It is known that only 45% of patients with early-onset breast cancer and 10% of healthy women at high risk for hereditary breast and ovarian cancer in the USA had discussed genetic testing with a health professional (Brown et al. 2005; Levy et al. 2009), which would lead to poor referral rates for them and their family members. For the UK, it has been reported that characteristics of counselees may be associated with their ability to bring up a positive family cancer history, or to ask questions about the possible hereditary aspects (Brain et al. 2000; Wonderling et al. 2001) and may thus play a role in initiating a referral. It has been shown that counselees who were referred for cancer genetic counseling and participated in studies on psychosocial aspects of counseling more often had a higher educational background, suggesting that less well-educated patients have less easy access to a family cancer clinic in the Netherlands (Pieterse et al. 2006), the UK (Armstrong et al. 2002) and the USA (Bluman et al. 1999). Next to suboptimal referral of counselees willing to undergo genetic testing, some counselees eligible for genetic testing may decline referral. How large this group is, is not easily determined. It is known that factors like anxiety (Geer et al. 2001), financial barriers (Armstrong et al. 2005; Forman and Hall 2009) and problems with contacting family members about their specific cancer diagnosis (Appleby-Tagoe et al. 2011) play a role.

The aim in this study was to explore whether any demographic factors influence whether patient or physician takes the initiative for referral to cancer genetic counseling. In daily practice, we would expect to see fewer counselees with a foreign background and more with a higher educational level compared to the general population. We therefore investigated whether counselees’ level of education influenced who initiated the referral.

A substantial number of our counselees had a high educational background, which is in accordance with other studies on cancer genetic counseling in the UK (Brain et al. 2000), the Netherlands (Van Asperen et al. 2002) and the USA (Morgan et al. 2010) and on reproductive genetic counseling (Aalfs et al. 2007) in the Netherlands. However, since our results show that it is not a facilitating factor for initiating referral, other factors, like socioeconomic status, may play a role. It has been shown that counselees for cancer genetic counseling are less socially deprived and more affluent than the general population (Holloway et al. 2008). Cognitive ability is often associated with socioeconomic status, but explains only some of the differences in socioeconomic inequalities in health (Batty et al. 2006). Since genetic counseling and testing are covered by compulsory health insurance in the Netherlands, financial barriers do not play a role. This was also shown in a study by Culver et al. in which they offered genetic counseling for free (Culver et al. 2001). Participants who accepted genetic counseling were more often better educated than those who declined (Culver et al. 2001). Other factors, like health literacy and the level of empowerment of counselees, may also play a role. Counselees with a higher educational level are more often able to explain their need for genetic counseling to their physician, or know more about the aspects of genetic factors in cancer and are therefore more often referred to a genetics service. Studies have shown that patients with a higher educational level know more about genetics (Etchegary et al. 2010) and have more often heard about genetic testing (Baer et al. 2010). From our data, we cannot explain the high proportion of counselees with a higher educational background. It would be interesting to see if our counselees with a higher educational background did indeed know more about hereditary cancer and genetic counseling and therefore discuss this subject earlier with their physician, leading to more referrals of the better educated counselees. In this view, also empowerment can play an important role. Patients, who bring information from other sources to their physician, are also more often referred by their physician to other sources of information (Lewis et al. 2009). Physicians often refer to other health professionals (Lewis et al. 2009), so this might include referring to a genetic counselor of clinical geneticist when patients ask questions about hereditary cancer. We found that unaffected counselees eligible for predictive genetic testing more often found their way to a family cancer clinic without the help of a physician. These counselees are self-referred, but brought a written referral from their GP. This could be partly due to the procedure in the Netherlands: when a mutation in a cancer gene is first identified in a family, the genetics departments provide a letter for the proband to give to his/her family members. They thus have some information about the genetic testing procedure and know where to go for further help.

