Creating and Activating an Implementation Community to Drive HPV Vaccine Uptake in Texas: The Role of an NCI-Designated Cancer Center.

The University of Texas MD Anderson Cancer Center, a comprehensive cancer center designated by the National Cancer Institute (NCI), defines its service population area as the State of Texas (29.1 M), the second most populous state in the country and the state with the greatest number of uninsured residents in the United States. Consistent with a novel and formal commitment to prevention as part of its core mission, alongside clear opportunities in Texas to drive vaccine uptake, MD Anderson assembled a transdisciplinary team to develop an institutional Framework to increase adolescent HPV vaccination and reduce HPV-related cancer burden. The Framework was developed and activated through a four-phase approach aligned with the NCI Cancer Center Support Grant Community Outreach and Engagement component. MD Anderson identified collaborators through data-driven outreach and constructed a portfolio of collaborative multi-sector initiatives through review processes designed to assess readiness, impact and sustainability. The result is an implementation community of 78 institutions collaboratively implementing 12 initiatives within a shared measurement framework impacting 18 counties. This paper describes a structured and rigorous process to set up the implementation of a multi-year investment in evidence-based strategies to increase HPV vaccination that solves challenges preventing implementation of recommended strategies and to encourage similar initiative replication.

The Use of Ancillary Services Under a Bundled Care Versus a Fee-For-Service Payment Model.

OBJECTIVES: Colocated services in a team-based integrated practice unit (IPU) optimize care of pelvic floor disorders. Our goal was to compare ancillary service utilization in a multidisciplinary IPU between patients covered by a bundled payment model (BPM) versus a traditional fee-for-service model (FFSM). METHODS: Medical records of women attending an IPU for pelvic floor disorders with colocated services, including nutrition, social work, psychiatry, physical therapy, and subspecialty care between October 2017 and December 2018, were included in this retrospective chart review. All patients were offered treatment with ancillary services according to standardized care pathways. Data extracted included patient demographics, pelvic floor disorder diagnoses, baseline severity measures, payment model, and ancillary services used. Univariate and multivariate logistic regression identified variables predicting higher uptake of ancillary services. RESULTS: A total of 575 women with pelvic floor disorders presented for care during the study period, of which 35.14% attended at least 1 appointment with any ancillary services provider. Ancillary service utilization did not differ between patients in the BPM group and those in the FFSM group (36.22 vs 33.47%; P = 0.489). Social work services were more likely to be used by the BPM compared with the FFSM group (15.95 vs 6.28%; P < 0.001). The diagnosis of fecal incontinence was associated with a higher chance of using any ancillary service (odds ratio, 4.91; 95% confidence interval, 1.81-13.33; P = 0.002). CONCLUSIONS: One third of patients with pelvic floor disorders receiving care in an IPU used colocated ancillary services. Utilization does not differ between payment models.

Creating a bundled care payment model for treatment of pelvic floor disorders: introducing value into urogynecology.

Ineffective healthcare delivery and expenditures associated with the traditional fee for service in-person models have turned attention toward alternative payment models as a means of enhancing healthcare quality in the United States. Bundled care payment models are a form of alternate payment models that provide a single reimbursement for all services rendered for an episode of care and have been developed extensively in primary care settings with limited literature in urogynecology. We describe the process used to create a bundled care payment model for women seeking care in a subspecialty clinic for pelvic floor disorders in partnership with our safety net insurer. The process included estimation of prior average spend, the design of an integrated practice unit, creation of pelvic floor pathways, approximation of utilization rates, and estimation of reimbursement and expenses.

The social and economic toll of cancer survivorship: a complex web of financial sacrifice.

