183 results on '"Kent, Erin E."'
Search Results
2. Short-term effects of comprehensive caregiver supports on caregiver outcomes
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Miller, Katherine E. M., Houtven, Courtney H. Van, Kent, Erin E., Gilleskie, Donna, Holmes, G. Mark, Smith, Valerie A., and Stearns, Sally C.
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Medical care, Cost of -- Research ,Health care reform -- Research ,Medical research ,Medicine, Experimental ,Health care industry -- Research ,Psychiatric services -- Research ,Caregivers -- Research ,Health care industry ,Business - Abstract
Objective: To estimate the association of the Veterans Health Administration (VHA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) implemented in 2011 with caregiver health and health care use. Data Sources: VHA claims and electronic health records from May 2009 to May 2018. Study Design: Using a retrospective, pre-post study design with inverse probability of treatment weights to address selection into treatment, we examine the association of PCAFC on caregivers who are veterans: (1) outpatient primary, specialty, and mental health care visits; (2) probability of uncontrolled hypertension and anxiety/depression; and (3) VHA health care costs. We compare outcomes for caregivers approved for PCAFC (treatment) to caregivers denied PCAFC (comparison). Data Collection/Extraction Methods: Not applicable. Principal Findings: In the year pre-application, we observe similar probabilities of having any VHA primary care (~36%), VHA specialty care (~24%), and VHA or VHA-purchased mental health care (~22%) for treatment and comparison caregivers. In the year post-application, treated caregivers had a 5.89 percentage point larger probability of any outpatient VHA primary care (p = 0.002) and 4.34 percentage points larger probability of any outpatient mental health care use (p = 0.014). Post-application, probabilities of having uncontrolled hypertension or diagnosed anxiety/depression were higher for both treated and comparison groups. In the second year post-application, treated caregivers had a 1.88 percentage point larger probability of uncontrolled hypertension (p = 0.019) and 4.68 percentage points larger probability of diagnosed anxiety/depression (predicted probabilities: treated = 0.30; comparison = 0.25; p = 0.005). We find no evidence of differences in VHA total costs by PCAFC status. Conclusions: Our findings that PCAFC enrollment is associated with increased health care diagnosis and service use may reflect improved access for previously unmet needs in the population of veteran caregivers for veterans in PCAFC. The costs and value of these increases can be weighed against other effects of the program to inform national policies supporting caregivers. KEYWORDS access to care, anxiety, caregivers, depression, health care costs, veterans What is known on this topic * Prior research found the Veterans Health Administration (VHA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) improves veteran care-recipients' access to care and increases total VHA costs. * Compared with non-caregivers, family caregivers of older adults, typically spouses, experience adverse mental health and physical health outcomes, yet the health effects of caregiving on younger caregivers are unknown. What this study adds * By restricting the sample to caregivers and care-recipients who are both veterans in the VHA system, we estimate caregiver health outcomes while controlling for care-recipient and caregiver characteristics of predominately non-elderly, spousal caregivers. * We find enrollment in PCAFC is associated with increased outpatient care use and increased diagnosed anxiety/depression among these caregivers., 1 | INTRODUCTION In 2014, an estimated 1.1 million friends or family members of US veterans were family caregivers providing uncompensated care to veterans who served post-9/11. (1) Compared with [...]
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- 2023
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3. “They don't care to study it”: Trust, race, and health care experiences among patient‐caregiver dyads with multiple myeloma
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Grant, Shakira J., primary, Mills, Jiona A., additional, Telfair, Joseph, additional, Erisnor, Gabriell, additional, Wildes, Tanya M., additional, Bates‐Fraser, Lauren C., additional, Olshan, Andrew F., additional, Kent, Erin E., additional, Muss, Hyman B., additional, and Mihas, Paul, additional
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- 2024
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4. Cancer clinical trial providers’ perspectives on communicating goals of care: A key informant study
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Chou, Wen-Ying Sylvia, Falisi, Angela L., Castro, Kathleen, Ferrer, Rebecca A., Gaysynsky, Anna, Huang, Grace C., Mollica, Michelle A., Peterson, Emily B., and Kent, Erin E.
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- 2022
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5. Examining colorectal cancer survivors’ surveillance patterns and experiences of care: a SEER-CAHPS study
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Mollica, Michelle A, Enewold, Lindsey R, Lines, Lisa M, Halpern, Michael T, Schumacher, Jessica R, Hays, Ron D, Gibson, James T, Schussler, Nicola, and Kent, Erin E
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Biomedical and Clinical Sciences ,Health Services and Systems ,Public Health ,Clinical Sciences ,Health Sciences ,Health Services ,Colo-Rectal Cancer ,Clinical Research ,Aging ,Digestive Diseases ,Prevention ,Cancer ,Patient Safety ,7.1 Individual care needs ,Management of diseases and conditions ,Good Health and Well Being ,Aged ,Cancer Survivors ,Colonoscopy ,Colorectal Neoplasms ,Continuity of Patient Care ,Female ,Humans ,Male ,Medicare ,Physician-Patient Relations ,Registries ,SEER Program ,United States ,Colon cancer ,Rectal cancer ,Surveillance ,Guideline adherence ,Patient experiences ,Oncology and Carcinogenesis ,Public Health and Health Services ,Epidemiology ,Oncology and carcinogenesis - Abstract
PurposeWe examined associations between experiences of care and adherence to surveillance guidelines among Medicare Fee-For-Service beneficiaries with colorectal cancer (CRC).MethodsUsing linked data from the National Cancer Institute's Surveillance, Epidemiology, and End results (SEER) cancer registry program and the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient experience surveys (SEER-CAHPS), we identified local/regional CRC survivors diagnosed in 1999-2009 aged 65+, who underwent surgical resection and completed a CAHPS survey
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- 2017
6. Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study
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Wettergren, Lena, Kent, Erin E, Mitchell, Sandra A, Zebrack, Brad, Lynch, Charles F, Rubenstein, Mara B, Keegan, Theresa HM, Wu, Xiao‐Cheng, Parsons, Helen M, Smith, Ashley Wilder, and Group, the AYA HOPE Study Collaborative
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Biomedical and Clinical Sciences ,Clinical Research ,Pediatric ,Cancer ,Behavioral and Social Science ,Prevention ,7.1 Individual care needs ,Management of diseases and conditions ,Good Health and Well Being ,Adaptation ,Psychological ,Adolescent ,Adult ,Cancer Survivors ,Cohort Studies ,Fatigue ,Female ,Humans ,Interpersonal Relations ,Logistic Models ,Male ,Neoplasms ,Personal Satisfaction ,Sexual Dysfunctions ,Psychological ,Young Adult ,AYA HOPE Study Collaborative Group ,cancer ,complications ,oncology ,sexuality ,survivors ,young adults ,Clinical Sciences ,Oncology and Carcinogenesis ,Psychology ,Oncology & Carcinogenesis ,Biomedical and clinical sciences - Abstract
ObjectiveThis cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes.MethodsParticipants (n = 465, ages 15-39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2 years post-cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2 years post-diagnosis.ResultsForty-nine percent of AYAs reported negative effects on sexual function at 1 year post-cancer diagnosis and 70% of those persisted in their negative perceptions 2 years after diagnosis. Those reporting a negative impact at 2 years were more likely to be 25 years or older (OR, 2.53; 95% CI, 1.44-4.42), currently not raising children (OR, 1.81; 95% CI, 1.06-3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975-0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97-4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function.ConclusionsMany AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2 years following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright © 2016 John Wiley & Sons, Ltd.
