HPV vaccination with their patients, 69% were willing to become involved in HPV vaccine delivery. The most frequently reported barriers identified in our content analysis were related to system-level factors. Furthermore, providers identified opportunities within cancer prevention education, transitions in care, and at the system-level. Although barriers to HPV vaccination persist in cancer care, most providers perceived there to be opportunities to become involved in HPV vaccine delivery. Identifying strategies for PAYA oncology and hematology healthcare providers to adopt a stronger role in HPV vaccination remains a significant opportunity for future implementation research. PREVENTION RELEVANCE: This mixed-methods study is the first to investigate and assess barriers and opportunities for HPV vaccine delivery among PAYA cancer healthcare providers. Our findings can serve as an important framework for future implementation research targeted towards HPV vaccine delivery in cancer clinical settings. See related Spotlight, p. 545.


Subject(s)
Neoplasms , Papillomavirus Infections , Papillomavirus Vaccines , Adolescent , Young Adult , Humans , Male , Female , Child , Human Papillomavirus Viruses , Papillomavirus Infections/complications , Papillomavirus Infections/prevention & control , Vaccination , Health Personnel , Neoplasms/prevention & control , Neoplasms/drug therapy , Health Knowledge, Attitudes, Practice
4.
Pediatr Blood Cancer ; 69(11): e29962, 2022 11.
Article in English | MEDLINE | ID: mdl-36094384

ABSTRACT

INTRODUCTION: The risk of human papillomavirus (HPV)-associated cancers is significantly higher among survivors of a childhood cancer compared to the general population. Despite this, their HPV vaccine uptake rates are lower. We examined factors related to HPV vaccine uptake among childhood cancer survivors from Western New York over 13 years following the introduction of HPV vaccines. METHODS: Retrospective review of patients diagnosed with invasive or noninvasive cancerous conditions at age 9 or younger treated at Roswell Park Oishei Children's Cancer and Blood Disorder Program. We matched vaccine date information for patients aged 9-26 years between 2006 and 2020 from the New York State Immunization Information System. Demographic and cancer-related information was abstracted from electronic medical records. Cumulative vaccine uptake was assessed by Kaplan-Meier and Cox proportional hazards regression models. RESULTS: A total of 284 patients were included in the analyses. Most were non-Hispanic/White (80.3%) and resided in a metropolitan area (81.7%). Approximately half had leukemia or lymphoma (54.9%), and most received chemotherapy. Females were more likely to initiate the HPV vaccine and did so sooner (median = 5.5 years) than males (median = 5.7 years; log-rank p = .301). Patients who were older at vaccine eligibility and males who received blood product transfusions were significantly less likely to initiate the HPV vaccine. CONCLUSION: While rates of HPV vaccine initiation have been increasing with time among childhood cancer survivors, they remain low overall, with differences seen by treatment and diagnosis. Our findings support the need for further research to optimize HPV vaccine delivery in cancer care.


Subject(s)
Alphapapillomavirus , Cancer Survivors , Neoplasms , Papillomavirus Infections , Papillomavirus Vaccines , Child , Female , Humans , Male , Neoplasms/drug therapy , New York/epidemiology , Papillomavirus Infections/prevention & control , Papillomavirus Vaccines/therapeutic use , Vaccination
5.
JNCI Cancer Spectr ; 6(2)2022 03 02.
Article in English | MEDLINE | ID: mdl-35603844

ABSTRACT

Rural populations continue to experience persistent cancer disparities compared with urban populations particularly in cancers that can be prevented or detected early through screening and vaccination. Although the National Cancer Institute and the larger cancer research community have identified rural community partnerships as the foundation for reducing the disparities, we have identified limited application of community-based participatory research in cancer prevention and control research. Guided by the Community-Based Participatory Research Conceptual Model and our collective experience, we provide a framework for a community-cancer center partnership that focuses on promoting health equity. In this commentary, we articulate that the partnership process must foster capacity for communities and cancer centers, strive for rural representation in clinical trials and biobanking, build a pipeline for dissemination and implementation research, and create a bidirectional flow of knowledge between communities and academic institutions. Authentic partnerships with rural communities should be the ultimate goal of cancer centers, and the process described in this commentary can serve as an initial platform to build capacity and continue to strive toward that goal.