PURPOSE: To assess the financial outcomes and associated social and economic effects on cancer survivors and their families. METHODS: We assessed the responses of 1656 cancer survivors to a survey with both closed- and open-ended questions about cancer-related financial sacrifices they and their family experienced and evaluated differences in financial sacrifice by reported levels of cancer-related debt. RESULTS: The most commonly reported financial sacrifices included cutbacks on household budgets, challenges with health care insurance and costs, career/self-advancement constraints, reduction/depletion of assets, and inability to pay bills. Survivors who incurred $10,000 or more in debt were significantly more likely to report social and economic impacts, including housing concerns and strained relationships. CONCLUSIONS: Our analysis demonstrates both the frequency with which cancer survivors and families must make financial sacrifices as a result of their cancer, and the variety of forms that this sacrifice can take, even for individuals who have health insurance. The many types of financial hardship create challenges that are unique to each survivor and family. IMPLICATIONS FOR CANCER SURVIVORS: Interventions that allow for personalized assistance with the specific financial and social needs of cancer survivors and their families have the potential to address a critical aspect of the long-term wellbeing of this important population.

Cancer Survivors' Reported Discussions with Health Care Providers About Follow-Up Care and Receipt of Written Care Plans.

Prior studies reveal gaps in cancer survivors' discussions with health care providers about follow-up care and receipt of care plans; however, whether survivorship care planning may vary by cancer type is not known. We surveyed 615 survivors of breast, colorectal, prostate, lung cancer, and melanoma enrolled in three health plans to examine cancer survivors' self-reported discussions of follow-up care, including the need for surveillance, late and long-term effects, emotional needs, and health behaviors. We assessed whether cancer survivors received a written treatment summary and post-treatment care instructions. Most (92%) survivors reported having a discussion about the need for surveillance; 75%, late and long-term effects; 69%, lifestyle and health behaviors; and 53%, emotional and social needs. Most (88%) reported receiving post-treatment care instructions and 47%, a treatment summary. While there was little difference among survivors' receipt of surveillance or health behavior recommendations by cancer type (p = 0.85 and p = 0.66, respectively), discussions of late and long-term effects occurred among 82% of prostate, 78% of breast, 73% of melanoma, 72% of colorectal, and 67% of lung survivors (p = 0.06). Approximately half of survivors reported discussions of emotional needs, with modest differences by cancer type (p = 0.08). Our findings indicate that most patient-provider discussions cover information on surveillance, with less emphasis on late and long-term effects, lifestyle and health behaviors, and substantially less focusing on emotional and social needs. No or modest differences in discussions occurred by cancer type. Whether tailoring information to individual cancer survivor needs is beneficial should be examined.

Exploring barriers to the receipt of necessary medical care among cancer survivors under age 65 years.

PURPOSE: With increasing cancer care costs and greater patient cost-sharing in the USA, understanding access to medical care among cancer survivors is imperative. This study aims to identify financial, psychosocial, and cancer-related barriers to the receipt of medical care, tests, or treatments deemed necessary by the doctor or patient for cancer among cancer survivors age < 65 years. METHODS: We used data on 4321 cancer survivors aged 18-64 years who completed the 2012 LIVESTRONG Survey. Multivariable logistic regression was used to identify risk factors associated with the receipt of necessary medical care, including sociodemographic, financial hardship, debt amount, caregiver status, and cancer-related variables. RESULTS: Approximately 28% of cancer survivors were within 1 year, and 43% between 1 and 5 years, since their last treatment at the time of survey. Nearly 9% of cancer survivors reported not receiving necessary medical care. Compared to survivors without financial hardship, the likelihood of not receiving necessary medical care significantly increased as the amount of debt increased among those with financial hardship (RRFinancial hardship w/< $10,000 debt = 1.94, 95% CI 1.55-2.42, and RR RRFinancial hardship w/≥ $10,000 debt = 3.41, 95% CI 2.69-4.33, p < 0.001). Survivors who reported lack of a caregiver, being uninsured, and not receiving help understanding medical bills were significantly more likely to not receive necessary medical care. CONCLUSION: We identified key financial and insurance risk factors that may serve as significant barriers to the receipt of necessary medical care among cancer survivors age < 65 in the USA IMPLICATIONS FOR CANCER SURVIVORS: The majority of cancer survivors reported receiving medical care either they or their doctors deemed necessary. However, identifying potentially modifiable barriers to receipt of necessary medical cancer care among cancer survivors age < 65 is imperative for developing interventions to ensure equitable access to care and reducing cancer disparities.

