Erin E. Kent

Cancer Survivors: A Booming Population

Background: In this first article of what is planned to be an annual series, we examine the history of cancer prevalence reporting and the role that these annual figures play in guiding the direction of cancer control research, and specifically the science of cancer survivorship. For this inaugural year, we focus on the confluence of the growing number of survivors and population aging, and the impact these combined trends will have on cancer survivorship in the future. Methods: State or metro area-level cancer incidence and prevalence data were collected from 9 registries via the Surveillance, Epidemiology, and End Results Program. The complete prevalence method was used to estimate prevalence for 2008 and the Prevalence, Incidence Approach Model method was used to project prevalence data through 2020, assuming flat cancer incidence and survival trends but dynamic U.S. population projections. Results: As of January 2008, the number of cancer survivors is estimated at 11.9 million. Approximately 60% of cancer survivors are age 65 or older, and by the year 2020, it is estimated that 63% of cancer survivors will be age 65 or older. Conclusions: Improved survival and population aging converge to generate a booming population of older adult cancer survivors, many of whom have multiple complex health conditions and unique survivorship needs. This demographic shift has important implications for future health care needs and costs of the U.S. population. Impact: The findings provide information critical for guiding cancer prevention and control research and service provision. Cancer Epidemiol Biomarkers Prev; 20(10); 1996–2005. ©2011 AACR.

Are survivors who report cancer‐related financial problems more likely to forgo or delay medical care?

Financial problems caused by cancer and its treatment can substantially affect survivors and their families and create barriers to seeking health care.

Health information needs and health-related quality of life in a diverse population of long-term cancer survivors

OBJECTIVE To investigate health information needs and their association with health-related quality of life (HRQOL) in a diverse, population-based sample of long-term cancer survivors. METHODS We analyzed health information needs from 1197 cancer survivors 4-14 years post-diagnosis drawn from two cancer registries in California. Multivariable regression models were used to identify factors associated with endorsement of total number and different categories of needs. The relationship between number of needs and HRQOL and effect modification by confidence for obtaining information was examined. RESULTS Survivors reported a high prevalence of unmet information needs in the following categories: side effects & symptoms: 75.8%; tests & treatment: 71.5%; health promotion: 64.5%; interpersonal & emotional: 60.2%; insurance: 39.0%; and sexual functioning & fertility: 34.6%. Survivors who were younger, non-White, and did not receive but wanted a written treatment summary reported a higher number of needs. Number of information needs was inversely related to mental well-being, particularly for those with low confidence for obtaining information (P<0.05). CONCLUSION These patterns suggest disparities in access to important health information in long-term survivors and that affect HRQOL. PRACTICE IMPLICATIONS Findings suggest a need for tailored interventions to equip survivors with comprehensive health information and to bolster skills for obtaining information.

Can't see the forest for the care plan: a call to revisit the context of care planning.

In its 2006 report “From Cancer Patient to Cancer Survivor: Lost in Transition,”1 the Institute of Medicine (IOM) provided suggestions for improving transitional and follow-up care for the growing population of cancer survivors. The IOM recommended that all patients completing primary treatment for cancer be provided with a comprehensive treatment summary and follow-up care plan, together referred to as a survivorship care plan (SCP).1,2 The IOM recommended that the SCP be reviewed with the patient during an end-of-treatment consultation, in the hope that use of an SCP and consultation would foster improved care coordination and communication.1 The IOM panel acknowledged the lack of an evidence base for survivorship care planning but concluded that “some elements of care simply make sense—that is, they have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the contrary.”1p5 However, the IOM report went on to call for health services research to assess the impact, cost, and acceptability of SCPs with regard to patients and providers.1

Financial Hardship Associated With Cancer in the United States: Findings From a Population-Based Sample of Adult Cancer Survivors

PURPOSE To estimate the prevalence of financial hardship associated with cancer in the United States and identify characteristics of cancer survivors associated with financial hardship. METHODS We identified 1,202 adult cancer survivors diagnosed or treated at ≥ 18 years of age from the 2011 Medical Expenditure Panel Survey Experiences With Cancer questionnaire. Material financial hardship was measured by ever (1) borrowing money or going into debt, (2) filing for bankruptcy, (3) being unable to cover ones share of medical care costs, or (4) making other financial sacrifices because of cancer, its treatment, and lasting effects of treatment. Psychological financial hardship was measured as ever worrying about paying large medical bills. We examined factors associated with any material or psychological financial hardship using separate multivariable logistic regression models stratified by age group (18 to 64 and ≥ 65 years). RESULTS Material financial hardship was more common in cancer survivors age 18 to 64 years than in those ≥ 65 years of age (28.4% v 13.8%; P < .001), as was psychological financial hardship (31.9% v 14.7%, P < .001). In adjusted analyses, cancer survivors age 18 to 64 years who were younger, female, nonwhite, and treated more recently and who had changed employment because of cancer were significantly more likely to report any material financial hardship. Cancer survivors who were uninsured, had lower family income, and were treated more recently were more likely to report psychological financial hardship. Among cancer survivors ≥ 65 years of age, those who were younger were more likely to report any financial hardship. CONCLUSION Cancer survivors, especially the working-age population, commonly experience material and psychological financial hardship.

Cancer survivorship research in Europe and the United States: where have we been, where are we going, and what can we learn from each other?

The growing number of cancer survivors worldwide has led to of the emergence of diverse survivorship movements in the United States and Europe. Understanding the evolution of cancer survivorship within the context of different political and health care systems is important for identifying the future steps that need to be taken and collaborations needed to promote research among and enhance the care of those living after cancer. The authors first review the history of survivorship internationally and important related events in both the United States and Europe. Lessons learned from survivorship research are then broadly discussed, followed by examination of the infrastructure needed to sustain and advance this work, including platforms for research, assessment tools, and vehicles for the dissemination of findings. Future perspectives concern the identification of collaborative opportunities for investigators in Europe and the United States to accelerate the pace of survivorship science going forward. Cancer 2013;119(11 suppl):2094‐108.

Use of Survivorship Care Plans in the United States: Associations With Survivorship Care

BACKGROUND Survivorship 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. METHODS A 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). RESULTS Nearly 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). CONCLUSIONS Providing 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.

Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study.

Introduction: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL). Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15–39, diagnosed with cancer 6–14 months prior, in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables. Results: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p’s < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains. Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.

Social well-being among adolescents and young adults with cancer: A systematic review.

A cancer diagnosis during adolescence or young adulthood may negatively influence social well‐being. The existing literature concerning the social well‐being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research.

Social well-being among adolescents and young adults with cancer

A cancer diagnosis during adolescence or young adulthood may negatively influence social well‐being. The existing literature concerning the social well‐being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research.