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- 2017
7. LGBTQ+ inequity in crowdfunding cancer costs: The influence of online reach and LGBTQ+ state policy
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Waters, Austin R., primary, Easterly, Caleb W., additional, Turner, Cindy, additional, Ghazal, Lauren, additional, Tovar, Ida, additional, Mulvaney, Megan, additional, Poquadeck, Matt, additional, Rains, Stephen A., additional, Cloyes, Kristin G., additional, Kirchhoff, Anne C., additional, Kent, Erin E., additional, and Warner, Echo L., additional
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- 2024
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8. Random survival forests using linked data to measure illness burden among individuals before or after a cancer diagnosis: Development and internal validation of the SEER-CAHPS illness burden index
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Lines, Lisa M., Cohen, Julia, Kirschner, Justin, Halpern, Michael T., Kent, Erin E., Mollica, Michelle A., and Smith, Ashley Wilder
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- 2021
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9. Sociodemographic disparities in survival for adolescents and young adults with cancer differ by health insurance status
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DeRouen, Mindy C, Parsons, Helen M, Kent, Erin E, Pollock, Brad H, and Keegan, Theresa HM
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Public Health ,Health Sciences ,Basic Behavioral and Social Science ,Pediatric ,Cancer ,Prevention ,Behavioral and Social Science ,Adolescent ,Adult ,Black or African American ,Asian People ,California ,Female ,Healthcare Disparities ,Hispanic or Latino ,Humans ,Insurance ,Health ,Male ,Neoplasms ,Residence Characteristics ,Social Class ,White People ,Young Adult ,Adolescents and young adults ,Cancer survival ,Sociodemographic factors ,Insurance status ,Race/ethnicity ,Neighborhood socioeconomic status ,Oncology and Carcinogenesis ,Public Health and Health Services ,Epidemiology ,Oncology and carcinogenesis - Abstract
PurposeTo investigate associations of sociodemographic factors-race/ethnicity, neighborhood socioeconomic status (SES), and health insurance-with survival for adolescents and young adults (AYAs) with invasive cancer.MethodsData on 80,855 AYAs with invasive cancer diagnosed in California 2001-2011 were obtained from the California Cancer Registry. We used multivariable Cox proportional hazards regression to estimate overall survival.ResultsAssociations of public or no insurance with greater risk of death were observed for 11 of 12 AYA cancers examined. Compared to Whites, Blacks experienced greater risk of death, regardless of age or insurance, while greater risk of death among Hispanics and Asians was more apparent for younger AYAs and for those with private/military insurance. More pronounced neighborhood SES disparities in survival were observed among AYAs with private/military insurance, especially among younger AYAs.ConclusionsLacking or having public insurance was consistently associated with shorter survival, while disparities according to race/ethnicity and neighborhood SES were greater among AYAs with private/military insurance. While health insurance coverage associates with survival, remaining racial/ethnic and socioeconomic disparities among AYAs with cancer suggest additional social factors also need consideration in intervention and policy development.
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- 2017
10. Measurement equivalence of the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Medicare survey items between Whites and Asians
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Hays, Ron D, Chawla, Neetu, Kent, Erin E, and Arora, Neeraj K
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Health Services and Systems ,Health Sciences ,Aging ,Clinical Research ,Health Services ,Health and social care services research ,8.1 Organisation and delivery of services ,Adolescent ,Aged ,Asian People ,Ethnicity ,Female ,Health Care Surveys ,Health Personnel ,Humans ,Male ,Medicare ,Quality of Life ,United States ,White People ,Patient evaluations of health care ,Measurement equivalence ,CAHPS ,Asians ,Public Health and Health Services ,Psychology ,Health Policy & Services ,Health sciences ,Human society - Abstract
PurposeAsians report worse experiences with care than Whites. This could be due to true differences in care received, expectations about care, or survey response styles. We examined responses to the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Medicare survey items by Whites and Asians, controlling for underlying level on the CAHPS constructs.MethodsWe conducted multiple group analyses to evaluate measurement equivalence of CAHPS Medicare survey data between White and Asian Medicare beneficiaries for CAHPS reporting composites (communication with personal doctor, access to care, plan customer service) and global ratings of care using pooled data from 2007 to 2011. Responses were obtained from 1,326,410 non-Hispanic Whites and 40,672 non-Hispanic Asians (hereafter referred to as Whites and Asians). The median age for Whites was 70, with 24 % 80 or older, and 70 for Asians, with 23 % 80 or older. Fifty-eight percent of Whites and 56 % of Asians were female.ResultsA model without group-specific estimates fit the data as well as a model that included 12 group-specific estimates (7 factor loadings, 3 measured variable errors, and 2 item intercepts): Comparative Fit Index = 0.947 and 0.948; root-mean-square error of approximation = 0.052 and 0.052, respectively). Differences in latent CAHPS score means between Whites and Hispanics estimated from the two models were similar, differing by 0.053 SD or less.ConclusionsThis study provides support for measurement equivalence of the CAHPS Medicare survey composites (communication, access, customer service) and global ratings between White and Asian respondents, supporting comparisons of care experiences between the two groups.
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- 2017
11. A comparison of adult-child and spousal cancer caregivers' participation in medical decisions.
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Fenton, Anny T. H. R., Ornstein, Katherine A., Kent, Erin E., Miller-Sonet, Ellen, Wright, Alexi A., and Dionne-Odom, J. Nicholas
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ADULT-child caregivers ,CAREGIVERS ,INFORMATION-seeking behavior ,PARTICIPATION ,HELP-seeking behavior ,ADULT children ,MULTIVARIABLE testing - Abstract
Background: Family caregivers often play a key role in medical decision-making for patients with cancer. Adult-children account for nearly half of caregivers, but often have less experience with serious illness care and decision-making and face unique relational challenges as the patient's child. Yet little research explores the potentially distinctive decision-making, involvement in decisions, and support needs of adult-child caregivers. Methods: Analysis of survey data of U.S. cancer caregivers conducted by CancerCare® in 2021. Chi-square tests and multivariable regression models assessed whether adult-child and spousal caregivers differed on the type of medical decisions they participated in (e.g., treatment planning, medication management), who made the decision (e.g., caregiver or joint decision), and the resources that informed decisions (e.g., friends and family, education materials). Results: Adult-children (N = 892) were less likely than spouses (N = 314) to participate in treatment planning (beta = -0.41; 95%CI = -0.81,-0.01), but more likely to be involved in decisions about whether to challenge medical authority (e.g., seeking alternative treatment, second opinion) (beta = 0.50; 95%CI = 0.22,0.78). Compared to spouses, adult-children made joint decisions with patients less often (-13.2-percentage points; 95%CI = -19.64,-6.67) and acted as primary decision-maker more frequently (5.60-percentage points; 95%CI = 0.01,10.43). More adult-children than spouses sought help and information regarding decisions from the oncology team (8.42-percentage points; 95%CI = 1.98,14.87) and friends and family (7.91-percentage points; 95%CI = 1.34,14.48). Conclusions: How cancer caregivers and patients are related to each other shapes caregivers' medical decision-making. Adult-children's and spouses' probabilities of participating in and influencing decisions differed for certain types of decisions while adult-children were more likely to seek information and social support regarding decisions. These findings highlight the importance of the patient's and caregiver's relationship type in medical decision-making, suggesting that decision support programs may be more effective if they tailor programs by relationship type. [ABSTRACT FROM AUTHOR]
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- 2024
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12. Measurement equivalence of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Medicare survey items between non-Hispanic whites and Asians.
