Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral

Abstract

Both physician and patient play a role in the referral process for cancer genetic counseling. Access to such counseling is not optimal because some eligible patients are not being reached by current referral practice. We aimed to identify factors associated with the initiator of referral. During a 7-month period, we recorded demographic characteristics like gender, personal and family history of cancer, ethnicity and eligibility for genetic testing for 406 consecutive counselees using a specially designed questionnaire. Counselees were seen in a university hospital or a community hospital (n 07) in the Netherlands. We also recorded educational level of each counselee, clinical setting and who initiated referral. Descriptive statistics were used to describe the counselees' general characteristics. We analysed the association between counselee characteristics and the initiator of referral by logistic regression. The majority of counselees seemed to have initiated referral themselves but were indeed eligible for genetic testing. In comparison to the general population in the Netherlands, the counselees had a higher level of education, and there were fewer immigrants, although a higher level of education was not found to be a facilitating factor for referral. The clinical setting where a counselee was seen was associated with initiator of referral, although this relationship was not straightforward. There is a complex interaction between clinical setting and initiator of referral, which warrants further research to elucidate the factors involved in this relationship. Patients seen in cancer genetic counseling do not reflect the general population in terms of educational level or ethnicity.

Referral to cancer genetic counseling: do migrant status and patients’ educational background matter?

“…Patients’ request for cancer genetic counseling and their concerns about family members are important determinants for cancer genetic counseling. Van Riel et al ( 2012 ) showed that the majority of counselees initiate a referral themselves (van Riel et al 2012 ), while Brandt et al ( 2008 ) found that 73% of a group of primary care physicians and specialists base patient eligibility for referral on patient request, and 54% did not refer eligible patients due to patient disinterest. When physicians are not sure whether screening is recommended, patients who expect screening and those who are more anxious, are more often referred (Haggerty et al 2005 ).…”

Communication Between Breast Cancer Patients Who Received Inconclusive Genetic Test Results and Their Daughters and Sisters Years After Testing

“…Furthermore, we have no data on the ethnicity of our sample. Van Riel et al (2012) showed that counselees referred for cancer GT to our department were primarily Caucasian, which should be taken into account when interpreting our results. Finally, in contrast to, for example, the U.S.A., the Netherlands is a small country.…”

Systematic development of a training program for healthcare professionals to improve communication about breast cancer genetic counseling with low health literate patients

“…We conducted a group interview with breast surgeons and specialized nurses, who are the main referrers to genetic counseling for patients with breast cancer [8,27] to assess their preferences regarding content and design of a training program and to gain insight into conditions to participate. They were recruited from different breast cancer teams from different hospitals in Western Netherlands.…”