Mary S. McCabe

15 Background: YA survivors face challenges unique from those of survivors of childhood cancer or of older adults. The potential impact of cancer or its treatment upon employment and finances for YA survivors is unknown. Methods: Eligibility included diagnosis of malignancy between ages 18-39, 1-5 years from diagnosis and > 1 year from therapy completion. Participants (see Table) were randomly selected from tumor registries of 7 academic institutions; 875 (41% of attempted contacts) enrolled and completed online patient reported outcomes survey related to the effects of cancer/treatment on employment, finances, and cancer-related distress. Results: Overall 84% were employed sometime between cancer diagnosis and study enrollment. Of those, 76% took paid time off (40% < 2 mo, 29% 2-5 mo, 31% > 6 mo). Unpaid time off was required by 39% (37% < 2 mo, 25% 2-5 mo, 38% > 6 mo). Other impairments included inability to carry out physical (59%) or mental (55%) tasks required for their job, being less productive (67%), and not pursuing an advancement/promotion (21%). Financial impacts were substantial: 61% worried about medical bills, 31% went into debt related to their cancer/treatment. Of those incurring debt, most (53%) reported this amount to be < $10,000, 29% $10,000-$24,999, and 18% > $25,000; 13 (4.8%) filed for bankruptcy. Chi squares comparing those receiving extensive treatment vs. surgery only indicated greater likelihood of financial debt (10.6, P=.001) and residual distress (13.9, P < .001) if treated with more than surgery. Conclusions: Most YA survivors experience a significant negative impact on employment and finances related to their cancer and treatment, which occurs at a critical time in their careers and at a life phase inherently more financially unstable. Longitudinal follow-up is required to better quantify the long-term burden on work and finances from cancer diagnosed in young adulthood. [Table: see text]

Formal cancer survivorship care is a growing focus internationally. This article provides a broad overview of the national strategies currently in progress for the development of survivorship programs and care plans within the United States and across Europe. The different approaches taken in their implementation, staffing, and clinical focus are highlighted, with an emphasis on how they are incorporated into various models of care. The considerable variation in making survivorship a formal period of care across countries and health care systems is discussed, including the factors influencing these differences. A review of research focused on the evaluation of definitions and outcomes is provided along with a discussion of important areas requiring future research. Cancer 2013;119(11 suppl):2179‐86. © 2013 American Cancer Society.

The LIVESTRONG Centers of Excellence were funded to increase the effectiveness of survivorship care in oncology practice. This study describes the ongoing process of adopting and implementing survivorship care using the framework of the diffusion of innovation theory of change. Primary data collection included telephone interviews with 39 members from the eight centers and site visits. Organizational characteristics, overall progress, and challenges for implementation were collected from proposals and annual reports. Creating an awareness of cancer survivorship care was a major accomplishment (relative advantage). Adoption depended on the fit within the cancer center (compatibility), and changed over time based on trial and error (trialability). Implementing survivorship care within the existing culture of oncology and breaking down resistance to change was a lengthy process (complexity). Survivorship care became sustainable as it became reimbursed, and more new patients were seen (observability). Innovators and early adopters were crucial to success. Diffusion of innovation theory can provide a strategy to evaluate adoption and implementation of cancer survivorship programs into clinical practice.

Introduction This study evaluates the concordance of treatment summaries (TSs) and survivorship care plans (SCPs) delivered to breast cancer survivors within the LIVESTRONG™ Network of Survivorship Centers of Excellence with Institute of Medicine (IOM) recommendations and describes additional structure/process variables. Method Seven NCI-designated comprehensive cancer centers and six community-based centers participated. TS/SCPs for 65 patients were rated against IOM recommendations using a study-derived checklist, and surveys were administered to better understand the structure and process of delivering TSs/SCPs. Results On average, fewer than half of IOM content recommendations were met for TSs (M = 46%) and less than two thirds for SCPs (M = 59%). No sites achieved ≥75% overall concordance with IOM recommendations for TSs and only two of 13 met this criterion for SCPs. Content domain scores across sites varied widely, as did the number of sites addressing domain content with ≥75% concordance. Nonetheless, resources required for document preparation and delivery were substantial. Discussion Gaps in concordance with IOM recommendations exist even in dedicated survivorship centers. A substantial time burden was also noted. Further research is needed to determine which informational elements are essential, to develop and test strategies for improving efficiency and reach, and to determine if outcomes of survivorship care planning warrant the resources required in their preparation and delivery. Implications for survivors TSs and SCPs have been recommended for all cancer survivors. Essential elements must be determined, approaches made more efficient, outcome improvements demonstrated, and cost-benefit analyses determined before survivors should expect widespread implementation of this recommendation for survivorship care.

Patient autonomy has extended beyond providing sufficient, understandable information before obtaining consent for treatment to the practice of telling patients the truth about their diagnoses and prognoses.