Association of worry about cancer to benefit finding and functioning in long-term cancer survivors.

PURPOSE: Worry about cancer recurrence or progression is associated with negative effects of cancer, such as worse physical functioning, but associations with positive changes post-cancer, such as benefit finding, are unknown. We measured the proportion of patients reporting frequent worry about cancer recurrence or progression and examined the association between worry about cancer recurrence or progression to benefit finding and functioning in cancer. METHODS: We surveyed 594 long-term (5-10 years post-diagnosis) survivors of cancer (breast, prostate, colorectal, lung, melanoma) in this cross-sectional study. The survey asked about worry about cancer recurrence/progression, negative effects of cancer on mental and physical function, and benefit finding as a result of the cancer (positive effects). Multivariate regressions estimated associations of worry about cancer with negative and positive effects of cancer. RESULTS: Worrying about cancer often or all the time was reported by 19.6% of survivors. Worry about cancer was related to worse functioning (odds ratio (OR) range 1.40 to 1.46, all p's < .01). Worry about recurrence/progression was unrelated to benefit finding (all p's > .10). CONCLUSIONS: Worry about cancer was associated with negative, but not positive, effects of cancer. Treating worry about cancer is unlikely to reduce benefit finding after cancer. Given the high prevalence of worry about cancer and relationship to negative effects of cancer, clinical care should attempt to address this worry for long-term survivors.

Cancer survivors' experiences with insurance, finances, and employment: results from a multisite study.

BACKGROUND: Cancer has significant implications on survivors' insurance coverage, financial status, and employment. We aimed to examine how these outcomes vary for survivors of different cancer types. METHODS: Using the Cancer Survivorship Supplement of the Medical Expenditures Panel Survey (MEPS), in 2013, we surveyed survivors of five common cancers who were diagnosed during 2003-2008 and were continuously enrolled in one of three health plans in Massachusetts, Colorado, and Washington State. RESULTS: Among 615 eligible respondents, 96 % reported having health insurance at the time of or since diagnosis; of those, few reported barriers in coverage to visit doctors or facilities of their choice. Approximately 15 % reported experiencing financial hardships due to cancer. Of the 334 who responded as having been employed at the time of or since diagnosis, approximately 25 % reported that they or their spouses remained at their jobs due to concerns about losing medical insurance. Further, 63 % reported making changes in their jobs or careers (e.g., took extended time off, worked part time, or declined promotion) due to cancer, and 42 % reported that cancer interfered with their physical and/or mental tasks at work or reduced productivity. Negative employment and financial implications were most common among those with lung, breast, and colorectal cancer, and those diagnosed before age 65. CONCLUSIONS: In this insured population, few experienced restrictions in cancer care coverage, though maintaining health insurance often drove employment decisions. Significant negative effects on finances and employment were observed among specific cancer types and younger survivors. IMPLICATIONS FOR CANCER SURVIVORS: Our study findings emphasize a need to identify ways of supporting survivors and provide tailored resources to reduce the untoward financial and work-related implications of cancer.

For Working-Age Cancer Survivors, Medical Debt And Bankruptcy Create Financial Hardships.

The rising medical costs associated with cancer have led to considerable financial hardship for patients and their families in the United States. Using data from the LIVESTRONG 2012 survey of 4,719 cancer survivors ages 18-64, we examined the proportions of survivors who reported going into debt or filing for bankruptcy as a result of cancer, as well as the amount of debt incurred. Approximately one-third of the survivors had gone into debt, and 3 percent had filed for bankruptcy. Of those who had gone into debt, 55 percent incurred obligations of $10,000 or more. Cancer survivors who were younger, had lower incomes, and had public health insurance were more likely to go into debt or file for bankruptcy, compared to those who were older, had higher incomes, and had private insurance, respectively. Future longitudinal population-based studies are needed to improve understanding of financial hardship among US working-age cancer survivors throughout the cancer care trajectory and, ultimately, to help stakeholders develop evidence-based interventions and policies to reduce the financial hardship of cancer.

