NCDB and ACS-CRP: Working together to develop risk-stratified strategies for surveillance

A number of organizations—including the Institute of Medicine (IOM), the Patient-Centered Outcomes Research Institute (PCORI), and the Agency for Healthcare Research and Quality’s Developing Evidence to Inform Decisions about Effectiveness Network Cancer Consortium—have identified improvements in surveillance after active treatment for cancer as a priority. Current guidelines do not account for individual risk and are based on limited and mostly outdated evidence.

Three funding contracts

The PCORI has awarded three research funding contracts to the American College of Surgeons Cancer Research Program (ACS-CRP) of the Alliance for Clinical Trials in Oncology with the goal of developing a more patient-centered and individualized approach to post-treatment surveillance of colorectal, breast, and lung cancers. Partnering with the Commission on Cancer (CoC) of the ACS, this program will study follow-up and recurrence after cancer treatment in an effort to identify strategies to tailor surveillance based on individual risk.

Later this year, a CoC special study will be launched through the National Cancer Data Base (NCDB) to determine current surveillance practice and recurrence outcomes for colorectal, breast, and lung cancers. The goal of this part of the project is to better understand how surveillance testing is being used to monitor patients and to determine the effect of surveillance on outcomes.

These studies have the potential to benefit CoC-accredited programs and the patients treated in those facilities. The ACS-CRP is working closely with the CoC to design the studies to evaluate the current approach to data collection, particularly as it relates to recurrence, and to determine the most effective methods for capturing this important outcome using this defined cohort of patients. A recent CoC study found that recurrence data for more than half of patients in the NCDB are incomplete, but the report failed to identify systemic factors that may have resulted in the missing data.*

In addition, these studies will look at the validity of some of the existing data in the NCDB and will be used to begin developing strategies and creating opportunities to improve the utility of the information in monitoring outcomes. The CoC and NCDB have made this area of investigation a priority over the last several years.

Front-line assistance

Many tumor registrars are directly engaged in the design of this project and have provided front-line input regarding the best ways to pursue our goals and help the accredited programs to maximize the value of their registry data. Select sites will be engaged in a pilot study over the summer to test and optimize the approaches to data collection. Significant effort is being made to ensure the objectives of the study can be met while minimizing the burden on cancer registrars at CoC sites.

The CoC has identified this special study as a priority and an important initiative for improving patient-centered care. It will provide important data regarding recurrence, which has the potential to improve the value of the NCDB for cancer research and quality improvement. Furthermore, the results of this study will provide much-needed data to inform our approach to surveillance after the active treatment of cancer and improve the quality of cancer care for survivors. Participation in this study will also apply toward Standard 5.7 for CoC accreditation. During the study period, staff of the ACS-CRP/Alliance for Clinical Trials in Oncology will be available as a resource for registrars and cancer liaison physicians. An official announcement will be sent via e-mail later this year.

An additional goal of the research involves using surveillance data from past breast and colorectal trials of the Alliance for Clinical Trials in Oncology to evaluate risk and patterns of recurrence and treatment toxicities. We anticipate being able to provide a complete recording of relevant elements that can be used to construct a risk-stratified natural history model for recurrence and create shared resources from previously completed clinical trials that can be used for future research.

These projects also will engage stakeholders, such as cancer survivors, providers, and health outcomes researchers, in the development of patient-centered, risk-based, tailored approaches to post-treatment surveillance for breast, colon, and lung cancer. Decision support tools will be developed to inform stakeholders and tailor surveillance to the individual patient. Although each research contract (breast, colorectal, lung) has disease-specific objectives, the overall goal is to identify the key priorities most relevant to patients, caregivers, clinicians, and health care systems for consideration in post-treatment surveillance decisions.

Acknowledgment

This work was partially supported through a PCORI Program Award (CE-1304-6543; CE-1304-6855; CE-1306-00727).


*In H, Bilimoria KY, Stewart AK, et al. Cancer recurrence: An important but missing variable in national cancer registries. Ann Surg Oncol. 2014;21(5):1520-1529. doi: 10.1245/s10434-014-3516-x. Epub 2014 Feb 7.

American College of Surgeons. Cancer Program Standards 2012, Version 1.2: Ensuring Patient-Centered Care. Available at: www.facs.org/cancer/coc/programstandards2012.html. Accessed June 23, 2014.

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