Health-related quality of life (HR-QOL) is increasingly being regarded as an important endpoint for chronic disease and cancer management. HR-QOL encompasses perceptions of both positive and negative aspects of physical, emotional, social, cognitive, and spiritual functioning as well as the discomfort and symptoms produced by disease or treatment. An understanding of the pattern of HR-QOL concerns for patients with colostomies can provide the basis for needed clinical interventions. There has been no previously published research within the VA examining HR-QOL issues related to intestinal stomas.
The immediate objectives are to identify health-related Quality of Life (HR-QOL) concerns specific to veterans with ileostomy and colostomy intestinal stomas and relate those concerns to underlying disease state, type of stoma, time with stoma, as well as other demographic characteristics. We also want to learn about the methods of adaptation used by, and skills required for, adaptation to ostomy, as well as challenges, which persist.
This is a descriptive multi-method study using 1) survey and 2) qualitative focus group data. The study is being coordinated at SAVAHCS, and performed at three VAMC sites: SAVAHCS, GLAHCS (West LA Campus), and Roudebush VAMC. The sample includes veteran patients in VA care with intestinal stomas and randomly selected matched controls with similar disease states, but without stomas. We surveyed 688 ostomates and their matched controls (820) based on our computer searches. We targeted racial and ethnic groups, length of time with ostomy, and ostomy type in order to perform sub-group analyses. Descriptive and multiple linear and logistic regressions will be used to describe and estimate the associations of predictors to HR-QOL. We then had eight focus groups drawn from the top and bottom survey HR-QOL quartile scores at the GLAHCS and Roudebush VAMC sites to explicate and deconstruct the etiologic associations and management strategies discovered in our survey data using content analysis.
We have completed accrual for Phase I and Phase II of our study, and are currently analyzing the results. We have had 506 usable survey responses (235 ostomates, 271 controls) for a total response rate of 34%. When we remove the patients who we were not able to reach based mainly on unreliable addresses, or were ultimately ineligible (such as related to death or previously had their ostomy removed), our response rate will likely be over 75%. There are many HR-QOL variables that are greatly different and surprisingly similar for cases and controls. Related to the focus groups at Roudebush (13) and GLAHCS (14), many themes have been identified in the initial coding of transcripts. These include common early and late problems, solutions to these problems, and recommendations for future patients.
Anticipated impact is to generate targeted psychosocial interventions designed to facilitate adaptation to stomal challenges and factors impinging on HR-QOL in patients with stomas. Based on the results, a program of research will be developed to test interventions that address priority patient concerns and patient knowledge, attitudes and skills used to improve their QOL.
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Quality of life