Existential challenges experienced by lymphoma survivors: Results from the 2010 LIVESTRONG Survey.

We sought to examine the existential challenges that cancer survivors may experience as they strive to make meaning, regain their self-identity, cope with fear of recurrence, and experience feelings of grief and guilt. Lymphoma survivors (n = 429) completed the 2010 LIVE STRONG: survey and provided responses about meaning, cancer worry, security, identity, grief, guilt, and perceived functional impairment due to these concerns. Most survivors (73%-86%) endorsed existential concerns, with 30-39 percent reporting related perceived functional impairment. Concerns were associated with being female, younger, unmarried, and having undergone stem cell transplantation. Lymphoma survivors experience existential challenges that impact their life even years after diagnosis.

Psychometric investigation of benefit finding among long-term cancer survivors using the Medical Expenditure Panel Survey.

PURPOSE: Benefit finding has been shown to be beneficial for people with cancer and may be an indication that one is coping adequately with the stress of cancer. This study evaluated the psychometric properties of a four-item benefit finding measure from the cancer survivorship supplement of the Medical Expenditure Panel Survey (MEPS). METHODS: Long-term survivors (5-10 years post-diagnosis) of breast, prostate, colorectal or lung cancer or melanoma (n = 594) completed the MEPS cancer supplement survey in 2013. Four items asked about benefit finding after the cancer: stronger person, coping better, positive changes and having healthier habits. Information on sociodemographics, disease and activity limitations after the cancer was also collected. We examined factor structure, reliability (Kuder-Richardson 20) and validity. RESULTS: The four benefit finding items did not appear to measure one factor. Three of the benefit finding items (stronger person, coping better, positive changes) were related to gender, receipt of chemotherapy and activity limitations but not cancer stage, time since diagnosis or income. Having healthier habits was unrelated to any sociodemographic or disease variable. CONCLUSIONS: Three of the items (stronger person, coping better, positive changes) appeared to have validity as they were related to variables that literature has shown are related to benefit finding. However, having healthier habits is likely measuring a separate but related construct. This short instrument may be used in future studies assessing benefit finding post cancer; however, the four items should be analyzed separately.

Prevalence of perceived cognitive dysfunction in survivors of a wide range of cancers: results from the 2010 LIVESTRONG survey.

PURPOSE: With cancer survivors now numbering over 13 million in the United States, and expected to continue to increase, it is important to consider the needs of this growing population. In the literature, one of the most common complaints by cancer survivors is perceived cognitive dysfunction. Since the preponderance of the research has focused on breast cancer survivors, the purpose of the present study was to explore the prevalence and correlates of perceived cognitive dysfunction in a large sample of cancer survivors with representation across a wide range of different types of cancer. METHODS: A sample of 3108 post-treatment cancer survivors completed the 2010 LIVESTRONG survey as part of a larger study of cancer survivorship. Respondents completed standardized questions regarding current and past perceived cognitive dysfunction, as well as depressive symptoms, and demographic and medical variables. RESULTS: Current perceived cognitive dysfunction was reported by nearly half of respondents (45.7%), across a wide range of cancer types, with the highest prevalence among survivors of central nervous system cancers. Receiving chemotherapy and current report of depressive symptoms were both strongly associated with current perceived cognitive dysfunction. CONCLUSION: These findings contribute to a growing appreciation of the high prevalence of perceived cognitive dysfunction in survivors of a wide range of cancer types and the potential interactive effect of concurrent symptoms of depression. These findings highlight a need to develop more effective means of preventing or reducing cognitive dysfunction in cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Perceived cognitive dysfunction was reported in a wide range of cancer survivors. The potential interactive effect of symptoms of depression suggests the need to develop interventions targeting both cognitive dysfunction and depression to achieve improvements in cognitive functioning.