Subject(s)
Health Equity , Neoplasms , Biological Specimen Banks , Community-Based Participatory Research , Community-Institutional Relations , Humans , Neoplasms/prevention & control , Rural Population
6.
Curr Dev Nutr ; 6(3): nzac012, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35261959

ABSTRACT

Recruitment of minority participants to clinical trials, especially studies without therapeutic intent, has been historically challenging. This study describes barriers to and successes of recruitment and retention strategies to dietary studies. A flaxseed study was conducted in healthy, postmenopausal women of African ancestry (AA) and European ancestry (EA) to assess associations between gut microbial community composition and host metabolism (NCT01698294). To ensure equitable participation by AA and EA women, multiple forms of recruitment were utilized, including advertisements, posters, e-mail, word of mouth, and community outreach. Successful recruitment and retention of AA women to the intervention depended upon the specific methods used. AA women compared with EA women were more likely to respond to direct recruitment and community-based methods, rather than general advertisements. However, once women expressed interest, similar rates of consent were observed for AA and EA women (AA and EA: 51.6% vs. 55.7%, respectively; P > 0.05), supporting the willingness of minority populations to participate in clinical research. Retention, however, was lower among AA compared with EA women (AA and EA: 57.6% vs. 80.9%, respectively; P < 0.01), which may be related to multiple factors, including health reasons, intolerance to flaxseed, noncompliance with study requirements, time constraints, and nonspecified personal reasons. This study confirms the utility of direct community-based strategies for recruitment of diverse populations into nontherapeutic dietary intervention studies. The methods used successfully identified eligible women who expressed willingness to consent to the trial and were able to achieve >70% of recruitment goals for AA women. Future efforts are warranted to improve retention to complex studies. This trial was registered at www.clinicaltrials.gov as NCT01698294.

7.
J Adolesc Health ; 69(6): 1024-1031, 2021 12.
Article in English | MEDLINE | ID: mdl-34312066

ABSTRACT

PURPOSE: The purpose of this study is to identify distinct neighborhood profiles patterned by key structural, physical, and social characteristics and test whether living in different profiles are associated with body mass index trajectories during adolescence in racial/ethnic minority female youth. METHODS: Participants were 1,328 sexually active female adolescents and young adults aged 14-23 years, predominately Hispanic and black, enrolled in an human papillomavirus type 4 vaccine (Gardasil) surveillance study at a large adolescent health clinic in New York City between 2007 and 2018. Body mass index was calculated from weight and height every 6 months. A comprehensive set of neighborhood structural, social, and physical characteristics from multiple national and state datasets was linked to each participant based on home address. RESULTS: Latent profile analysis revealed five distinct neighborhood profiles in New York City: High Structural/High Social Advantage, Moderate Advantage/Low Crime, Low SES (Socioeconomic Status)/High Activity, Low SES/High Social Advantage, and High Disadvantage. Results from multilevel growth curve analysis revealed that living in Low SES/High Activity neighborhoods was associated with a lower BMI at age 22 (b = -1.32, 95% confidence interval -2.49, -.16), as well as a slower increase in BMI from age 14 to 22 years (b = -.22, 95% confidence interval -.46, .02), compared to the High Disadvantage profile. CONCLUSIONS: Our findings suggest that improving neighborhood structural, social, and physical environments may help promote healthy weight and reduce health disparities during adolescence and young adulthood.


Subject(s)
Ethnic and Racial Minorities , Ethnicity , Adolescent , Adult , Body Mass Index , Female , Humans , Minority Groups , Residence Characteristics , Socioeconomic Factors , Young Adult
8.
BMC Cancer ; 21(1): 1, 2021 Jan 04.
Article in English | MEDLINE | ID: mdl-33397301

ABSTRACT

BACKGROUND: This study examined current physical activity levels and preferences for exercise settings and activities among adult survivors of childhood cancers as a strategy to inform the feasibility and design of such programs. METHODS: A mixed-methods design was used to investigate current activity levels as well as barriers to and preferences for physical activity among 20 adult survivors of pediatric cancer. RESULTS: One-half of participants reported engaging in regular physical activity, although the frequency, intensity, and duration varied. Overall, 17 of the 20 participants (85%) stated they would be interested in participating in a structured exercise intervention, and they expressed a strong interest in walking (76%), bicycling (53%), and weight training (53%). Common barriers to participation in a potential structured exercise program were insufficient time, current health issues, and program location/distance. Nearly all participants agreed that information on nutrition and diet should be included as part of an exercise intervention. CONCLUSIONS: These findings will help inform the design and implementation of future exercise programs to enhance physical activity among this high-risk group of cancer survivors.