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Hays, Ron D, Chawla, Neetu, Kent, Erin E, and Arora, Neeraj K
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Clinical Research ,Aging ,Health Services ,Health and social care services research ,8.1 Organisation and delivery of services ,Clinical Sciences ,Oncology and Carcinogenesis ,Oncology & Carcinogenesis - Abstract
259 Background: Asians report worse experiences with care than Whites. This could be due to true differences in care received, expectations about care, or survey response styles. To examine measurement equivalence of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Medicare survey items between Whites and Asians. Methods: We conducted multiple group confirmatory factor analyses to evaluate measurement equivalence of CAHPS Medicare survey data between White and Asian Medicare beneficiaries for three CAHPS reporting composites (communication with personal doctor, access to care, plan customer service) and global ratings of care using pooled CAHPS data from 2007-2011. Responses were obtained from non-Hispanic whites (n = 1,326,410) and Asians (n = 40,672). The median age for whites was 70, with 24% 80 or older, and 70 for Asians, with 23% 80 or older. Fifty-eight percent of the whites and 56% of the Asians were female. Results: A model without group-specific estimates fit the data as well as a model that included 12 group-specific estimates suggested by Lagrange multiplier tests (Comparative Fit Index = 0.922, Root Mean Square Error of Approximation = 0.064). Three of the 12 group-specific estimates consisted of 7 factor loadings, 3 measured variable errors, and 2 item intercepts. Six of the factor loadings were larger for Asians than for whites. Conclusions: This study provides general support for measurement equivalence in response to the CAHPS Medicare survey composites (communication, access, customer service) and global ratings between White and Asian respondents, supporting comparison of care experiences for the two groups.
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- 2016
13. Annual Out-of-Pocket Expenditures and Financial Hardship Among Cancer Survivors Aged 18–64 Years — United States, 2011–2016
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Ekwueme, Donatus U., Zhao, Jingxuan, Rim, Sun Hee, de Moor, Janet S., Zheng, Zhiyuan, Khushalani, Jaya S., Han, Xuesong, Kent, Erin E., and Yabroff, K. Robin
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- 2019
14. Associations between self-reported pest treatments and pesticide concentrations in carpet dust
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Deziel, Nicole C, Colt, Joanne S, Kent, Erin E, Gunier, Robert B, Reynolds, Peggy, Booth, Benjamin, Metayer, Catherine, and Ward, Mary H
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Epidemiology ,Public Health ,Health Sciences ,Adolescent ,California ,Case-Control Studies ,Child ,Child ,Preschool ,Dust ,Environmental Exposure ,Female ,Floors and Floorcoverings ,Humans ,Infant ,Infant ,Newborn ,Leukemia ,Male ,Pest Control ,Pesticide Residues ,Prevalence ,Risk Assessment ,Self Report ,Childhood leukemia ,Exposure assessment ,Environmental epidemiology ,Pesticides ,Questionnaire validation ,Public Health and Health Services ,Toxicology ,Public health - Abstract
BackgroundRecent meta-analyses demonstrate an association between self-reported residential pesticide use and childhood leukemia risk. Self-reports may suffer from recall bias and provide information only on broad pesticide categories. We compared parental self-reported home and garden pest treatments to pesticides measured in carpet dust.MethodsParents of 277 children with leukemia and 306 controls in Northern and Central California (2001-2007) were asked about insect and weed treatments during the previous year. Carpet dust samples were analyzed for 47 pesticides. We present results for the 7 insecticides (carbaryl, propoxur, chlorpyrifos, diazinon, cyfluthrin, cypermethrin, permethrin), 5 herbicides (2,4-dichlorophenoxyacetic acid [2,4-D], chlorthal, dicamba, mecoprop, simazine), and 1 synergist (piperonyl butoxide) that were present in home and garden products during the study period and were detected in ≥25% of carpet dust samples. We constructed linear regression models for the relative change in pesticide concentrations associated with self-reported treatment of pest types in cases and controls separately and combined, adjusting for demographics, housing characteristics, and nearby agricultural pesticide applications.ResultsSeveral self-reported treatments were associated with pesticide concentrations in dust. For example, households with flea/tick treatments had 2.3 (95% Confidence Interval [CI]: 1.4, 3.7) times higher permethrin concentrations than households not reporting this treatment. Households reporting treatment for ants/cockroaches had 2.5 (95% CI: 1.5, 4.2) times higher cypermethrin levels than households not reporting this treatment. Weed treatment by a household member was associated with 1.9 (1.4, 2.6), 2.2 (1.6, 3.1), and 2.8 (2.1, 3.7) times higher dust concentrations of dicamba, mecoprop, and 2,4-D, respectively. Weed treatments by professional applicators were null/inversely associated with herbicide concentrations in dust. Associations were generally similar between cases and controls and were consistent with pesticide active ingredients in these products during the study time period.ConclusionsConsistency between self-reported pest treatments, concentrations in dust, and pesticides in products lends credibility to the exposure assessment methods and suggests that differential recall by case-control status is minimal.
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- 2015
15. Who Treats Adolescents and Young Adults with Cancer? A Report from the AYA HOPE Study
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Parsons, Helen M, Harlan, Linda C, Schmidt, Susanne, Keegan, Theresa HM, Lynch, Charles F, Kent, Erin E, Wu, Xiao-Cheng, Schwartz, Stephen M, Chu, Roland L, Keel, Gretchen, and Smith, Ashley Wilder
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Health Services and Systems ,Biomedical and Clinical Sciences ,Health Sciences ,Oncology and Carcinogenesis ,Pediatric Research Initiative ,Lymphoma ,Pediatric Cancer ,Cancer ,Pediatric ,Rare Diseases ,Hematology ,Clinical Research ,Adolescent ,Adult ,Cohort Studies ,Female ,Humans ,Male ,National Cancer Institute (U.S.) ,Neoplasms ,Survivors ,United States ,Young Adult ,AYA HOPE Collaborative Group ,AYA HOPE Study ,physicians ,place of care ,treatment ,Nursing ,Public Health and Health Services ,Oncology and carcinogenesis - Abstract
PurposePhysicians play a critical role in delivering effective treatment and enabling successful transition to survivorship among adolescent and young adult (AYA) cancer patients. However, with no AYA cancer medical specialty, information on where and by whom AYAs with cancer are treated is limited.MethodsUsing the National Cancer Institute's population-based AYA HOPE Study, 464 AYAs aged 15-39 at diagnosis treated by 903 physicians were identified. Differences in physician and hospital characteristics were examined by age at diagnosis and cancer type (germ cell cancer, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia [ALL], and sarcoma) using chi-square tests.ResultsTreating physicians were predominately 51-64 years old, male, United States-trained in non-pediatric specialties, and in group practices within large metropolitan areas. Older patients were less often treated by pediatric physicians (p < 0.01) and more likely to be treated by United States-trained physicians without research/teaching responsibilities and in hospitals without residency programs (p < 0.05). The majority of the few pediatricians (n = 44) treated ALL patients. Physicians with research/teaching responsibilities and those based in medical schools were more likely to treat patients with ALL and sarcoma compared with other cancer types (p < 0.01). Of HL patients, 73% were treated at a cancer center compared with 56% of patients with germ cell cancer (p < 0.01), while ALL (85%) and sarcoma (87%) patients were more likely to be treated in hospitals with residency programs (p < 0.01).ConclusionsMost AYAs with cancer were treated by non-pediatric physicians in community settings, although physician characteristics varied significantly by patient cancer type and age at diagnosis.
