Consumer Indicators of Quality Genetic Services
N Isaac, NL Wilker, B Little, C Holmes, ACM Smith, M Davidson
Alliance of Genetic Support Groups, Washington, DC
The Partnership for Genetic Services Pilot Program represents a culmination of the Alliance of Genetic Support Groups’ long standing commitment to provider education. The Partnership Program is working with providers-in-training, in 12 Midwest medical schools. The Partnership for Genetic Services Pilot Program represents a culmination of the Alliance of Genetic Support Groups’ long standing commitment to provider education. The Partnership Program is working with providers-in-training, in 12 Midwest medical schools, and providers-in-practice, in two Pacific Northwest Managed Care Organization (MCO) pilot sites, to enhance the delivery of genetic services. To promote this goal, the Partnership Program used focus groups and surveys sent to Alliance members to gather input from consumers about what they viewed as the most essential elements of quality genetic services. The Consumer Indicators of Quality Genetic Services articulates the consumer’s perspective on genetic service delivery. The focus groups and surveys indicate that consumers view the referral to condition-specific specialists" as the most essential indicator of quality genetic services. Other Indicators include "coverage and access to medications and supplements", "collaboration between consumers and providers", "availability of consumer oriented resources", "consideration of psychosocial impact at all life stages", "availability of genetic specialist", "procedures and policies about confidentiality are established", "information provided is geared to the consumers’ needs and culture", "availability and integration of genetic research information", and "referrals to genetic peer support resources are offered". The Consumer Indicators serve as tools in medical schools, to demonstrate what families want and need, and in MCO pilot sites, to evaluate strengths, weaknesses and gaps in genetic service delivery. This tool could also be used in the public health arena to shape the integration of genetic services into the health care delivery system.
The Abstracts of the Second National Conference on Genetics and Disease Prevention, Baltimore, MD, December 6-8, 1999, will be published in COMMUNITY GENETICS. For more information please refer to the journal home page  . © 1999 S. Karger AG, Basel.
Health Beliefs and Intention to Participate in Cancer Screening Activities
LA Jacobs
University of Pennsylvania School of Nursing, Philadelphia, PA
Colorectal cancer (CRC) is one of the most common neoplasms in both men and women, and perhaps the most frequent form of hereditary neoplasia, but when detected at an early stage, the cure rate is as high as 90-95%. Its occurrence in two or more close relatives by chance is relatively common; however, family history of CRC is recognized as a risk factor for disease. A variety of factors influence the extent to which individuals adopt preventive health behaviors and utilize health services. Engaging in preventive health programs seems to be related to an individual's underlying motivations, attitudes, and beliefs about health and illness. Patients (n=1081) were identified by the Pennsylvania Cancer Registry and subjects were first degree relatives (FDRs) of patients diagnosed with CRC under age 60 in 1995 in the State of Pennsylvania. 174 patients and 90 relatives agreed to participate. Logistic regression models included constructs of the Health Belief Model (HBM) perceived susceptibility, seriousness, benefits, barriers, health motivation, and confidence, and sociodemographic variables age, gender, and level of education. An individual’s intention to participate in CRC screening activities was the outcome variable. The final model consisted of the variables: perceived barriers, perceived seriousness, and level of education. (OR: 2.39 [95% CI: 1.15-5.00]) the more barriers that the FDR perceives to be in the way of getting screened, the less likely that individual is to get screened. (OR: 0.41 [95% CI: 0.19-0.87]) the more serious the FDR perceives the situation to be, the better the chance is that the individual will get screened. (OR: 0.31 [95% CI: 0.11-0.85]) the more educated the individual, the more likely they will screen. These data highlight the need to understand the health beliefs and other factors that affect screening behaviors of individuals at risk for developing cancer in order to plan effective public health screening programs.
The Abstracts of the Second National Conference on Genetics and Disease Prevention, Baltimore, MD, December 6-8, 1999, will be published in COMMUNITY GENETICS. For more information please refer to the journal home page . © 1999 S. Karger AG, Basel.
Does Family History of Colorectal Cancer Influence the Return of Fecal Occult Blood Tests in a Mass Screening Campaign?
JF Thrasher, DM Pillittere, KM Cummings, C Li, N Natarajan
Roswell Park Cancer Institute, Buffalo, NY
Genetic susceptibility to colorectal cancer (CRC) has received increased exposure in the media, however the impact of such preventive health messages on screening practices has received little scientific attention. In this cross-sectional study, we examined data from a voluntary, media-based screening campaign conducted in May 1999 in Western New York, in order to evaluate whether self-report of a first-degree relative (FDR+) with CRC influenced the return of a free Fecal Occult Blood Test (FOBT) kit for free analysis and, if necessary, free treatment. Participants (1,794 females, 1,249 males) were at least 50 years old, had not undergone CRC screening in the past year, and filled out a brief questionnaire on demographics and CRC when given their FOBT kit. 15.3% (316 females, 149 males) of participants reported a FDR+, and 47.2% of participants returned the kit. Bivariate analysis showed that those with a FDR+ were more likely to be female, more educated, and slightly older than participants without a family history of CRC. To estimate odds ratios (OR) and 95% confidence intervals (CI) associated with FDR+ and returning the kit, unconditional logistic regression was used, adjusting for age, sex, race, education, smoking status, and previous use of a FOBT. FDR+ was positively associated with returning the kit (OR = 1.15; 95% CI = .93, 1.43), although the relationship was not statistically significant. Stratification by adjustment variables did not significantly alter this result. Overall, these results suggest that participants with a self-reported FDR+ are not more likely to return the FOBT kit. Public health messages may need to be specifically tailored to this high-risk group to increase compliance with current screening recommendations.
The Abstracts of the Second National Conference on Genetics and Disease Prevention, Baltimore, MD, December 6-8, 1999, will be published in COMMUNITY GENETICS. For more information please refer to the journal home page . © 1999 S. Karger AG, Basel.
Genetic Testing for Breast Cancer: An Issue of Money
AW Helmes, DJ Bowen, J Bengel
Fred Hutchinson Cancer Research Center, Seattle, WA
Genetic testing for breast cancer susceptibility is now available to the general public through physician referral. Many institutions within the health care system face new challenges of making recommendations and policies concerning genetic testing. Little is known about how potential users view the economics of genetic testing for breast cancer. The present study assessed this in a random sample of 340 female patients of a primary care physician's network.
Many women (61.7%) agreed that physicians have an obligation to offer genetic testing for breast cancer risk to all patients. More specifically, only 37.6% agreed that physicians have an obligation to offer genetic testing only to those patients who have a family history of breast cancer, 24.9% agreed that patients who are interested should ask their physicians for it and 67.7% agreed that anyone who wants the test should be able to get it regardless of whether or not they can pay for it. Most women (86.0%) would not be interested in the test if they had to pay the maximum cost of $2,400 themselves, whereas 79.4% would be interested if their health insurance company covered the cost. Only 5.4% would be willing to pay more than $200 for a test.
Our data shows that interest in genetic testing for breast cancer is dependent on the amount women have to pay. Women are likely to approach their physicians with the request for genetic testing, and health care institutions need to have payment policies in place.
The Abstracts of the Second National Conference on Genetics and Disease Prevention, Baltimore, MD, December 6-8, 1999, will be published in COMMUNITY GENETICS. For more information please refer to the journal home page . © 1999 S. Karger AG, Basel. |
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