Subject(s)
Cancer Survivors/statistics & numerical data , Exercise Therapy , Neoplasms/rehabilitation , Quality of Life , Research Design , Adolescent , Adult , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Infant , Infant, Newborn , Male , Prognosis , Retrospective Studies , Young Adult
9.
J Racial Ethn Health Disparities ; 8(2): 375-383, 2021 04.
Article in English | MEDLINE | ID: mdl-32529423

ABSTRACT

OBJECTIVE: We examined barriers to accessing medical care for migrant US-residing Marshallese Islanders. METHODS: Cross-sectional analyses were conducted to identify potential inequities. Surveys from largely migrant diabetic Marshallese Islanders (n = 255) were compared with nationally representative data. Two major outcomes were assessed including 1-whether or not one reported having forgone medical care in the past year because of cost-and 2-whether or not one reported not having a usual source of care. RESULTS: Overall, 74% and 77% of Marshallese Islanders reported forgone care and no usual source of care, respectively, versus 15% and 7% of the US diabetic population. In multivariable analyses, being younger; uninsured; unemployed; male; of lower education; Native American or Hispanic (versus White); and residing in the South were associated with forgone care nationwide, whereas only lacking insurance was associated with forgone care among Marshallese Islanders. Nationwide being younger; uninsured; unmarried; female; of lower education; Native American or Hispanic (versus White); and residing in the South were associated with not having a usual source of care, whereas only being younger and uninsured were associated with not having a usual source of care among Marshallese Islanders. CONCLUSION: The largest group of diabetic Marshallese Islanders in the continental US faces severe healthcare access inequities necessitating policies that increase access to health insurance options and associated resources.


Subject(s)
Diabetes Mellitus/ethnology , Diabetes Mellitus/therapy , Healthcare Disparities/ethnology , Native Hawaiian or Other Pacific Islander/statistics & numerical data , Transients and Migrants/statistics & numerical data , Adolescent , Adult , Aged , Cross-Sectional Studies , Diabetes Mellitus/diagnosis , Female , Healthcare Disparities/statistics & numerical data , Humans , Male , Middle Aged , Socioeconomic Factors , United States , Young Adult
10.
Cancer ; 126(5): 1077-1089, 2020 03 01.
Article in English | MEDLINE | ID: mdl-31909824

ABSTRACT

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.


Subject(s)
Biomedical Research/statistics & numerical data , Community-Based Participatory Research/statistics & numerical data , Ethnicity/statistics & numerical data , Health Services Accessibility , Healthcare Disparities/statistics & numerical data , Neoplasms/therapy , Patient Participation , Adolescent , Adult , Cancer Care Facilities , Clinical Trials as Topic , Cooperative Behavior , Female , Humans , Male , Middle Aged , National Cancer Institute (U.S.) , Neoplasms/diagnosis , Neoplasms/epidemiology , Patient Selection , Prognosis , Research Design , Socioeconomic Factors , United States/epidemiology , Young Adult
11.
Health Expect ; 23(2): 337-347, 2020 04.
Article in English | MEDLINE | ID: mdl-31800158

