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BACKGROUND/RATIONALE:
Delivery of quality care to the advanced cancer patient includes adequately addressing the psychosocial and supportive care needs that the patient will experience over the course of his or her disease. However, specific concerns of veterans with advanced cancer, their perceptions of their disease, and expectations of the VA health care system, as identified by the patients themselves, are largely unknown.
OBJECTIVE(S):
The specific aims of this project are to: 1) identify the concerns that veterans with advanced cancer feel are important, using the grounded theory research method; 2) determine how these concerns change with disease progression; 3) explore the relationship between cancer-related symptoms and a patient’s perception of their needs; and 4) develop and pilot a tool for assessing the needs of advanced cancer patients beyond pain and symptom control.
METHODS:
Grounded theory is a well-established research method that is designed to generate theory from empirical data, rather than validate existing theory. This theory generating method is often used to study an area which has not been extensively researched or where existing research does not adequately reflect the perspective of the subjects. Hence, it is an ideal research tool to use in this under-studied area.
FINDINGS/RESULTS:
Several elements of the patient decision-making process related to reporting symptoms and the unmet needs they experience have been identified. There are several components of this process that have the potential to encourage or discourage patients from bringing important information to their health care providers. Obstacles to patient's sharing information with providers often lead to unmet needs. Interviews with providers have been conducted to enhance understanding about how patient needs are elicited and addressed. Whether and how this particular group of patients is similar to or different from other patient groups has been explored through a comparison group of patients matched on age, diagnosis and oncology provider, but differing on insurance coverage, income and education. Based upon the interview data, a QUERI patient survey has been developed and is designed to elicit unmet needs in common areas identified during patient interviews. The survey is intended to target specific unmet needs of oncology patients. The survey has been piloted with VA oncology patients, and is currently being piloted with the comparison group of patients to discern whether and how responses differ.
IMPACT:
The study has identified important insights into the VA patient experience of receiving care, as well as insights into how patient/provider interactions need to be tailored to patient groups differently to be effective.
PUBLICATIONS:
None at this time.
DRA:
Aging and Age-Related Changes, Chronic Diseases, Health Services and Systems
DRE:
Communication and Decision Making, Quality of Care, Technology Development and Assessment
Keywords:
Cancer, End-of-life, Patient preferences
MeSH Terms:
none
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