Less than 20% of the counselees were not eligible for genetic testing, suggesting physicians can accurately select candidates for cancer genetic counseling, although this is contraindicated by studies in other West European countries in which physicians are reported to lack confidence in making their selection (Ardern-Jones et al. 2005; McCann et al. 2005; Nippert et al. 2011). Similar percentages of counselees seen in the two clinical settings were not eligible for genetic testing. Prior to the study, we expected cancer genetic counseling to be more accessible in the community hospitals, due to less travelling distance and more familiarity with the hospital where they are treated, which could have resulted in a higher percentage of ineligible counselees. This effect might be counterbalanced by our finding that the initiative for referral is more often taken by a physician in the community hospitals, and they apparently select patients suitable for counseling correctly. If counselees are not eligible for genetic testing, this does not mean that they are not at increased risk of getting cancer and referral is useless since genetic counseling also involves cancer risk assessment and assessing eligibility for screening (e.g. mammography and colonoscopy) and reassurance of counselees. Due to the design of our study, we cannot deduce how many counselees eligible for referral are not being referred for cancer genetic counseling. Other studies suggest that this percentage is high: only 22% of the Australian patients who might benefit from cancer genetic counseling were actually referred (Wong et al. 2008) and only 30% of Dutch patients with colon cancer at a young age visited a genetics department (Overbeek et al. 2008). This should be a cause for concern given the consequences for at least the part of such patients (and their relatives) which are eligible for genetic counseling and are willing to be referred, but are unaware of this possibility themselves.

Our study included only a low number of immigrants, like previous studies in the UK and the USA (Wonderling et al. 2001; Armstrong et al. 2003). We found that significantly fewer immigrants were seen for cancer genetic counseling than would be expected from data on the general population. Next to possible confounding factors like lower socioeconomic status (Culver et al. 2001; Chin et al. 2005), low level of acculturation (Heck et al. 2008) and traditional beliefs (Barlow-Stewart et al. 2006), the low number of immigrants can partly be explained by the lower incidence of cancer and cancer mortality rates in different countries of origin (Turkey, Morocco, Surinam, Netherlands Antilles and Aruba) when compared to the Netherlands (Arnold et al. 2011; Stirbu et al. 2006; Visser et al. 2004). However, since specific approaches to immigrant populations improve their access to genetic counseling, as shown for the enrolment of African-American families in a genetic research project in the USA (Spruill 2010), we still recommend future studies to look carefully at the reasons why immigrants are not referred for counseling.

There are more highly educated counselees in our study than in the general population. Albada et al. has compared the UK and the Netherlands and found similar results on the educational background of Dutch counselees. They also found that, in the UK, less well-educated counselees were not underrepresented in breast cancer genetic counseling (Albada et al. 2011b). A mildly confounding factor in our study could be that the percentage of highly educated inhabitants in our service area is slightly greater than in the general Dutch population (Statistics Netherlands 2003), which might explain part of our results. The interaction between people undertaking cancer genetic counseling and their educational level is shown to be very complex: we found no linear association with educational level. There were less counselees with a low or intermediate-2 level of education, while the number of intermediate-1 level of education does not differ from the general population. It would be interesting to determine more detailed characteristics of these groups to find clues to a possible explanation. For example, are there any differences in the counselees’ profession or type of work, in their predicted cancer risk, or cancer worry, between better and less well-educated counselees, or between counselees seen in the different clinical settings? Also, reasons for declining referral for cancer genetic counseling can give more insight in the complexity of the referral process. For example, it has been reported that counselees declining referral are more anxious to hear more about their own risk and that of family members of getting cancer than counselees who accept referral (Geer et al. 2001). Also, not wishing, or not be able to contact family members for specific information about their cancer diagnosis (Appleby-Tagoe et al. 2011) might result in declining referral. More insight into all of these factors should be obtained in future studies in order to improve the access to cancer genetic counseling.

An interesting finding in our study was the association of clinical setting with who took the initiative for referral. Counselees seen in community hospitals were less likely to have taken the initiative themselves. There was also a trend for counselees with a personal history of cancer to be referred by their physician more often, which might explain part of the effect seen, given that more counselees are seen with a personal history of cancer in community hospitals, who might feel more dependent on their physician. Non-affected counselees who are self-referred might be less familiar with the possibility of genetic counseling in a community hospital.

Other features, in addition to counselee characteristics, might play a role. For example, if counselees are unaware of the possibility of undertaking cancer genetic counseling close to home and the distance is a barrier, they are less likely to take the initiative to request a referral. Differences in physicians’ characteristics are also important in the referral process and may vary between types of clinic. Unfortunately, we do not have data on this subject. Also, our numbers are too low to compare demographic characteristics of counselees between different community hospitals. Theoretically, how physicians and their patients communicate might differ between clinics, which could influence the referral process. It would therefore be interesting to study the interaction between (potential) counselees and their physician and other aspects of communication about cancer genetic counseling and the referral process. Thus, characteristics of the physician and counselee, e.g. health literacy and affluence, could be studied. Observing series of consecutive consultations would also have an important advantage since making decisions in cancer genetic counseling occurs over a period of time. This could for instance be done by videotaping or audiotaping consultations of patients possibly fulfilling criteria for genetic counseling (Pieterse et al. 2007; Albada et al. 2011a).