ABSTRACT

BACKGROUND: New evidence has found breast and cervical cancer risk factors unique to African American women. Thus, there is a significant need to increase their knowledge and understanding of relevant risk factors and the potential protective benefits associated with breast-feeding and HPV vaccination. The National Witness Project is a robust, evidence- and community-based lay health advisor programme that uses group education, navigation and survivor narratives to increase cancer screening among diverse underserved women. METHODS: A multi-phase, community-based participatory research study was conducted across three sites in Buffalo, NY, New York City and Arkansas between October 2016 and January 2017. Pre-/post-test surveys were administered during volunteer trainings and community programmes. An evaluation survey was also administered at the Annual Meeting for Education and Networking. Paired sample t tests were used to compare pre-/post-test survey scores. RESULTS: Trainee survey results showed the overall mean per cent correct pre-/post-test scores were 47.7% (SD: 21.87) and 79.2% (SD: 16.14). Altogether, 31 educational programmes reached 332 community participants. Participants' breast and cervical cancer knowledge scores were significantly higher after the education programme (84.4%) than before (55.3%) with a mean change score of 29% (P ≤ .001). CONCLUSION: This paper reveals the underlying complexities to update the educational curriculum content of a multi-site, community-based outreach organization. The new curriculum significantly improved African American women's knowledge about breast and cervical cancer by 10%-36%, clearly demonstrating that this information was new to them. The need for education programming in African American communities to disseminate cancer prevention and risk information remains high.


Subject(s)
Breast Neoplasms , Uterine Cervical Neoplasms , Black or African American , Breast Neoplasms/prevention & control , Community-Based Participatory Research , Community-Institutional Relations , Early Detection of Cancer , Female , Health Knowledge, Attitudes, Practice , Humans , Uterine Cervical Neoplasms/prevention & control
12.
Mayo Clin Proc ; 94(11): 2199-2208, 2019 11.
Article in English | MEDLINE | ID: mdl-31685150

ABSTRACT

OBJECTIVE: To evaluate the impact of the sequence of treatment with rituximab and/or splenectomy on time to relapse for patients with steroid-refractory immune thrombocytopenia (ITP). PATIENTS AND METHODS: Patients 18 years or older with steroid-refractory immune thrombocytopenia who underwent treatment with splenectomy or rituximab from January 1, 2002, through December 31, 2015, at Mayo Clinic. Evaluation included freedom from relapse (FFR) and response rates after treatment with rituximab or splenectomy as single or sequential interventions. RESULTS: A total of 218 eligible patients with ITP who were treated according to standard of care were included in this analysis. Patients failing steroids treated with splenectomy had a higher 5-year FFR than did those treated with rituximab (67.4% vs 19.2%; P<.001, propensity-score matched). Patients who failed splenectomy and were then treated with rituximab had a 2-year FFR similar to that of patients who failed rituximab and were then treated with splenectomy (73.4% vs 59.9%; P=.52). Patients treated with rituximab after splenectomy had a longer 2-year FFR than did patients treated with rituximab as a second-line treatment (73.4% vs 29.0%; P<.001). CONCLUSION: For patients with ITP that relapse after treatment with steroids, splenectomy provides longer FFR than rituximab as a second-line therapy. Among patients who fail second-line treatment with splenectomy or rituximab, those who end up receiving sequential splenectomy-rituximab or rituximab-splenectomy therapy seem to derive similar benefit in the long term. Patients who received rituximab after splenectomy seem to derive superior benefit than do those who are treated with rituximab with an intact spleen.


Subject(s)
Immunosuppressive Agents/therapeutic use , Purpura, Thrombocytopenic, Idiopathic/therapy , Rituximab/therapeutic use , Splenectomy/methods , Steroids/therapeutic use , Adult , Combined Modality Therapy , Female , Humans , Middle Aged , Purpura, Thrombocytopenic, Idiopathic/physiopathology , Survival Analysis , Treatment Outcome
13.
Ann Surg Oncol ; 26(4): 1063-1070, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30603814

