Retention of Enrollees Following a Cancer Diagnosis Within Health Maintenance Organizations in the Cancer Research Network

Abstract

Population laboratories with complete clinical information on episodes of care are needed to support research on the quality of care delivered to cancer patients. Data resources within the Cancer Research Network (CRN) may overcome many of the limitations of existing cancer databases, but their potential clinical value depends on the stability of the enrolled population. To assess this issue, we studied the retention rates among survivors of the 132 580 patients diagnosed with cancer from January 1, 1993, through December 31, 1998, who were enrolled at five health maintenance organization sites participating in the CRN. Enrollees were followed from cancer diagnosis through death, disenrollment, or the end of follow-up (i.e., December 31, 1999). The retention rate among survivors for all cancers combined at 1 and 5 years after cancer diagnosis was 96.0% (95% confidence interval [CI] = 95.9% to 96.1%) and 83.9% (95% CI = 83.4% to 84.3%), respectively. The proportion of enrollees diagnosed with cancer who remained enrolled and available for evaluation suggests that the CRN is well-suited for studies of the quality of care for cancer patients, survivorship, and long-term outcomes.

Mental health service utilization among long-term cancer survivors

“…[16] Case retention following a cancer diagnosis within this group has been documented to be 96% at 1 year and 84% at 5 years. [6] Behavioral health services are available to patients at all sites.…”

Survivorship research based in integrated healthcare delivery systems

“…Perhaps foremost among these capabilities is the use of a large population base with >38,000 cancer diagnoses per year and an ability to follow survivors over time. 12 The population base includes substantial minority populations that have been incorporated in studies, allowing investigation of disparities. 13,14 Also key is the availability of cancer registries and many other types of electronic data that can be analyzed independent of other information [12][13][14][15]18 or used in conjunction with other types of data.…”

“…12 The population base includes substantial minority populations that have been incorporated in studies, allowing investigation of disparities. 13,14 Also key is the availability of cancer registries and many other types of electronic data that can be analyzed independent of other information [12][13][14][15]18 or used in conjunction with other types of data. 16,[19][20][21][22][25][26][27][28][29]31,35,36 The CRN has experience with many data-collection modalities, including medical record abstraction, 16,[19][20][21][22][25][26][27]35,36 patient and physician surveys, 28,29,[31][32][33]35 tissue specimen acquisition, 36 and organizational assessment.…”

“…17,18,25,30,31,38 To date, the CRN survivorship research portfolio includes studies of breast, colorectal, lung, ovarian, and prostate cancers as well as ductal carcinoma in situ. [12][13][14][15][16][17][18][19][20]22,[25][26][27][28][29][30][31][34][35][36] Studies have examined patterns of care and how age and racial and ethnic disparities, decision-making, and diffusion of research results impact patterns of care. [13][14][15]19,29,35 Studies also have focused on treatment outcomes, including effectiveness in preventing recurrences and death, the occurrence of unanticipated late effects, and quality of life.…”

“…Relying exclusively on electronic data, the study indicated that 96% of adults diagnosed with any invasive cancer remained enrolled at 1 year after cancer diagnosis (excluding deaths), and 84% remained enrolled at 5 years. 12 The reasons for disenrollment were not gathered in the study; however, anecdotally, we believe that the most common reasons are loss of coverage because of changes in employment of the patient or family member who subscribes, a geographic move out of the plan's coverage area, or an employer's decision to no longer to offer the plan. The study demonstrated the CRN's capacity for secondary data analysis and established that the CRN could follow a large proportion of survivors for at least 5 years after diagnosis.…”