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- 2015
16. Cancer‐related information needs and cancer's impact on control over life influence health‐related quality of life among adolescents and young adults with cancer
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DeRouen, Mindy C, Smith, Ashley Wilder, Tao, Li, Bellizzi, Keith M, Lynch, Charles F, Parsons, Helen M, Kent, Erin E, Keegan, Theresa HM, and Group, for the AYA HOPE Study Collaborative
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Biomedical and Clinical Sciences ,Psychology ,Cancer ,Clinical Research ,Behavioral and Social Science ,Pediatric ,Management of diseases and conditions ,7.1 Individual care needs ,Good Health and Well Being ,Adolescent ,Adult ,Female ,Health Services Needs and Demand ,Humans ,Internal-External Control ,Male ,Neoplasms ,Patient Education as Topic ,Quality of Life ,Surveys and Questionnaires ,Survivors ,Young Adult ,AYA HOPE Study Collaborative Group ,adolescent and young adult ,cancer survivor ,control ,health-related quality of life ,information need ,oncology ,Clinical Sciences ,Oncology and Carcinogenesis ,Oncology & Carcinogenesis ,Biomedical and clinical sciences - Abstract
ObjectiveAdolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL).MethodsWe examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12).ResultsTwo-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p 0.1).ConclusionsAdolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population.
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- 2015
17. Health‐related quality of life in older adult survivors of selected cancers: Data from the SEER‐MHOS linkage
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Kent, Erin E, Ambs, Anita, Mitchell, Sandra A, Clauser, Steven B, Smith, Ashley Wilder, and Hays, Ron D
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Biomedical and Clinical Sciences ,Health Services and Systems ,Nursing ,Health Sciences ,Oncology and Carcinogenesis ,Clinical Research ,Cancer ,Digestive Diseases ,Aging ,Hematology ,Behavioral and Social Science ,Pancreatic Cancer ,Rare Diseases ,Good Health and Well Being ,Aged ,Female ,Health Status ,Health Surveys ,Humans ,Male ,Mental Health ,Middle Aged ,Neoplasms ,Quality of Life ,SEER Program ,Surveys and Questionnaires ,United States ,epidemiology ,neoplasms ,older adult ,quality of life ,rare diseases ,Public Health and Health Services ,Oncology & Carcinogenesis ,Oncology and carcinogenesis ,Public health - Abstract
BackgroundResearch on health-related quality of life (HRQOL) among older adult cancer survivors is mostly confined to breast cancer, prostate cancer, colorectal cancer, and lung cancer, which account for 63% of all prevalent cancers. Much less is known about HRQOL in the context of less common cancer sites.MethodsHRQOL was examined with the 36-Item Short Form Health Survey, version 1, and the Veterans RAND 12-Item Health Survey in patients with selected cancers (kidney cancer, bladder cancer, pancreatic cancer, upper gastrointestinal cancer, cancer of the oral cavity and pharynx, uterine cancer, cervical cancer, thyroid cancer, melanoma, chronic leukemia, non-Hodgkin lymphoma, and multiple myeloma) and in individuals without cancer on the basis of data linked from the Surveillance, Epidemiology, and End Results cancer registry system and the Medicare Health Outcomes Survey. Scale scores, Physical Component Summary (PCS) and Mental Component Summary (MCS) scores, and a utility metric (Short Form 6D/Veterans RAND 6D), adjusted for sociodemographic characteristics and other chronic conditions, were calculated. A 3-point difference in the scale scores and a 2-point difference in the PCS and MCS scores were considered to be minimally important differences.ResultsData from 16,095 cancer survivors and 1,224,549 individuals without a history of cancer were included. The results indicated noteworthy deficits in physical health status. Mental health was comparable, although scores for the Role-Emotional and Social Functioning scales were worse for patients with most types of cancer versus those without cancer. Survivors of multiple myeloma and pancreatic malignancies reported the lowest scores, with their PCS/MCS scores less than those of individuals without cancer by 3 or more points.ConclusionsHRQOL surveillance efforts revealed poor health outcomes among many older adults and specifically among survivors of multiple myeloma and pancreatic cancer.
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- 2015
18. Racial and Ethnic Disparities in Patient-Provider Communication, Quality-of-Care Ratings, and Patient Activation Among Long-Term Cancer Survivors
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Palmer, Nynikka RA, Kent, Erin E, Forsythe, Laura P, Arora, Neeraj K, Rowland, Julia H, Aziz, Noreen M, Blanch-Hartigan, Danielle, Oakley-Girvan, Ingrid, Hamilton, Ann S, and Weaver, Kathryn E
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Cancer ,Prevention ,Rehabilitation ,Clinical Research ,Adult ,African Americans ,Aged ,Aged ,80 and over ,Asians ,Communication ,Female ,Healthcare Disparities ,Hispanic or Latino ,Humans ,Logistic Models ,Male ,Middle Aged ,Neoplasms ,Patient Participation ,Physician-Patient Relations ,Quality of Health Care ,Survivors ,Whites ,Asian People ,White People ,Black or African American ,Clinical Sciences ,Oncology and Carcinogenesis ,Oncology & Carcinogenesis - Abstract
PurposeWe examined racial and ethnic disparities in patient-provider communication (PPC), perceived care quality, and patient activation among long-term cancer survivors.MethodsIn 2005 to 2006, survivors of breast, prostate, colorectal, ovarian, and endometrial cancers completed a mailed survey on cancer follow-up care. African American, Asian/Pacific Islander (Asian), Hispanic, and non-Hispanic white (white) survivors who had seen a physician for follow-up care in the past 2 years (n = 1,196) composed the analytic sample. We conducted linear and logistic regression analyses to identify racial and ethnic differences in PPC (overall communication and medical test communication), perceived care quality, and patient activation in clinical care (self-efficacy in medical decisions and perceived control). We further examined the potential contribution of PPC to racial and ethnic differences in perceived care quality and patient activation.ResultsCompared with white survivors (mean score, 85.16), Hispanic (mean score, 79.95) and Asian (mean score, 76.55) survivors reported poorer overall communication (P = .04 and P < .001, respectively), and Asian survivors (mean score, 79.97) reported poorer medical test communication (P = .001). Asian survivors were less likely to report high care quality (odds ratio, 0.47; 95% CI, 0.30 to 0.72) and reported lower self-efficacy in medical decisions (mean score, 74.71; P < .001) compared with white survivors (mean score, 84.22). No disparity was found in perceived control. PPC was positively associated with care quality (P < .001) and self-efficacy (P < .001). After adjusting for PPC and other covariates, when compared with whites, Asian disparities remained significant.ConclusionAsian survivors report poorer follow-up care communication and care quality. More research is needed to identify contributing factors beyond PPC, such as cultural influences and medical system factors.