ABSTRACT

INTRODUCTION: The cytoreduction and hyperthermic intraperitoneal chemotherapy (CS/HIPEC) procedure is complex, involving lengthy preparation and recovery in a heterogeneous patient group. Understanding the patient experience is essential to improving interactions with health professionals that is critical to recovery. OBJECTIVE: This study sought to characterize the early recovery and return to quality of life (at 3 and 6-12 months post-surgery, respectively) in patients having undergone CS/HIPEC, through structured interviews. METHODS: Two sets of interviews were conducted among 20 CS/HIPEC patients. Interviews were uploaded into QSR NVivo 10 qualitative software (QSR International, Australia) and coded by two study personnel. Interview 1 focused on initial treatment decision making and postoperative hospitalization, while interview 2 focused on recovery, supports, and return to quality of life. RESULTS: Among the participants, 60% were female and the mean age was 57 years (range 31-71). Diagnoses included disseminated peritoneal adenomucinosis (n = 6), appendiceal adenocarcinoma (n = 4), colorectal adenocarcinoma (n = 6), goblet cell (n = 2), and mesothelioma (n = 2). The first interview identified common themes of perioperative psychosocial isolation, lack of direction, and the importance of an established support system. Patients requested printed and audiovisual materials focused on addressing expectations. The main findings from the second interview captured patient experiences with longer-term complications, as well as surveillance. CONCLUSION: Focused interviews with patients recently having undergone CS/HIPEC identified key issues that may be addressed in programs to improve the patient experience. These issues were distinctly different in relation to phase of recovery, and patient-centered programs designed with these factors in mind have the potential to enhance the recovery process.


Subject(s)
Chemotherapy, Cancer, Regional Perfusion/mortality , Cytoreduction Surgical Procedures/mortality , Hyperthermia, Induced/mortality , Neoplasms/therapy , Patient-Centered Care/standards , Peritoneal Neoplasms/therapy , Adult , Aged , Chemotherapy, Adjuvant , Combined Modality Therapy , Female , Follow-Up Studies , Humans , Male , Middle Aged , Neoplasms/pathology , Peritoneal Neoplasms/secondary , Prognosis , Survival Rate
14.
J Cancer Educ ; 34(6): 1120-1129, 2019 Dec.
Article in English | MEDLINE | ID: mdl-30144005

ABSTRACT

Racial/ethnic minorities are underrepresented in clinical research in the USA for multifarious reasons, including barriers to effective communication between researchers and potential research participants. To address the communication barriers between researchers and potential participants, we developed a Research Literacy Support (RLS) tool. The focus of this report is to present findings from the second and third phases of development that refined and assessed usability of the RLS tool. We utilized a mixed-methods approach that entailed iterative cognitive testing with participants (N = 52) from diverse racial/ethnic backgrounds and interviews with clinical research recruiters (N = 20) to modify and refine the design and content of the RLS tool (phase 2). This was followed by assessment of the usability of the RLS tool by 100 participants (phase 3). During phase 2, participants provided feedback about layout, word choice, and comprehension of the tool. In phase 3, participants recognized that they had gained knowledge about clinical research from the RLS tool, although they still had a substantial learning gap after using the tool, indicating an opportunity for further refinement. The RLS tool may help advance health equity by addressing communication barriers that may impede minority participation in clinical research.


Subject(s)
Biological Specimen Banks/standards , Biomedical Research/standards , Communication Barriers , Literacy/standards , Minority Groups/education , Minority Groups/psychology , Research Personnel/psychology , Adult , Clinical Trials as Topic , Female , Humans , Male , Middle Aged , Young Adult
15.
J Natl Med Assoc ; 111(3): 234-245, 2019 Jun.
Article in English | MEDLINE | ID: mdl-30420078

ABSTRACT

BACKGROUND: Little is known about how pre-resettlement experiences affect refugees' uptake of cancer screenings. The objective of this study was to characterize Somali Bantu and Karen experiences with cancer and cancer screenings prior to and subsequent to resettlement in Buffalo, NY in order to inform engagement by health providers. METHODS: The study was grounded in a community-based participatory research approach, with data collection and analysis guided by the Health Belief Model and life course framework. Interviews were transcribed, independently coded by two researchers, and analyzed using an immersion-crystallization approach. We conducted 15 semi-structured interviews and six interview-focus group hybrids with Somali Bantu (n = 15) and Karen (n = 15) individuals who were predominantly female (87%). RESULTS: Cancer awareness was more prevalent among Karen compared to Somali Bantu participants. Prior to resettlement, preventative health care, including cancer screening, and treatment were unavailable or inaccessible to participants and a low priority compared with survival and acute health threats. There, Somali Bantu treated cancer-like diseases with traditional medicine (heated objects, poultices), and Karen reported traditional medicine and even late-stage biomedical treatments were ineffective due to extent of progressed, late-stage ulcerated tumors when care was sought. A fatalistic view of cancer was intertwined with faith (Somali Bantu) and associated with untreated, late-stage cancer (Karen). Karen but not Somali Bantu reported individuals living with cancer were stigmatized pre-resettlement due to the unpleasant manifestations of untreated, ulcerated tumors. Now resettled in the U.S., participants reported obtaining cancer screenings was challenged by transportation and communication barriers and facilitated by having insurance and interpretation services. While Somali Bantu women strongly preferred a female provider for screenings, Karen women felt cancer severity outweighed cultural modesty concerns in terms of provider gender. SIGNIFICANCE: Our findings suggest the need for culturally-relevant cancer education that incorporates the life course experiences and addresses logistical barriers in linking individuals with screening, to be complemented by trauma-informed care approaches by healthcare providers.


