Few instruments are available to measure cancer care coordination from the patient perspective. Furthermore, prior instruments do not include items that address significant domains, including the facilitation of transfers and health information technology-enabled coordination. Finally, no instruments have been developed specific to cancer patients or health care providers in the Veterans Health Administration.
The objective of the current proposal is to develop a measure with which to systematically measure cancer care coordination from the patient perspective: the Cancer Care Coordination Measure (CCC-M). Emerging activities in cancer care are being targeted towards coordination. Due to the pervasiveness of coordination activities, having measures available that accurately and reliably capture the experience of coordination will be of great value in assessing the effect of these interventions.
To develop the Cancer Care Coordination Measure (CCC-M), we proposed a mixed method study. First, semi-structured interviews with patients and providers were done to review prior coordination items and generate new items based upon missing conceptual domains, as well as unique Veteran patient and VHA health care provider experiences. Second, we fielded a quantitative instrument to test its psychometric properties
In AIM 1, interviews were performed among 25 cancer patients. The average age of the respondents was 68 years. Approximately 50% reported a "comfortable" household income, and 12% were African-American. In interviews, Veterans expressed that there was a need to have care coordination needs more explicitly addressed and active mechanisms to meet those needs, especially at the outset of treatment. Midway through the cancer care trajectory, a clear shift occurred as patients perceived more effective coordination as they adjusted to the demands of a new care system. Patients suggested several solutions to increase coordination in the cancer system, such as touring health care facilities in advance of treatment and nurse navigators.
In AIM 2, we have conducted 140 telephone surveys among cancer patients. This population includes patients diagnosed with prostate (39), lung (32), head & neck (34), colorectal (31), and breast (4) cancer. Of those completing the survey, 96% were male, 76% White, 19% African American, 51% expressed "getting by" on present income and 29% expressed being "comfortable". Higher scoring items included being informed about appropriate treatment and the reasons for tests or treatments. Lower scoring items included information about financial entitlements and caregiver support.
At least five factors emerged from factor analysis, including items related to informed decision-making, convenient scheduling, emotional support, financial needs, and MyHealtheVet use. Four items asking how often you used My HealtheVet for different functions (test results, physician notes, secure messaging with oncologist or PCP) had strong correlations with each other.
Among Veterans with cancer, improved care coordination may lead to an improvement of the patient experience. Based upon our interview findings, we found that providing explicit information at the outset of treatment about what to expect may reduce patient barriers to navigating a complex care system.
We can now measure care coordination among patients with cancer treated in the VA. With this new set of tools to monitor the coordination needs of the Veteran cancer population, we can better understand how cancer care is being delivered. The impact of available VA facility resources and future system improvements can be evaluated based upon their consequences for care coordination.
Understanding the perspective of Veteran cancer patients offers invaluable insight to aid cancer care providers and policy makers in optimizing the quality of VA cancer care.
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Grant Number: I21HX001901-01A1
None at this time.