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- 2014
19. Young and uninsured: Insurance patterns of recently diagnosed adolescent and young adult cancer survivors in the AYA HOPE study
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Parsons, Helen M, Schmidt, Susanne, Harlan, Linda C, Kent, Erin E, Lynch, Charles F, Smith, Ashley W, and Keegan, Theresa HM
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Basic Behavioral and Social Science ,Pediatric Cancer ,Cancer ,Behavioral and Social Science ,Health Services ,Clinical Research ,Pediatric ,Good Health and Well Being ,Adult ,Age Factors ,Female ,Humans ,Insurance Coverage ,Male ,Medically Uninsured ,Neoplasms ,Patient Protection and Affordable Care Act ,SEER Program ,Survivors ,United States ,Young Adult ,AYA HOPE Collaborative ,Surveillance ,Epidemiology ,and End Results ,adolescents and young adults ,insurance ,Oncology and Carcinogenesis ,Public Health and Health Services ,Oncology & Carcinogenesis - Abstract
BackgroundYoung adults have historically been the least likely to have health insurance in the United States. Previous studies of survivors of childhood cancer found lower rates of insurance and less access to medical care compared with siblings; however, to the authors' knowledge, no studies to date have examined continuity of insurance after a cancer diagnosis in adolescents and young adults (AYAs).MethodsUsing the AYA Health Outcomes and Patient Experience study, a cohort of 465 individuals aged 15 to 39 years from participating Surveillance, Epidemiology, and End Results registries, we evaluated changes in and sponsors of health insurance coverage after diagnosis, coverage of physician-recommended tests, and factors associated with lack of insurance after a cancer diagnosis using chi-square tests and multivariable logistic regression.ResultsGreater than 25% of AYA survivors of cancer (118 survivors) experienced some period without insurance up to 35 months after diagnosis. Insurance rates were high in the initial year after diagnosis (6 months-14 months; 93.3%) but decreased substantially at follow-up (15 months-35 months; 85.2%). The most common sponsor of health insurance was employer/school coverage (43.7%). Multivariable analysis indicated that older survivors (those aged 25-39 years vs 15-19 years; odds ratio, 3.35 [P 20% of survivors indicated there were physician-recommended tests/treatments that were not covered by insurance, but > 80% received them regardless of coverage.ConclusionsInsurance rates appear to decrease with time since diagnosis in AYA survivors of cancer. Future studies should examine how new policies under the Patient Protection and Affordable Care Act extend access and insurance coverage beyond initial treatment.
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- 2014
20. Attitudes Toward Cancer Clinical Trial Participation in Young Adults with a History of Cancer and a Healthy College Student Sample: A Preliminary Investigation
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Grigsby, Timothy J, Kent, Erin E, Montoya, Michael J, Sender, Leonard S, Morris, Rebecca A, Ziogas, Argyrios, and Anton-Culver, Hoda
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Rare Diseases ,Clinical Trials and Supportive Activities ,Cancer ,Lymphoma ,Clinical Research ,Hematology ,Pediatric Research Initiative ,7.1 Individual care needs ,Management of diseases and conditions ,beliefs ,attitudes ,recruitment ,clinical trials ,Nursing ,Oncology and Carcinogenesis ,Public Health and Health Services - Abstract
Purpose: Adolescents and young adults (AYAs) aged 15-39 at diagnosis have very low cancer clinical trial accrual rates. To date, no studies have examined attitudes toward clinical trial participation in this age range to determine if certain individuals are less likely to enroll if offered participation. The current study assessed attitudes toward participation using the Cancer Treatment Subscale of the Attitudes toward Cancer Trials Scales. Methods: Data were collected from a sample of leukemia and lymphoma survivors (n=99) and a healthy college student sample (n=397). Following a principal components analysis, two subscales-Personal Barriers/Safety and Personal Benefits-were retained for analysis. Results: In the cancer survivor group, only 14 (13.3%) reported being offered participation in a cancer clinical trial, and only 8 of those 14 (7.6% of survivors) participated. Responses from leukemia and lymphoma survivors revealed no significant relationships between age, gender, race/ethnicity, clinical trial participation, insurance status, or social class with Personal Benefits or Personal Barriers/Safety. Healthy college females had more negative Personal Barriers/Safety attitudes compared to males after adjusting for race/ethnicity and social class (p=0.01), but no associations were present when examining Personal Benefits as an outcome. Conclusion: This preliminary investigation suggests that drivers of attitudes toward clinical trial participation in AYAs are not well understood and may impact cancer trial participation. Future work should focus on defining attitudes toward cancer clinical trials in the AYA population and developing interventions to increase awareness, knowledge, and positive attitudes toward participating in cancer research.
- Published
- 2014
21. What Is Most Important to Family Caregivers When Helping Patients Make Treatment-Related Decisions: Findings from a National Survey
- Author
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Bechthold, Avery C., primary, Azuero, Andres, additional, Puga, Frank, additional, Ejem, Deborah B., additional, Kent, Erin E., additional, Ornstein, Katherine A., additional, Ladores, Sigrid L., additional, Wilson, Christina M., additional, Knoepke, Christopher E., additional, Miller-Sonet, Ellen, additional, and Odom, J. Nicholas, additional
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- 2023
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22. Centering patients with advanced cancer includes supporting their caregivers
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Kent, Erin E, primary
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- 2023
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23. Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey
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Dionne‐Odom, James N., primary, Kent, Erin E., additional, Rocque, Gabrielle B., additional, Azuero, Andres, additional, Harrell, Erin R., additional, Gazaway, Shena, additional, Reed, Rhiannon D., additional, Bratches, Reed W., additional, Bechthold, Avery C., additional, Lee, Kyungmi, additional, Puga, Frank, additional, Miller‐Sonet, Ellen, additional, and Ornstein, Katherine A., additional
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- 2023
- Full Text
- View/download PDF
24. Use of Survivorship Care Plans in the United States: Associations With Survivorship Care
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Forsythe, Laura P, Parry, Carla, Alfano, Catherine M, Kent, Erin E, Leach, Corinne R, Haggstrom, David A, Ganz, Patricia A, Aziz, Noreen, and Rowland, Julia H
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Cancer ,7.1 Individual care needs ,Management of diseases and conditions ,Adult ,Aged ,Continuity of Patient Care ,Cross-Sectional Studies ,Female ,Health Care Surveys ,Humans ,Interprofessional Relations ,Logistic Models ,Male ,Medical Oncology ,Middle Aged ,Multivariate Analysis ,National Cancer Institute (U.S.) ,Neoplasms ,Patient Care Planning ,Physicians ,Primary Care ,Practice Patterns ,Physicians' ,Quality of Health Care ,Surveys and Questionnaires ,Survivors ,United States ,Workforce ,Oncology and Carcinogenesis ,Oncology & Carcinogenesis - Abstract
BackgroundSurvivorship care plans (SCPs), including a treatment summary and follow-up plan, intend to promote coordination of posttreatment cancer care; yet, little is known about the provision of these documents by oncologists to primary care physicians (PCPs). This study compared self-reported oncologist provision and PCP receipt of treatment summaries and follow-up plans, characterized oncologists who reported consistent provision of these documents to PCPs, and examined associations between PCP receipt of these documents and survivorship care.MethodsA nationally representative sample of medical oncologists (n = 1130) and PCPs (n = 1020) were surveyed regarding follow-up care for breast and colon cancer survivors. All statistical tests were two-sided. Multivariable regression models identified factors associated with oncologist provision of treatment summaries and SCPs to PCPs (always/almost always vs less frequent).ResultsNearly half of oncologists reported always/almost always providing treatment summaries, whereas 20.2% reported always/almost always providing SCPs (treatment summary + follow-up plan). Approximately one-third of PCPs indicated always/almost always receiving treatment summaries; 13.4% reported always/almost always receiving SCPs. Oncologists who reported training in late- and long-term effects of cancer and use of electronic medical records were more likely to report SCP provision (P < .05). PCP receipt of SCPs was associated with better PCP-reported care coordination, physician-physician communication, and confidence in survivorship care knowledge compared to receipt of neither treatment summaries nor SCPs (P < .05).ConclusionsProviding SCPs to PCPs may enhance survivorship care coordination, physician-physician communication, and PCP confidence. However, considerable progress will be necessary to achieve implementation of sharing SCPs among oncologists and PCPs.