Subject(s)
Early Detection of Cancer , Refugees , Adult , Community-Based Participatory Research , Early Detection of Cancer/psychology , Female , Focus Groups , Humans , Interviews as Topic , Male , Medicine, African Traditional , Middle Aged , Neoplasms/prevention & control , Neoplasms/psychology , New York , Refugees/psychology , Somalia/ethnology , Young Adult
16.
Prev Med ; 114: 102-106, 2018 09.
Article in English | MEDLINE | ID: mdl-29953897

ABSTRACT

We examined the use of automated voice recognition (AVR) messages targeting smokers from primary care practices located in underserved urban and rural communities to promote smoking cessation. We partnered with urban and rural primary care medical offices (n = 7) interested in offering this service to patients. Current smokers, 18 years and older, who had completed an office visit within the previous 12 months, from these sites were used to create a smoker's registry. Smokers were recruited within an eight county region of western New York State between June 2012 and August 2013. Participants were contacted over six month intervals using the AVR system. Among 5812 smokers accrued 1899 (32%) were reached through the AVR system and 55% (n = 1049) continued to receive calls. Smokers with race other than white or African American were less likely to be reached (OR = 0.71, 0.57-0.90), while smokers ages 40 and over were more likely to be reached. Females (OR = 0.78, 0.65-0.95) and persons over age 40 years were less likely to opt out, while rural smokers were more likely to opt out (OR = 3.84, 3.01-4.90). Among those receiving AVR calls, 30% reported smoke free (self-reported abstinence over a 24 h period) at last contact; smokers from rural areas were more likely to report being smoke free (OR = 1.41, 1.01-1.97). An AVR-based smoking cessation intervention provided added value beyond typical tobacco cessation efforts available in these primary care offices. This intervention required no additional clinical staff time and served to satisfy a component of patient center medical home requirements for practices.


Subject(s)
Primary Health Care/statistics & numerical data , Rural Population/statistics & numerical data , Smoking Cessation/methods , Telemedicine , Urban Population/statistics & numerical data , Adult , Aged , Counseling/methods , Female , Humans , Male , Middle Aged , New York , Smokers/statistics & numerical data , Tobacco Use Cessation Devices
17.
Prev Med Rep ; 10: 157-161, 2018 Jun.
Article in English | MEDLINE | ID: mdl-29868360

ABSTRACT

This pilot study was undertaken to identify characteristics and approaches (e.g., social, behavioral, and/or systems factors) which differentiate primary care medical offices achieving higher rates of HPV vaccination. Eligible primary care practice sites providing care to adolescent patients were recruited within an eight county region of western New York State between June 2016 and July 2016. Practice sites were categorized as higher (n = 3) or lower performing (n = 2) based on three dose series completion rates for HPV vaccinations among females aged 13-17 years. Interviewer administered surveys were completed with office staff (n = 37) and focused on understanding approaches to adolescent vaccination. Results were summarized using basic descriptive statistics. Higher performing offices reported more full-time clinical staff (median = 25 vs. 9.5 in lower performing clinics), larger panels of patients ages 11-17 years (median = 3541 vs. 925) and completion of NYSIIS data entry within two weeks of vaccination. (less than a month vs. two). Staff in higher performing offices reviewed medical charts prior to scheduled visits (100% vs. 50) and identified their office vaccine champion as a physician and/or a nurse manager (75% vs. 22%). Also, staffs from higher performing offices were more likely to report the combination of having an office vaccine champion, previewing charts and using standing orders. These preliminary findings support future research examining implementation of organizational processes including identifying a vaccine champion, using standing orders and previewing medical charts prior to office visits as strategies to increase rates of HPV vaccination in primary care offices.