Cancer Survivors' Use of Fertility Preservation.

BACKGROUND: Some cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors' use of and costs for fertility preservation (FP) over time. METHODS: The study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses. RESULTS: One hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. The majority of men using FP used sperm banking (99%), whereas women used egg preservation (40%), embryo preservation (40%), and other methods (37%). On average, women paid more for FP than men (p < 0.001); however, costs for women significantly declined over time (p = 0.021). CONCLUSIONS: The study points to other areas for research in women's health, including the development of educational interventions with patients and providers to reduce gender disparities in FP and ensure timely patient-provider discussions related to fertility issues.

Correlates of positive health behaviors in cancer survivors: results from the 2010 LIVESTRONG survey.

Positive health-promoting behaviors, including lifestyle factors (e.g., physical activity) and appropriate health service utilization (e.g., screening for secondary cancers), can minimize the health risks and challenges facing cancer survivors. The goal of this article is to examine factors associated with positive health behaviors in 2,615 posttreatment cancer survivors who completed the 2010 LIVESTRONG survey. Multivariate logistic regression was used to model odds of reporting each of six positive health behaviors "as a result of your experience with cancer": three "healthy lifestyle" behaviors and three "health care utilization" behaviors. In fully adjusted models, factors associated with greater likelihood of engaging in positive lifestyle behaviors (e.g., physical activity, changing diet) included sociodemographic factors, greater knowledge about how to reduce cancer risk; and reporting more psychological benefits due to cancer (ps <.01). Factors associated with greater likelihood of attending medical appointments and obtaining recommended cancer screenings included older age, better patient-provider communication, greater knowledge about how to reduce cancer risk, and more psychological benefits of cancer (ps <.01). Results suggest that knowledge about how to prevent cancer and benefit finding after cancer are related to positive health behaviors broadly, whereas better patient-provider communication is associated with positive cancer screening and health care utilization but not healthy lifestyle behaviors. Clinical interventions targeting these modifiable factors could maximize positive health behavior changes among cancer survivors, affecting risk for cancer recurrence as well as overall health and well-being.

Estimating the health and economic burden of cancer among those diagnosed as adolescents and young adults.

Adolescent and young adult cancer survivors-those who were ages 15-39 at their first cancer diagnosis-have important health limitations. These survivors are at risk for higher health care expenditures and lost productivity, compared to adults without a history of cancer. Using Medical Expenditure Panel Survey data, we present nationally representative estimates of the economic burden among people who were diagnosed with cancer in adolescence or young adulthood. Our findings demonstrate that surviving cancer at this age is associated with a substantial economic burden. Compared to adults without a history of cancer, adolescent and young adult cancer survivors had excess annual medical expenditures of $3,170 per person and excess annual productivity losses of $2,250 per person. Multifaceted prevention strategies, including education and sustained intervention programs to ensure access to lifelong risk-based follow-up care, may be effective ways to improve the economic outcomes associated with cancer survivorship in this population.

Potential benefits of treatment summaries for survivors' health and information needs: results from a LIVESTRONG survey.

PURPOSE: Treatment summaries (TSs), a critical component of survivorship care plans, have been identified as a tool to improve outcomes for the 14 million cancer survivors in the United States. METHODS: In 2010, the LIVESTRONG Foundation fielded the LIVESTRONG Survey for People Affected by Cancer. The survey was designed to assess the physical, emotional, and practical concerns after cancer as well as receipt of treatment summaries. Participants were recruited online and through national partners. RESULTS: Over a 9-month period, > 12,000 people completed the survey, including 3,682 post-treatment cancer survivors (PTCSs). PTCSs who received a TS reported that they were closer to time since diagnosis or end of treatment (P < .01), more likely to have received chemotherapy (P < .01), more likely to have received the majority of their health care from a medical oncologist (P < .05), experiencing significantly fewer post-treatment emotional concerns (P < .05), and significantly less likely to say that they had learned to live with their concerns (P < .05). PTCSs who received a TS more often reported that their needs had been met, including receiving information about possible late effects, care they received during treatment, and care they received after treatment. CONCLUSIONS: Receipt of a TS was associated with a variety of positive outcomes; however, only approximately one third of PTCSs received one. Future studies focused on patient perspectives on care planning tools can help to improve optimal survivorship care delivery. Possible solutions for improving access to a TS are included.

