In response to PAR-12-145, this R21 application seeks funding to develop metrics to evaluate the content of treatment summaries (TSs) and survivorship care plans (SCPs) provided to cancer survivors relative to Institute of Medicine (IOM) recommendations. There are approximately 13.7 million cancer survivors in the U.S., and this number is increasing. Survivors require life-long care and follow-up, surveillance for cancer and non-cancer conditions, and monitoring and remediation of the effects of treatment. Workforce issues and patient preferences will lead most cancer survivors to receive long term follow up in primary care rather than specialty oncology settings. To foster optimal treatment after the transition to primary care, the President's Cancer Panel, the IOM, COC, and other groups have called for TSs and SCPs to be provided to cancer patients completing primary therapy. These summaries outline disease and treatment exposures, as well as providing education regarding long-term and late effects, resources, and a comprehensive follow-up plan for medical and psychosocial care. The IOM has recommended content for these documents, but descriptions are broad and content differs by cancer site. Numerous TS and SCP templates are in use, and the number and variety of these templates is likely to expand as centers begin implementing care plans in earnest due to upcoming mandates. Assessment tools and metrics are needed to allow for determination of the adequacy of the information presented, comparisons across treatment facilities and disease sites, and relative efficacy of various content elements and domains. Our group has previously created metrics to assess the content of TSs and SCPs for breast cancer survivors, demonstrated psychometric adequacy, and used these tools to describe TSs and SCPs provided within the LIVESTRONG Network of Survivorship Centers of Excellence. This application seeks support to expand our metrics to the assessment of TSs and SCPs being provided to survivors of the 3 next most common cancer sites among survivors: prostate, colorectal, and corpus uteri cancers. The project will move through two phases. In the first, detailed information regarding disease, treatment, and follow-up recommendations will be described for each cancer site. This information will be vetted through a Scientific Advisory Board of content experts for accuracy and completion, and mapped onto IOM recommended content to create disease-site specific tools to assess concordance of TSs and SCPs to IOM recommendations. In the second phase, these tools and their associated scoring protocols will be reviewed by survivorship experts and refined iteratively until consensus is reached. Trained raters will then code a series of de-identified TSs and SCPs to allow for assessment of psychometric properties. The overarching goals of this work are to foster research concerning the efficacy of TSs and SCPs by developing a series of robust and cost-effective disease-site specific metrics that can be used by researchers, clinicians, and others to support, monitor, and inform implementation efforts as TSs and SCPs become more commonplace.

Public Health Relevance

Treatment summaries (TSs) and survivorship care plans (SCPs) are soon to be mandated by a number of agencies and professional groups for cancer survivors at the end of primary therapy. There are a range of materials that are being developed and implemented clinically, most of which transmit some but not all of the information recommended by the Institute of Medicine (IOM) as a minimum standard. The proposed study develops a suite of measures to allow for assessment of TS and SCP fidelity to IOM recommendations that will not only inform efforts to provide optimal care to survivor populations, but serve as a basis for comparisons of content provided across treatment facilities and disease sties, systematic review and meta-analysis, and facilitate research to determine relative efficacy of various content elements and domains.

National Institute of Health (NIH)
National Cancer Institute (NCI)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel ()
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Castro, Kathleen M
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University of Pennsylvania
Schools of Medicine
United States
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Palmer, Steven C; Jacobs, Linda A; DeMichele, Angela et al. (2014) Metrics to evaluate treatment summaries and survivorship care plans: a scorecard. Support Care Cancer 22:1475-83