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J Macey

Publications and source records attributed to J Macey.

5 recordsLinked to original sources
PubMed2001

A qualitative study of subject recruitment for familial cancer research.

PURPOSE: Familial epidemiological studies of cancer raise familiar ethical issues relating to informed consent and recruitment of participants. When the family is the unit of study, however, additional complexity arises. Educating and recruiting participants must be tailored to the relatives', as well as the proband's needs. An understanding of the prospective participants' concerns will aid the development of strategies for recruitment and will facilitate informed and voluntary consent. In the present study, qualitative methods were used to investigate these issues. METHODS: Focus groups with cancer patients, relatives of cancer patients, and individuals from the general population were separately conducted to identify issues that concern people who are asked to participate in family studies. RESULTS: Many of the issues which arose in the course of the focus group discussions were similar to those in any study. Yet, some of the themes emerging from the discussions were specific to familial research. In particular, participants expressed that the study should be endorsed by a trusted and familiar source; group discussions might facilitate the consent process; the benefit of the research should be clear and personal, as well as benefit the participants' family members; risks of participation should be explicit (e.g., insurance discrimination); and education about the disease and its familial nature would maintain commitment to the study. Finally, participants expressed concerns about being approached by programs to facilitate the identification and recruitment of other family members for research on family health issues. CONCLUSIONS: Findings from this study will aid future familial studies in developing a protocol that both adequately informs potential participants of the nature of familial research and maximize participation.

Adult↗
PubMed2000

Ontario familial colon cancer registry: methods and first-year response rates.

The Ontario Familial Colon Cancer Registry (OFCCR) is a novel registry that collects family history information, epidemiologic data, blood samples and tumour specimens from a population-based sample of colorectal cancer patients and their families. Families are classified as either high familial risk, intermediate familial/other risk or low (sporadic) risk for colorectal cancer. Obtaining high response rates in genetic family studies is especially challenging because of both the time commitment required and issues of confidentiality. The first-year response rate was 61%, resulting in 1,395 participating probands. In an attempt to assess potential response bias, we compared participants with non-participants. The age and sex of participants did not differ from non-participating probands; however, cases in rural areas were somewhat more likely to participate. To date, 57% of 1,587 relatives participated; females were more likely to participate, and relatives of low familial risk were least likely to participate. The OFCCR is an excellent resource that will facilitate the study of genetic and environmental factors associated with colorectal cancer.

Adult↗
PubMedDate not supplied

Cancer prevention in the community: a survey of community residents.

Lifestyle exposures account for the greatest proportion of risk factors for cancer, yet these exposures have proven most difficult to alter. Despite intensive intervention efforts, many behaviour change programs are ill suited to the community. This research was undertaken to increase our understanding of prevention activities of interest to a sample of residents in two Ontario communities. 248 (62.3%) adult residents responded to a semi-structured self-administered questionnaire including open-ended questions on health issues, exposures and prevention activities of interest. While some of the beliefs expressed by respondents might have been anticipated (e.g., cigarette smoking and family history increase risk of cancer), others were not (e.g., only between 40 and 75% of respondents thought a high fat diet increased risk). Furthermore, many of those with personal health concerns expressed an interest in prevention. This process is proposed as a first step in launching more appropriate and sustainable community-based health promotion programs for cancer prevention.

Adult↗