Population-level trends in posttreatment cancer survivors' concerns and associated receipt of care: results from the 2006 and 2010 LIVESTRONG surveys.

UNLABELLED: There is a need to better understand the posttreatment concerns of the nearly 14 million survivors of cancer alive in the United States today and their receipt of care. Using data from 2,910 posttreatment survivors of cancer from the 2006 or 2010 LIVESTRONG Surveys, the authors examined physical, emotional, and practical concerns, receipt of care, and trends in these outcomes at the population level. RESULTS: 89% of respondents reported at least one physical concern (67% received associated posttreatment care), 90% reported at least one emotional concern (47% received care), and 45% reported at least one practical concern (36% received care). Female survivors, younger survivors, those who received more intensive treatment, and survivors without health insurance often reported a higher burden of posttreatment concerns though were less likely to have received posttreatment care. These results reinforce the importance of posttreatment survivorship and underscore the need for continued progress in meeting the needs of this population. Efforts to increase the availability of survivorship care are extremely important to improve the chances of people affected by cancer living as well as possible in the posttreatment period.

Using new media to reach Hispanic/Latino cancer survivors.

In the USA, cancer is a leading cause of morbidity and premature death among the Hispanic/Latino population. It is estimated that one in two Hispanic men and one in three Hispanic women will be diagnosed with cancer during their lifetime (American Cancer Society 2010). Despite this significant cancer burden, few innovative strategies for communication and outreach to this population currently exist. In 2009, LIVESTRONG launched a national outreach campaign, which utilized social marketing, specifically targeting Hispanics with the goal of increasing awareness and usage of LIVESTRONG's Spanish-language cancer navigation resources. This campaign, one of the first undertaken by a national cancer-related organization, led to increased awareness and utilization of resources, including a 238% increase in traffic over traditional marketing campaigns which focused on radio alone. The success of this campaign highlights the use of social media as a cost-effective method to raise awareness of cancer resources among Hispanics.

What Do People Affected by Cancer Think About Electronic Health Information Exchange? Results From the 2010 LIVESTRONG Electronic Health Information Exchange Survey and the 2008 Health Information National Trends Survey.

PURPOSE: The Health Information Technology for Economic and Clinical Health (HITECH) Act has placed an emphasis on electronic health information exchange (EHIE). Research on needs of patient, especially those touched by cancer, has been sparse. Here, we present data on preferences for EHIE among those touched by cancer compared with a nationally representative sample of American adults. METHODS: TWO SURVEYS WERE USED: an online survey designed by LIVESTRONG (the Lance Armstrong Foundation) and a dual-frame, nationally representative sample of adults collected through the National Cancer Institute's Health Information National Trends Survey (HINTS). RESULTS: The LIVESTRONG EHIE survey yielded a sample of 8,411 respondents, including 433 currently receiving cancer treatment, 298 living with cancer as a chronic disease, 2,343 post-treatment survivors, and 5,337 with no history of cancer. The HINTS sample consisted of 7,674 respondents representative of the general adult population. Comparisons revealed a strong positive view of the value of EHIE within the cancer-relevant groups, especially among those living with cancer as a chronic disease. Only about half of the general population showed a similar degree of enthusiasm for EHIE. When asked about specific functions for EHRs, respondents valued privacy and security above all, followed by improving care coordination and data sharing between providers. CONCLUSION: These data suggest that the EHIE needs among those touched by cancer may be greater than in the general population. This is particularly important because people affected by cancer are among those who access our health care system most frequently and who have the most at stake.