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PURPOSE: Cancer survivors experience better outcomes when primary care providers (PCPs) are engaged in their care. Nearly all survivors have a PCP engaged in their care in the initial 5 years postdiagnosis, but little is known about sustained PCP engagement. We assessed PCP engagement in survivors' care 5-7 years postdiagnosis and characterized survivors most vulnerable to loss to PCP follow-up. METHODS: We linked electronic health record ambulatory care and cancer registry data from an National Cancer Institute-Designated Comprehensive Cancer Center to identify eligible survivors (≥18 years; diagnosed with breast, colorectal, or uterine cancer; had an in-network PCP). We used multiple logistic regression to assess associations between survivor demographics, clinical factors, and health care utilization and odds of sustained PCP engagement. RESULTS: In 5-7 years postdiagnosis, PCPs were engaged in care for 43% of survivors. Survivors with sustained PCP-engagement were on average 4.6 years older than those without (P < .0001); survivors had 1.36 greater odds of having regular PCP visits for each decade increase in age on cancer diagnosis (P = .0030). Survivors were less likely to be lost to PCP follow-up if diagnosed at an earlier stage with odds at 0.57 and 0.10 for stage I and stage IV, respectively (P = .0005), and had 2.70 greater odds of engagement in care with at least one oncology visit annually 5-7 years postdiagnosis (P < .0001). CONCLUSION: Sustained PCP engagement is endorsed as critical by survivors, PCPs, and oncologists. We found most survivors were lost to PCP follow-up 5-7 years postdiagnosis. Our study is among the first to contribute empirical evidence of survivors being lost in transition. Findings from this study demonstrate the need to bridge gaps in long-term care for cancer survivors.
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PURPOSE OF REVIEW: Patient navigation promotes access to timely treatment of chronic diseases by eliminating barriers to care. Patient navigation programs have been well-established in improving screening rates and diagnostic resolution. This systematic review aimed to characterize the multifaceted role of patient navigators within the realm of cancer treatment. RECENT FINDINGS: A comprehensive electronic literature review of PubMed and Embase databases was conducted to identify relevant studies investigating the role of patient navigators in cancer treatment from August 1, 2009 to March 27, 2023. Fifty-nine articles were included in this review. Amongst studies focused on cancer treatment initiation, 70% found a significant improvement in treatment initiation amongst patients who were enrolled in patient navigation programs, 71% of studies focused on treatment adherence demonstrated significant improvements in treatment adherence, 87% of studies investigating patient satisfaction showed significant benefits, and 81% of studies reported a positive impact of patient navigators on quality care indicators. Three palliative care studies found beneficial effects of patient navigation. Thirty-seven studies investigated disadvantaged populations, with 76% of them concluded that patient navigators made a positive impact during treatment. This systematic review provides compelling evidence supporting the value of patient navigation programs in cancer treatment. The findings suggest that patient navigation plays a crucial role in improving access to care and optimizing treatment outcomes, especially for disadvantaged cancer patients. Incorporating patient navigation into standard oncology practice can reduce disparities and improve the overall quality of cancer care.
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Neoplasias , Navegação de Pacientes , Humanos , Neoplasias/terapia , Acessibilidade aos Serviços de Saúde , Satisfação do PacienteRESUMO
Purpose: Costs of Papanicolaou (Pap) tests and mammograms are a primary barrier for women aged 18-39 seeking screening and diagnostic services. Race/ethnicity and rural/border resident status compound their risks for delayed diagnosis, possibly resulting in higher mortality. Methods: We analyzed cross-sectional data from young adult (YA) women (aged 18-39) from a cancer education and patient navigation (PN) program in rural and border Texas from 2012 to 2016. Descriptive statistics, Chi-square tests, and logistic regressions summarized sociodemographic variables and receipt of PN, Pap tests, and mammograms. Results: The sample consisted of 1181 women aged 31.8 years (standard deviation 5.5) on average. A total of 795 (67.3%) received PN, 494 (41.8%) received a Pap test, and 121 (10.3%) received a mammogram. The YA women attending the program due to cost (odds ratio [OR]: 7.24; confidence interval [CI]: 4.74-11.05) and reporting 1 (OR: 3.84; CI: 2.40-6.14) or 2+ barriers (OR: 6.00; CI: 3.61-9.99) had higher odds of being navigated than those not concerned about cost and not identifying a barrier. The YA women attending due to cost (OR: 2.22, CI: 1.61-3.05) and receiving navigation (OR: 1.92; CI: 1.29-2.84) had higher odds of receiving a Pap test than their counterparts. The majority receiving a mammogram were worried about cost (85.1%); 40.5% had a family history of breast cancer, and a doctor or nurse recommended a mammogram for 15.7%. Conclusion: Detection of cervical and breast cancer in YA women residing in rural and border Texas may be improved with PN to assist with financial barriers to care and service coordination.