- Published
- 2013
25. Multilevel socioeconomic effects on quality of life in adolescent and young adult survivors of leukemia and lymphoma
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Kent, Erin E, Sender, Leonard S, Morris, Rebecca A, Grigsby, Timothy J, Montoya, Michael J, Ziogas, Argyrios, and Anton-Culver, Hoda
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Rare Diseases ,Clinical Research ,Behavioral and Social Science ,Hematology ,Pediatric Research Initiative ,Lymphoma ,Cancer ,Pediatric ,Basic Behavioral and Social Science ,Good Health and Well Being ,Adolescent ,Adult ,Female ,Health Status Disparities ,Health Status Indicators ,Health Surveys ,Humans ,Leukemia ,Logistic Models ,Male ,Multivariate Analysis ,Quality of Life ,Residence Characteristics ,Social Class ,Socioeconomic Factors ,Survival Analysis ,Survivors ,Young Adult ,Adolescents and young adults ,Quality of life ,Socioeconomic status ,Health disparities ,Cancer survivorship ,Public Health and Health Services ,Psychology ,Health Policy & Services - Abstract
PurposeCancer registry survival analyses have shown that adolescent and young adult patients with low socioeconomic status (SES) have reduced survival compared to those with higher SES. The objective of this study was to determine whether neighborhood- (nSES) and/or individual-level SES (iSES) also predicted current quality of life in adolescent and young adult survivors.MethodsThe Socioeconomics and Quality of Life study surveyed adolescent and young adult survivors of leukemia and lymphoma at least one year post-diagnosis using population-based ascertainment. Factor analysis was used to create a multidimensional age-relevant iSES score and compared with a preexisting census-block-group derived nSES score. Four quality of life domains were assessed: physical health, psychological and emotional well-being, social relationships, and life skills. Nested multivariable linear regression models were run to test the associations between both SES measures and quality of life and to compare the explanatory power of nSES and iSES.ResultsData from 110 individuals aged 16-40 were included in the final analysis. After adjustment for sociodemographic confounders, low nSES was associated only with poorer physical health, whereas low iSES was related to poorer quality of life in all four domains with iSES accounting for an additional 14, 12, 25, and 10 % of the variance, respectively.ConclusionsMeasures of SES at the individual as compared to the neighborhood level may be stronger indicators of outcomes in adolescents and young adults, which has important implications for SES measurement in the context of cancer surveillance.
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- 2013
26. “You’re too young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship
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Kent, Erin E, Parry, Carla, Montoya, Michael J, Sender, Leonard S, Morris, Rebecca A, and Anton-Culver, Hoda
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Clinical Research ,Behavioral and Social Science ,Cancer ,Pediatric Cancer ,Pediatric ,Prevention ,Rehabilitation ,7.1 Individual care needs ,Management of diseases and conditions ,Good Health and Well Being ,Adolescent ,Adult ,Age Factors ,Cost of Illness ,Delayed Diagnosis ,Female ,Focus Groups ,Humans ,Infertility ,Interpersonal Relations ,Interviews as Topic ,Male ,Medication Adherence ,Neoplasms ,Psychology ,Survivors ,Young Adult ,adolescent and young adult ,qualitative research ,focus groups ,cancer survivorship ,Oncology & Carcinogenesis - Abstract
Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.
- Published
- 2012
27. Socioeconomic Impacts on Survival Differ by Race/Ethnicity among Adolescents and Young Adults with Non-Hodgkin's Lymphoma
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Kent, Erin E, Morris, Rebecca A, Largent, Joan A, Ziogas, Argyrios, Sender, Leonard S, and Anton-Culver, Hoda
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Cancer ,Clinical Research ,Lymphoma ,Pediatric ,Rare Diseases ,Hematology ,Good Health and Well Being - Abstract
Shorter survival has been associated with low socioeconomic status (SES) among elderly non-Hodgkin's lymphoma (NHL) patients; however it remains unknown whether the same relationship holds for younger patients. We explored the California Cancer Registry (CCR), to investigate this relationship in adolescent and young adult (AYA) NHL patients diagnosed from 1996 to 2005. A case-only survival analysis was conducted to examine demographic and clinical variables hypothesized to be related to survival. Included in the final analysis were 3,489 incident NHL cases. In the multivariate analyses, all-cause mortality (ACM) was higher in individuals who had later stage at diagnosis (P < .05) or did not receive first-course chemotherapy (P < .05). There was also a significant gradient decrease in survival, with higher ACM at each decreasing quintile of SES (P < .001). Overall results were similar for lymphoma-specific mortality. In the race/ethnicity stratified analyses, only non-Hispanic Whites (NHWs) had a significant SES-ACM trend (P < .001). Reduced overall and lymphoma-specific survival was associated with lower SES in AYAs with NHL, although a significant trend was only observed for NHWs.
- Published
- 2010
28. Leukemia survival in children, adolescents, and young adults: influence of socioeconomic status and other demographic factors
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Kent, Erin E., Sender, Leonard S., Largent, Joan A., and Anton-Culver, Hoda
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Biomedicine ,Hematology ,Epidemiology ,Public Health/Gesundheitswesen ,Oncology ,Biomedicine general ,Cancer Research ,Leukemia ,Survival analysis ,Adolescent and young adult ,Socioeconomic - Abstract
In California, leukemia represents ~35, 5, and 2% of all cancers in children (aged 0–14), adolescents (15–29), and young adults (30–39), respectively. Poorer survival has been previously noted in individuals residing in lower socioeconomic status (SES) neighborhoods. We explored the relationship between SES and survival as modified by age and race/ethnicity using data from the California Cancer Registry.A total of 7,688 incident cases of first primary leukemia diagnosed during 1996–2005 in individuals aged 0–39 at diagnosis were included in this study. Univariate analyses of overall survival were conducted using the Kaplan–Meier method and multivariate survival analyses were performed using Cox proportional hazard regression to estimate hazard ratios.Multivariate analyses showed that overall survival and lymphoid cancer–specific survival was reduced in those individuals aged 15–39 compared to children aged 0–14. Although shorter survival was observed in non-whites, an association between lower-SES neighborhood and shorter survival was significant only for non-Hispanic whites (NHWs) (p value for trend
- Published
- 2009
29. Facing financial barriers to healthcare: patient-informed adaptation of a conceptual framework for adults with a history of cancer
- Author
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Biddell, Caitlin B., primary, Waters, Austin R., additional, Angove, Rebekah S. M., additional, Gallagher, Kathleen D., additional, Rosenstein, Donald L., additional, Spees, Lisa P., additional, Kent, Erin E., additional, Planey, Arrianna Marie, additional, and Wheeler, Stephanie B., additional
- Published
- 2023
- Full Text
- View/download PDF
30. National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report
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Bevans, Margaret, El-Jawahri, Areej, Tierney, D. Kathryn, Wiener, Lori, Wood, William A., Hoodin, Flora, Kent, Erin E., Jacobsen, Paul B., Lee, Stephanie J., Hsieh, Matthew M., Denzen, Ellen M., and Syrjala, Karen L.
