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The Cost of Hope: A Candid Roundtable Discussion

Amanda Bennett, Ronald M. Bukowski, Keith Flaherty, J. Cameron Muir, Craig D. Turner, and Sam Donaldson

For Amanda Bennett and her husband Terence Foley, a 7-year battle with kidney cancer resulted in a price tag of more than $600,000, most of it spent in the final 2 years of his life. Ms. Bennett’s memoir, The Cost of Hope, chronicles the couple’s emotional struggle and the financial irrationality she uncovered when navigating the cancer continuum. She shared her experience in her keynote address at the NCCN 18th Annual Conference, which was followed by a roundtable discussion in which panelists discussed the difficulties inherent in dealing with cancer “uncertainties,” the balancing act that seeks to maintain hope in the context of a poor prognosis, and the problem of a health care system that spends too much on some aspects of care while ignoring others.

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Documentation of Pain in Comprehensive Cancer Centers in the United States: A Preliminary Analysis

Sharon M. Weinstein, Dorothy Romanus, Eva M. Lepisto, Cielito Reyes-Gibby, Charles Cleeland, Rex Greene, Cameron Muir, and Joyce Niland

The National Comprehensive Cancer Network (NCCN), an organization of 19 of the world's leading cancer centers, developed and communicated a cancer pain treatment guideline. NCCN seeks to implement guidelines through performance measurement using a NCCN Oncology Outcomes Database. This is a preliminary report from the NCCN Cancer Pain Management Database Project. The primary objective of this NCCN Cancer Pain Management Database Project study is to evaluate the frequency, methods, and extent of documentation of cancer pain assessment and managementat NCCN institutions. A pain data dictionary and related data collection forms were first developed. The records of 209 breast cancer patients with bone metastases were then studied. The frequency of pain mentions, type of pain assessment tool used, pain characteristics, type of clinician documenting pain, location in the medical record, and pain treatment characteristics were noted. The majority of clinical encounters included pain mentions, although considerable variability was found in pain documentation between providers and between inpatient and outpatient settings. Nurses more frequently recorded pain, usually as a numeric pain intensity score. Pain specialists were more likely to record a complete description of pain. A significant minority of patients experienced moderate to severe pain. In a small subgroup of patients with moderate to severe pain, pain treatment was not recorded. The undertreatment of cancer pain has been a focus of investigation and review for the past two decades. Quality improvement efforts to raise the standard of pain management have been underway. The results of this study highlight the need for standardization of pain documentation in comprehensive cancer centers as a prerequisite for the proper assessment of cancer pain and the improvement of clinical outcomes of pain management.