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Neoplasias da Mama , Teste de Papanicolaou , Feminino , Adulto Jovem , Humanos , Texas , Esfregaço Vaginal , Estudos Transversais , Neoplasias da Mama/diagnósticoRESUMO
Background: Little research exists on delayed and forgone health and mental health care due to cost among rural cancer survivors. Methods: We surveyed survivors in 7 primarily rural, Appalachian counties February to May 2020. Univariable analyses examined the distribution and prevalence of delayed/forgone care due to cost in the past year by independent variables. Chi-square or Fisher's tests examined bivariable differences. Logistic regressions assessed the odds of delayed/forgone care due to cost. Results: Respondents (n=428), aged 68.6 years on average (SD: 12.0), were 96.3% non-Hispanic white and 49.8% female; 25.0% reported delayed/forgone care due to cost. The response rate was 18.5%. The proportion of delayed/forgone care for those aged 18-64 years was 46.7% and 15.0% for those aged 65+ years (P<0.0001). Females aged 65+ years (OR: 2.00; CI: 1.02-3.93) had double the odds of delayed/forgone care due to cost compared to males aged 65+ years. Conclusion: About one in four rural cancer survivors reported delayed/forgone care due to cost, with rates approaching 50% in survivors aged <65 years. Impact: Clinical implications indicate the need to: 1) ask about the impact of care costs, and 2) provide supportive services to mitigate effects of treatment costs, particularly for younger and female survivors.
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Unconditional (upfront) incentives are proposed to improve acceptance of cancer research among underrepresented, racial/ethnic minority populations, but few studies have tested incentive strategies among rural cancer survivors. Descriptive statistics summarized demographic characteristics of survey respondents, and response rates by arm were compared using Chi-square tests. We compared upfront ($2) and response-based ($10 conditional) incentives in a mailed survey of adult post-treatment rural survivors. Individuals meeting eligibility criteria from the electronic medical record (n = 2,830) were randomized into two incentive arms (n = 1,414 for the upfront arm and n = 1,416 for the contingent arm). Of the total delivered, presumed eligible participants (n = 1,304 upfront arm; n = 1,317 contingent arm), 67.8% were aged 65y+, 49.8% were female, and 95.1% were non-Hispanic white. The response rate for all participants was 18.5%. We received eligible surveys from 281 rural survivors in the first arm (response rate: 21.5%); and 205 surveys in the second arm (response rate: 15.6%). Participants who received the upfront incentive had a higher response rate than those receiving a response-based incentive, X2 (1, 2,621) = 15.53, p < 0.0001. Incentivizing survey completion with an upfront $2 bill encouraged a higher survey response rate; other supplemental strategies are needed to achieve a higher response rate for this population.
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Sobreviventes de Câncer , Neoplasias , Adulto , Etnicidade , Feminino , Humanos , Masculino , Grupos Minoritários , Motivação , Neoplasias/terapia , Inquéritos e QuestionáriosRESUMO
The study examined the impact of (1) county-level poverty rates and (2) patient navigation on breast and cervical cancer screening outcomes for women in rural and border counties in Texas reporting barriers to screening.Univariate analyses described the distribution and screening prevalence rates in the sample, while a series of random intercept logistic regression models analyzed mammogram (N = 2326 women aged 40+) and Papanicolaou (Pap; N = 2959 women aged 21-64) screening separately.Mammogram and Pap screening prevalence rates were highest among women who were aged 40-64, Spanish-speaking Latinas, lower educated, attending cancer education events because of the cost of the screenings, patient navigation recipients, living in the south region of Texas, and in counties with high poverty. Although models indicated significant variability in screening rates by county, county-level poverty was only significantly associated with odds of getting Pap screening in adjusted models. Not receiving patient navigation vs. receiving it was associated with lower odds for both mammogram (OR: 0.51, CI: 0.38-0.70) and Pap (OR: 0.69, CI: 0.50-0.94) screenings.County-level variation in screening rates exists for both mammogram and Pap tests and should be considered in the development and implementation of screening interventions in rural and border areas. However, other factors beyond poverty levels may explain the variation.
