Are we ready to predict late effects? A systematic review of clinically useful prediction models.

BACKGROUND: After completing treatment for cancer, survivors may experience late effects: consequences of treatment that persist or arise after a latent period. PURPOSE: To identify and describe all models that predict the risk of late effects and could be used in clinical practice. DATA SOURCES: We searched Medline through April 2014. STUDY SELECTION: Studies describing models that (1) predicted the absolute risk of a late effect present at least 1 year post-treatment, and (2) could be used in a clinical setting. DATA EXTRACTION: Three authors independently extracted data pertaining to patient characteristics, late effects, the prediction model and model evaluation. DATA SYNTHESIS: Across 14 studies identified for review, nine late effects were predicted: erectile dysfunction and urinary incontinence after prostate cancer; arm lymphoedema, psychological morbidity, cardiomyopathy or heart failure and cardiac event after breast cancer; swallowing dysfunction after head and neck cancer; breast cancer after Hodgkin lymphoma and thyroid cancer after childhood cancer. Of these, four late effects are persistent effects of treatment and five appear after a latent period. Two studies were externally validated. Six studies were designed to inform decisions about treatment rather than survivorship care. Nomograms were the most common clinical output. CONCLUSION: Despite the call among survivorship experts for risk stratification, few published models are useful for risk-stratifying prevention, early detection or management of late effects. Few models address serious, modifiable late effects, limiting their utility. Cancer survivors would benefit from models focused on long-term, modifiable and serious late effects to inform the management of survivorship care.

Colorectal cancer survivors' needs and preferences for survivorship information.

PURPOSE: Before developing a survivorship care plan (SCP) that colorectal cancer (CRC) survivors will value, understanding the informational needs of CRC survivors is critical. METHODS: We surveyed survivors treated for nonmetastatic CRC at two hospitals in New York about their needs and preferences for survivorship information. Participants completed treatment 6 to 24 months before the interview and had not received an SCP. We evaluated whether survivors knew their treatment history (10 topics), whether they understood ongoing risks (four topics), and their preferences for receiving 16 topics of survivorship information. RESULTS: One hundred seventy-five survivors completed the survey. Most survivors remembered information about past treatment (98% to 99% for each treatment). Fewer survivors knew their risks of local recurrence, distant recurrence, or developing a new CRC (69%, 77%, and 40%, respectively). Most participants reported receiving information about their cancer history and ongoing oncology visits (77% to 86% across topics). Across all topics, 93% to 99% of those who reported receiving information found the information useful. A minority of survivors reported they received information about symptoms to report to doctors, returning to work, or financial or legal issues (5% to 48% across topics), but those who did found the information useful (89% to 100% across topics). CONCLUSIONS: In the absence of an SCP, CRC survivors still generally understood their cancer history. However, many lacked knowledge of ongoing risks and prevention. Most survivors stated that they found the survivorship information they received useful. SCPs for CRC survivors should focus less on past care and more on helping survivors understand their risks and plan for the future.

Survivorship care plans: is there buy-in from community oncology providers?

BACKGROUND: The Institute of Medicine recommended that survivors of cancer and their primary care providers receive survivorship care plans (SCPs) to summarize cancer treatment and plan ongoing care. However, the use of SCPs remains limited. METHODS: Oncology providers at 14 National Cancer Institute Community Cancer Centers Program hospitals completed a survey regarding their perceptions of SCPs, including barriers to implementation, strategies for implementation, the role of oncology providers, and the importance of topics in SCPs (diagnosis, treatment, recommended ongoing care, and the aspects of ongoing care that the oncology practice will provide). RESULTS: Among 245 providers (response rate of 70%), 52% reported ever providing any component of an SCP to patients. The most widely reported barriers were lack of personnel and time to create SCPs (69% and 64% of respondents, respectively). The most widely endorsed strategy among those using SCPs was the use of a template with prespecified fields; 94% of those who used templates found them helpful. For each topic of an SCP, although 87% to 89% of oncology providers believed it was very important for primary care providers to receive the information, only 58% to 65% of respondents believed it was very important for patients to receive the information. Furthermore, 33% to 38% of respondents reported mixed feelings regarding whether it was the responsibility of oncology providers to provide SCPs. CONCLUSIONS: Practices need additional resources to overcome barriers to implementing SCPs. We found resistance toward SCPs, particularly the perceived value for the survivor and the idea that oncology providers are responsible for SCP dissemination.