Cancer Genetics Service Provision: A Comparison of Seven European Centres

Abstract

Objective: To conduct a survey in seven European cancer genetics centres to compare service provision, organisation and practices for familial breast and colon cancer consultations and testing. Information was obtained on aspects of services both nationally and locally. Methods: A detailed survey questionnaire was adapted collaboratively to obtain the required information. Initial survey data were collected within each centre and interim results were discussed at two European Workshops. Where differences in practice existed, details were clarified to ensure accuracy and adequacy of information. Participating centres were Haifa (Israel), Hannover (Germany), Leiden (The Netherlands), Leuven (Belgium), Manchester (UK), Marseille (France) and Milan (Italy), representing countries with populations ranging from 6.5 to 80 million. Results: The European countries diverged in regard to the number of cancer genetics centres nationally (from 8 in Belgium to 37 in France), and the average population served by each centre (from 0.59 million in Israel to 3.32 million in Italy). All centres offered free care at the point of access, but referral to specialist care varied according to national health care provision. At a centre level, staff roles varied due to differences in training and health care provision. The annual number of counsellees seen in each participating centre ranged from 200 to over 1,700. Access to breast surveillance or bowel screening varied between countries, again reflecting differences in medical care pathways. These countries converged in regard to the wide availability of professional bodies and published guidelines promoting aspects of service provision. Similarities between centres included provision of a multidisciplinary team, with access to psychological support, albeit with varying degrees of integration. All services were dominated (70–90%) by referrals from families with an increased risk of breast cancer despite wide variation in referral patterns. Collection of pedigree data and risk assessment strategies were broadly similar, and centres used comparable genetic testing protocols. Average consultation times ranged between 45 and 90 min. All centres had access to a laboratory offering DNA testing for breast and bowel cancer-predisposing genes, although testing rates varied, reflecting the stage of service development and the type of population. Israel offered the highest number of genetic tests for breast cancer susceptibility because of the existence of specific founder mutations, in part explaining why the cancer genetics service in Haifa differed most from the other six. Conclusion: Despite considerable differences in service organisation, there were broad similarities in the provision of cancer genetic services in the centres surveyed.

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

“…Similar percentages of breast cancer-affected probands were reported in other Dutch studies (Van Asperen et al 2002;Van Dijk et al 2004) and a European comparative study of cancer genetic counselling also found that UK (cancer genetics centre Manchester) had few (10%) affected counselees, compared to 33% in the NL (genetics centre Leiden) (Hopwood et al 2003). Most Dutch affected counselees were referred by their consultant; most unaffected counselees were referred by their GP.…”

“…Breast cancer genetic counselling has been widely introduced in many countries, with differences in genetic service provision which are partly due to major international differences in health care systems (Meiser et al 2006;Hopwood et al 2003). There is often an assumption that countries can benefit from international research findings of psychosocial consequences of cancer genetic counselling.…”

Genetics in Health Care: An Overview of Current and Emerging Models

“…Collaborative models linking genetic specialists with other medical practitioners, cancer clinics with counselling services, or even community, secondary and tertiary care, have been proposed in Europe [74,75,76], USA [77] and Japan [78,79]. Multidisciplinary teams have been in place, either permanently or on demand, in 7 cancer genetics clinics of the UK, Netherlands, Belgium, France, Germany, Italy, and Israel [74] including gynaecologists, gastroenterologists, or surgeons, and, in some cases (UK, Belgium and Israel), psychologists and specialist oncology nurses.…”

Family History of Pancreatic Cancer in a High‐Risk Cancer Clinic: Implications for Risk Assessment

“…In total, 87 families were identified, representing 7.1% of the families enrolled in our database over an 11-year span. Because the majority of individuals presenting to high-risk cancer clinics in the USA and abroad are referred for evaluation for HBOS and/or BRCA1/2 genetic testing (Epplein et al 2005;Hopwood et al 2003), we also specifically examined the contribution that a family history of PC adds to the risk assessment of an HBOS proband.…”

“…Pancreatic cancer (PC), in contradistinction, is rare: 37,170 Americans were diagnosed with PC last year, and few will survive more than one year (Jemal et al 2007). Women referred for hereditary breast-ovarian syndrome (HBOS) and BRCA1/2 testing comprise the predominant population in high-risk cancer clinics (Epplein et al 2005;Hopwood et al 2003). While the compilation of family history of breast and ovarian cancer is crucial in an HBOS evaluation, the importance of a family history of PC to cancer risk assessment is less clear.…”