- Published
- 2017
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31. Piloting HealthScore : Feasibility and acceptability of a clinically integrated health coaching program for people living with cancer
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Wood, William A., primary, Bailey, Carly, additional, Castrogivanni, Brianna, additional, Mehedint, Diana, additional, Bryant, Ashley Leak, additional, Lavin, Kyle, additional, Tan, Xianming, additional, Richardson, Jaime, additional, Qian, Yiqing, additional, Tan, Kelly R., additional, and Kent, Erin E., additional
- Published
- 2023
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32. Bias reported by family caregivers in support received when assisting patients with cancer‐related decision‐making
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Dionne‐Odom, J. Nicholas, primary, Ornstein, Katherine A., additional, Azuero, Andres, additional, Harrell, Erin R., additional, Gazaway, Shena, additional, Watts, Kristen Allen, additional, Ejem, Deborah, additional, Bechthold, Avery C., additional, Lee, Kyungmi, additional, Puga, Frank, additional, Miller‐Sonet, Ellen, additional, Williams, Grant R., additional, and Kent, Erin E., additional
- Published
- 2022
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33. Short‐term effects of comprehensive caregiver supports on caregiver outcomes
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Miller, Katherine E. M., primary, Van Houtven, Courtney H., additional, Kent, Erin E., additional, Gilleskie, Donna, additional, Holmes, G. Mark, additional, Smith, Valerie A., additional, and Stearns, Sally C., additional
- Published
- 2022
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34. Financial Burden and Mental Health Among LGBTQIA+ Adolescent and Young Adult Cancer Survivors During the COVID-19 Pandemic
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Waters, Austin R., primary, Bybee, Sara, additional, Warner, Echo L., additional, Kaddas, Heydon K., additional, Kent, Erin E., additional, and Kirchhoff, Anne C., additional
- Published
- 2022
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35. Bias reported by family caregivers in support received when assisting patients with cancer‐related decision‐making.
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Dionne‐Odom, J. Nicholas, Ornstein, Katherine A., Azuero, Andres, Harrell, Erin R., Gazaway, Shena, Watts, Kristen Allen, Ejem, Deborah, Bechthold, Avery C., Lee, Kyungmi, Puga, Frank, Miller‐Sonet, Ellen, Williams, Grant R., and Kent, Erin E.
- Subjects
CAREGIVERS ,BURDEN of care ,PATIENT-family relations ,PSYCHOLOGICAL distress ,MINORITIES ,ATTENTIONAL bias ,DECISION making - Abstract
Background: Family caregivers play an increasing role in cancer treatment decision‐making. We examined bias reported by family caregivers in the support they and their patient received from their healthcare team when making these decisions, including associations with distress. Methods: Analysis of 2021 national survey data of family caregivers of patients with cancer (N = 2703). Bias experienced in decision support was assessed with the item: "Have you felt that the support you and the person with cancer have received for making cancer‐related decisions by your doctor or healthcare team has been negatively affected by any of the following?" Check‐all‐that‐apply response options included: age, race, language, education, political affiliation, body weight, insurance type or lack of insurance, income, religion, sexual orientation, and gender/sex. Chi‐square and regression analyses assessed associations between bias and caregiver distress (GAD‐2, PHQ‐2). Results: Of 2703 caregiver respondents, 47.4% (n = 1281) reported experiencing ≥1 bias(es) when receiving decision support for making cancer‐related decisions. Bias was more prevalent among younger caregivers, males, transwomen/men or gender non‐conforming caregivers, racial/ethnic minorities, and those providing care over a longer time period. The odds of having high anxiety (GAD‐2 scores ≥ 3) were 2.1 times higher for caregivers experiencing one type of bias (adjusted OR, 2.1; 95% CI, 1.6–2.8) and 4.2 times higher for caregivers experiencing ≥2 biases (adjusted OR, 4.2; 95% CI, 3.4–5.3) compared to none. Similar results were found for high depression scores (PHQ‐2 scores ≥ 3). Conclusions: Nearly half of caregivers involved in their care recipients' cancer‐related decisions report bias in decision support received from the healthcare team. Experiencing bias was strongly associated with high psychological distress. [ABSTRACT FROM AUTHOR]
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- 2023
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36. Association of Health-Related Quality of Life with Overall Survival in Older Americans with Kidney Cancer: A Population-Based Cohort Study
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Bhandari, Naleen Raj, primary, Kamel, Mohamed H., additional, Kent, Erin E., additional, McAdam-Marx, Carrie, additional, Ounpraseuth, Songthip T., additional, Tilford, J. Mick, additional, and Payakachat, Nalin, additional
- Published
- 2021
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37. Racial and Ethnic Differences in the Financial Consequences of Cancer-Related Employment Disruption
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Biddell, Caitlin B., primary, Wheeler, Stephanie B., additional, Angove, Rebekah S.M., additional, Gallagher, Kathleen D., additional, Anderson, Eric, additional, Kent, Erin E., additional, and Spees, Lisa P., additional
- Published
- 2021
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38. The Family Caregiving Crisis Meets an Actual Pandemic
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Kent, Erin E., Ornstein, Katherine A., and Dionne-Odom, J. Nicholas
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- 2020
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39. Employment Outcomes Among Cancer Survivors in the United States: Implications for Cancer Care Delivery
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de Moor, Janet S, primary, Kent, Erin E, additional, McNeel, Timothy S, additional, Virgo, Katherine S, additional, Swanberg, Jennifer, additional, Tracy, J Kathleen, additional, Banegas, Matthew P, additional, Han, Xuesong, additional, Qin, Jin, additional, and Yabroff, K Robin, additional
- Published
- 2020
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40. Trends in Racial/Ethnic Disparity of Health-Related Quality of Life in Older Adults with and without Cancer (1998–2012)
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Rincon, Maria A., primary, Smith, Ashley Wilder, additional, Yu, Mandi, additional, and Kent, Erin E., additional
- Published
- 2020
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41. Re: Racial Disparities in Cancer Survival Among Randomized Clinical Trials of the Southwest Oncology Group
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Montoya, Michael J. and Kent, Erin E.
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- 2010
42. Web-based investigation of water associated illness in marine bathers
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Turbow, David J., Kent, Erin E., and Jiang, Sunny C.
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- 2008
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43. Employment Outcomes Among Cancer Survivors in the United States: Implications for Cancer Care Delivery.
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Moor, Janet S de, Kent, Erin E, McNeel, Timothy S, Virgo, Katherine S, Swanberg, Jennifer, Tracy, J Kathleen, Banegas, Matthew P, Han, Xuesong, Qin, Jin, Yabroff, K Robin, and de Moor, Janet S
- Subjects
- *
CANCER survivors , *CANCER treatment , *EMPLOYMENT changes , *EMPLOYMENT , *CANCER diagnosis - Abstract
The national prevalence of employment changes after a cancer diagnosis has not been fully documented. Cancer survivors who worked for pay at or since diagnosis (n = 1490) were identified from the 2011, 2016, and 2017 Medical Expenditure Panel Survey and Experiences with Cancer supplement. Analyses characterized employment changes due to cancer and identified correlates of those employment changes. Employment changes were made by 41.3% (95% confidence interval [CI] = 38.0% to 44.6%) of cancer survivors, representing more than 3.5 million adults in the United States. Of these, 75.4% (95% CI = 71.3% to 79.2%) took extended paid time off and 46.1% (95% CI = 41.6% to 50.7%) made other changes, including switching to part-time or to a less demanding job. Cancer survivors who were younger, female, non-White, or multiple races and ethnicities, and younger than age 20 years since last cancer treatment were more likely to make employment changes. Findings highlight the need for patient-provider communication about the effects of cancer and its treatment on employment. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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44. Population-Based Profile of Mental Health and Support Service Need Among Family Caregivers of Adults With Cancer
- Author
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Kent, Erin E., primary and Dionne-Odom, J. Nicholas, additional
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- 2019
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45. Recommendations for Research and Practice to Improve Work Outcomes Among Cancer Survivors
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de Moor, Janet S, primary, Alfano, Catherine M, additional, Kent, Erin E, additional, Norton, Wynne E, additional, Coughlan, Diarmuid, additional, Roberts, Megan C, additional, Grimes, Melvin, additional, and Bradley, Cathy J, additional
- Published
- 2018
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46. Caring for Caregivers and Patients: Research and Clinical Priorities for Informal Cancer Caregiving
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Kent, Erin E., Rowland, Julia H., Northouse, Laurel, Litzelman, Kristin, Chou, Wen-Ying Sylvia, Shelburne, Nonniekaye, Timura, Catherine, O’Mara, Ann, and Huss, Karen
- Subjects
Evidence-Based Medicine ,Caregivers ,Neoplasms ,Psychosocial Support Systems ,Humans ,Social Support ,Survivors ,Article ,United States - Abstract
Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers and their tasks, psychosocial needs, and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and their caregivers, warrant increased attention to the roles and demands of caregiving. This article reviews current evidence presented at a 2-day meeting examining the state of the science of informal cancer caregiving that was convened by the National Cancer Institute and the National Institute of Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This article offers recommendations for moving science forward in 4 areas: 1) improving the estimation of the prevalence and burden of informal cancer caregiving; 2) advancing the development of interventions designed to improve outcomes for cancer patients, caregivers, and patient-caregiver dyads; 3) generating and testing strategies for integrating caregivers into formal health care settings; and 4) promoting the use of technology to support informal cancer caregivers. Cancer 2016;122:1987-95. © 2016 American Cancer Society.