18.
J Cancer Educ ; 33(1): 44-51, 2018 02.
Article in English | MEDLINE | ID: mdl-27392418

ABSTRACT

Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.


Subject(s)
Biological Specimen Banks , Biomedical Research , Clinical Trials as Topic , Indians, North American , Neoplasms/ethnology , Patient Selection , Female , Health Care Surveys , Humans , Interviews as Topic , Male , Minority Groups , Neoplasms/prevention & control , Professional-Patient Relations , Trust , United States , Urban Population
19.
J Cancer Educ ; 33(2): 332-339, 2018 04.
Article in English | MEDLINE | ID: mdl-27640203

ABSTRACT

Human papillomavirus (HPV)-related morbidity and mortality remain a significant public health burden despite the availability of HPV vaccines for cancer prevention. We engaged clinicians and parents to identify barriers and opportunities related to adolescent HPV vaccination within a focused geographic region. This mixed-method study design used an interviewer-administered semi-structured interview with clinicians (n = 52) and a written self-administered survey with similar items completed by parents (n = 54). Items focused on experiences, opinions, and ideas about HPV vaccine utilization in the clinical setting, family, and patient perceptions about HPV vaccination and potential future efforts to increase vaccine utilization. Quantitative items were analyzed using descriptive statistics, while qualitative content was analyzed thematically. Suggested solutions for achieving higher rates of HPV vaccination noted by clinicians included public health education, the removal of stigma associated with vaccines, media endorsements, and targeting parents as the primary focus of educational messages. Parents expressed the need for more information about HPV-related disease, HPV vaccines, vaccine safety, sexual concerns, and countering misinformation on social media. Results from this mixed-method study affirm that educational campaigns targeting both health care professionals and parents represent a key facilitator for promoting HPV vaccination; disease burden and cancer prevention emerged as key themes for this messaging.


Subject(s)
Health Education , Health Knowledge, Attitudes, Practice , Health Personnel/psychology , Papillomavirus Infections/prevention & control , Papillomavirus Vaccines/administration & dosage , Parents/psychology , Vaccination/statistics & numerical data , Adolescent , Adult , Female , Humans , Male , Middle Aged , Papillomaviridae/isolation & purification , Papillomavirus Infections/virology , Patient Acceptance of Health Care/statistics & numerical data , Perception , Surveys and Questionnaires , Young Adult
20.
J Community Genet ; 7(4): 271-277, 2016 Oct.
Article in English | MEDLINE | ID: mdl-27488840

ABSTRACT

The disproportionately lower number of certain subpopulations participating in clinical and prevention research has a significant impact on the representativeness of scientific outcomes. The Hoy y Mañana program (Today and Tomorrow) was developed as a culturally and linguistically appropriate education program to engage diverse medically underserved populations without a cancer diagnosis in biospecimen donation for cancer genomic research. Participants were recruited to in-depth community-based educational programs (∼45-60-min duration) or during open events in the community based on a convenience sampling. Programs were offered in English and Spanish. An on-site mobile lab along with phlebotomy services was provided at all programs and events to collect participant biospecimen (blood) samples to be stored at the cancer center's Data Bank and BioRepository (DBBR). The distributions for education, race/ethnicity, and gender were similar across the event types. Most of the participants were women. The analysis sample had a total of 311 participants, including 231 from the education programs and 80 participants from open events. Those with a higher education (college or more) were more likely to donate than those with a lower level of education (high school or less) (45 vs 28 %, p = 0.007). Actual donation status was not associated with age or race. Willingness to donate a biospecimen and biospecimen donation rates followed the same pattern with respect to participants with higher levels of education being more willing to donate and giving a blood donation. Prior to outreach efforts, less than 6 % of specimens donated to DBBR from healthy/non-cancer patients were from minority participants.

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