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Neoplasias da Mama , Navegação de Pacientes , Neoplasias do Colo do Útero , Adulto , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Detecção Precoce de Câncer , Feminino , Educação em Saúde , Humanos , Programas de Rastreamento , Pessoa de Meia-Idade , Teste de Papanicolaou , Pobreza , Texas/epidemiologia , Neoplasias do Colo do Útero/diagnóstico , Neoplasias do Colo do Útero/prevenção & controle , Esfregaço Vaginal , Adulto JovemRESUMO
This study examines breast and cervical cancer screening uptake in a cancer education and patient navigation (PN) program for residents of rural and border counties in Texas by level of participation (education only, PN only, or education and PN). Data collected from March 1, 2012, to November 5, 2016, included 6663 follow-up surveys from participants aged 21-74. Logistic regression models assessed program participation on the odds of completing breast or cervical cancer screening. For women aged 40-74 years (N = 4942; mean age = 52 years), 58.4% reported a mammogram within 6 months on average from initial contact. In the breast cancer screening model, women who only received PN (OR: 6.06, CI: 4.87-7.53) or who participated in both the education plus PN program (OR: 3.33, CI: 2.77-4.02) had higher odds of mammogram screening compared to women who only received education. For women aged 21-64 years (N = 6169; mean age = 46 years), 37.7% received a Papanicolaou (Pap) test within 6 months on average from initial contact. In the Pap screening model, both education and PN (OR: 3.23, CI: 2.66-3.91) and PN only (OR: 2.35, CI: 1.88-2.93) groups had higher odds of screening for cervical cancer compared to those only receiving education. Graphed predicted probabilities examined significant interactions between race/ethnicity/language and program participation (P < 0.0001) for both screenings. PN, solely or in combination with education, is an effective strategy to increase screening for breast and cervical cancer, beyond educational outreach efforts alone, among un-/underserved, racially/ethnically diverse women in rural and border Texas counties.
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Neoplasias da Mama , Navegação de Pacientes , Neoplasias do Colo do Útero , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Detecção Precoce de Câncer , Feminino , Humanos , Programas de Rastreamento , Pessoa de Meia-Idade , Teste de Papanicolaou , Texas , Neoplasias do Colo do Útero/diagnóstico , Neoplasias do Colo do Útero/prevenção & controle , Esfregaço VaginalRESUMO
This study aimed to determine if the current health-related quality of life (HRQoL) tools created for survivors of testicular cancer are collecting the highest quality of data via a two-step methodological critique of both the seminal studies that produced a survivor of testicular cancer HRQoL tool (Phase 1) and the actual tool itself (Phase 2). It is the goal of this current article to present and discuss Phase 1.A systematic review aimed to assess the methodological quality of studies conducted to create instruments used to measure survivors of testicular cancer HRQoL. Five reviewers independently assessed each study with the 20-item Appraisal Tool for Cross-Sectional Studies (AXIS). Inter-rater agreement and Fleiss' kappa was also assessed to ensure consistency in reported scores. Assessments for the EORTC QLQ-TC 26 and CAYA-T studies were low (AXIS 52.5%; IRA 95%; κ = 0.779) and fair (AXIS 65%; IRA 80%; κ = 0.599), respectively. Critical appraisal of the scales included issues within the three core AXIS domains. Primary concerns related to sampling methodology and the lack of a qualitative component of their core conceptual development phase.Both reviewed seminal studies have significant methodological concerns that question the tools' quality. Next steps include extensive appraisal of the psychometric properties of the EORTC QLQ TC-26 and the CAYA-T to complete the comprehensive review. Accurate and reliable data are necessary to understand survivor of testicular cancer HRQoL and assist in building the bridge of communication between health care professionals and survivors to help to improve patient outcomes.