- Published
- 2016
47. Patient experiences of cancer care: scoping review, future directions, and introduction of a new data resource: Surveillance Epidemiology and End Results-Consumer Assessment of Healthcare Providers and Systems (SEER-CAHPS)
- Author
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Mollica, Michelle A, primary, Lines, Lisa M., additional, Halpern, Michael T, additional, Ramirez, Edgardo, additional, Schussler, Nicola, additional, Urato, Matthew, additional, Wilder Smith, Ashley, additional, and Kent, Erin E, additional
- Published
- 2017
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48. Recommendations for Research and Practice to Improve Work Outcomes Among Cancer Survivors.
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Moor, Janet S de, Kent, Erin E, Norton, Wynne E, Coughlan, Diarmuid, Roberts, Megan C, Grimes, Melvin, Alfano, Catherine M, Bradley, Cathy J, and de Moor, Janet S
- Subjects
- *
THEORY of knowledge , *EMPLOYMENT , *CANCER , *PHYSICIANS , *MEDICAL care , *WORK environment - Abstract
Major knowledge gaps limit the development and implementation of interventions to improve employment outcomes among people with cancer. To identify research priorities to improve employment outcomes after cancer, the National Cancer Institute sponsored the meeting "Evidence-Based Approaches for Optimizing Employment Outcomes among Cancer Survivors." This article describes research recommendations stemming from the meeting. At the patient level, longitudinal studies are needed to better understand how patient sociodemographic and clinical characteristics and their experiences at work shape employment outcomes. Interventions that mitigate the impact of cancer and its treatment on employment are critical. At the provider-level, future research is needed to characterize the extent to which physicians and other healthcare providers talk to their patients about employment concerns and how that information is used to inform care. Additionally, there is a need to test models of care delivery that support routine screening of employment concerns, the capture of employment outcomes in electronic health records, and the effective use of this information to improve care. At the employer level, evidence-based training programs are needed to prepare supervisors, managers, human resources staff, and occupational health professionals to address health issues in the workplace; and future interventions are needed to improve patient -employer communication and facilitate workplace accommodations. Importantly, research is needed that reflects the perspectives and priorities of patients and their families, providers and healthcare systems, and employers. Transdisciplinary partnerships and stakeholder engagement are essential to ensure that employment-focused interventions and policies are developed, implemented, and sustained in real-world healthcare delivery and workplace settings. [ABSTRACT FROM AUTHOR]
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- 2018
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49. Association between serious psychological distress and health care use and expenditures by cancer history
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Han, Xuesong, Lin, Chun Chieh, Li, Chunyu, de Moor, Janet S., Rodriguez, Juan L., Kent, Erin E., and Forsythe, Laura P.
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Adult ,Aged, 80 and over ,Male ,Comorbidity ,Health Services ,Middle Aged ,Article ,Neoplasms ,Humans ,Female ,Survivors ,Health Expenditures ,Stress, Psychological ,Aged - Abstract
Serious psychological distress (SPD) is associated with adverse health outcomes such as poor quality of life and shorter survival in cancer survivors, but to the authors' knowledge, the relationship between SPD and health care use and medical expenditures is not clear.A total of 4326 cancer survivors and 57,109 noncancer participants were identified from the 2008 through 2010 Medical Expenditure Panel Survey, a nationwide population-based survey, and their psychological distress was assessed with the 6-item Kessler Psychological Distress Scale (SPD defined by a score ≥13). The association between SPD and use and medical expenditures of various types of health care (office-based, outpatient, hospital inpatient, emergency department, dental, and prescriptions) was examined using a 2-part modeling approach that adjusted for demographic, personal, and comorbidity factors. The marginal effects of SPD on health care use and expenditures were calculated for cancer survivors and were compared with those of noncancer participants.The weighted prevalence of SPD in cancer survivors was 8.2% compared with 4.8% in the noncancer participants. SPD was significantly associated with higher use of all care types except dental care in cancer survivors. Cancer survivors with SPD spent $4431 (95% confidence interval, $3419-$5443) more than survivors without SPD on medical services each year, whereas this extra expenditure associated with SPD for participants without cancer was $2685 (95% confidence interval, $2099-$3271).In a national representative sample of cancer survivors, SPD was found to be associated with higher health care use and medical expenditures. Distress screening and psychosocial care in cancer survivors may help reduce the economic burden of cancer in the United States.
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- 2014
50. Social Support, Self-Efficacy for Decision Making, and Follow-up Care Use in Long-term Cancer Survivors
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Forsythe, Laura P., Alfano, Catherine M., Kent, Erin E., Weaver, Kathryn E., Bellizzi, Keith, Arora, Neeraj, Aziz, Noreen, Keel, Gretchen, and Rowland, Julia H.
- Subjects
Adult ,Male ,Decision Making ,Social Support ,Health Services ,Middle Aged ,Article ,California ,Self Efficacy ,Cross-Sectional Studies ,Socioeconomic Factors ,Patient Satisfaction ,Neoplasms ,Quality of Life ,Humans ,Female ,Survivors ,Follow-Up Studies - Abstract
Cancer survivors play an important role in coordinating their follow-up care and making treatment-related decisions. Little is known about how modifiable factors such as social support are associated with active participation in follow-up care. This study tests associations between social support, cancer-related follow-up care use, and self-efficacy for participation in decision-making related to follow-up care (SEDM). We also identified sociodemographic and clinical factors associated with social support among long-term survivors.The FOllow-up Care Use among Survivors study is a cross-sectional, population-based survey of breast, prostate, colon, and gynecologic cancer survivors (n=1522) 4-14 years post-diagnosis. Multivariable regression models were used to test associations between perceived social support (tangible and emotional/informational support modeled separately), follow-up care use (past 2 years), and SEDM, as well as to identify factors associated with perceived support.Neither support type was associated with follow-up care use (all p0.05), although marital status was uniquely, positively associated with follow-up care use (p0.05). Both tangible support (B for a standard deviation increase (SE)=9.75(3.15), p0.05) and emotional/informational support (B(SE)=12.61(3.05), p0.001) were modestly associated with SEDM. Being married, having adequate financial resources, history of recurrence, and better perceived health status were associated with higher perceived tangible and emotional support (all p0.05).While perceived social support may facilitate survivor efficacy for participation in decision-making during cancer follow-up care, other factors, including marital satisfaction, appear to influence follow-up care use. Marital status and social support may be important factors to consider in survivorship care planning.
- Published
- 2014
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