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Sobreviventes de Câncer/psicologia , Qualidade de Vida/psicologia , Neoplasias Testiculares/terapia , Estudos Transversais , Humanos , Masculino , Inquéritos e Questionários , Neoplasias Testiculares/psicologiaRESUMO
OBJECTIVE: This study assessed differences in employment outcomes among cancer survivors using data from a nationally representative sample. METHODS: The 2011 Medical Expenditure Panel Survey (MEPS) data and the 2011 MEPS Experiences with Cancer Survivorship Supplement representing 3,360,465 people in the US population were analyzed to evaluate factors associated with unemployment among cancer survivors during the 5 years following diagnosis and treatment. The sample included adults 1) diagnosed with cancer within 5 years prior to survey completion and 2) engaged in paid employment since diagnosis. Individuals diagnosed with nonmelanoma skin cancer (n=33) were excluded from analyses. RESULTS: Data of 221 cancer survivors were used to identify factors associated with employment status at the time respondents were employed (n=155) vs unemployed (n=66). Results of bivariate analyses indicated that unemployed survivors were older, more likely to be women, more likely to be uninsured at the time of cancer diagnosis, and to report lower incomes than cancer survivors who continue to be employed. Unemployed survivors were more likely than employed survivors to have had anxiety about being forced to retire or quit early when they were employed because of cancer and to report cancer-related interference with physical and mental aspects of their job tasks; unemployed survivors also took less paid time off and were less likely to change to a flexible job schedule when they were employed. In multiple logistic regression analyses, worry about being forced to retire (protective), worry that cancer recurrence will interfere with home or work responsibilities (risk), and change to a flexible work schedule (risk) following cancer diagnosis were associated with unemployment after controlling for demographic differences between employed and unemployed cancer survivors. CONCLUSION: Findings of this study highlight the extent to which the challenges of managing the cancer-work interface create challenges to employment among cancer survivors and may lead to long-term unemployment among cancer survivors. Future studies should evaluate the strategies that the survivors could use to manage the cancer-work interface during cancer treatment to attain medical, psychological, social, and employment outcomes.
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Reviews have assessed studies of breast and cervical cancer screening access and utilization for rural women, but none analyze interventions to increase screening rates. A mixed methods literature search identified studies of breast and/or cervical cancer prevention education and patient navigation interventions for rural women. Rural areas need greater implementation and evaluation of screening interventions as these services address the challenges of delivering patient-centered cancer care to un-/underserved communities. The lack of intervention studies on breast and cervical cancer education and patient navigation programs compared to urban studies highlights the need for validation of these programs among diverse, rural populations.
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Neoplasias da Mama/prevenção & controle , Detecção Precoce de Câncer , Navegação de Pacientes , População Rural , Neoplasias do Colo do Útero/prevenção & controle , Bases de Dados Factuais , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Assistência Centrada no PacienteRESUMO
The Friend to Friend plus Patient Navigation Program (FTF+PN) aims to build an effective, sustainable infrastructure to increase breast and cervical screening rates for underserved women in rural Texas. The objective of this paper is to identify factors that (1) distinguish participants who chose patient navigation (PN) services from those who did not (non-PN) and (2) were associated with receiving a mammogram or Papanicolaou (Pap) test. This prospective study analyzed data collected from 2689 FTF+PN participants aged 18-99 years from March 1, 2012 to February 28, 2015 who self-identified as African American (AA), Latina, and non-Hispanic white (NHW). Women who were younger, AA or Latina, had less than some college education, attended a FTF+PN event because of the cost of screening or were told they needed a screening, and who reported a barrier to screening had higher odds of being a PN participant. Women who were PN participants and had more contacts with program staff had greater odds of receiving a mammogram and a Pap compared with their reference groups. Latina English-speaking women had lower odds of receiving a mammogram and a Pap compared with NHW women and Latina Spanish-speaking women had higher odds of receiving a Pap test compared with NHW women. Women with greater need chose PN services, and PN participants had higher odds of getting a screening compared with women who did not choose PN services. These results demonstrate the success of PN in screening women in rural Texas but also that racial/ethnic disparities in screening remain.