Cancer genetics service provision: a comparison of seven European centres.

2.50
Hdl Handle:
http://hdl.handle.net/10541/78904
Title:
Cancer genetics service provision: a comparison of seven European centres.
Authors:
Hopwood, Penelope; Van Asperen, C J; Borreani, G; Bourret, P; Decruyenaere, Marleen; Dishon, S; Eisinger, F; Evans, D Gareth R; Evers-Kiebooms, G; Gangeri, L; Hagoel, Lea; Legius, E; Nippert, I; Rennert, G; Schlegelberger, Brigitte; Sevilla, C; Sobol, H; Tibben, A; Welkenhuysen, M; Julian-Reynier, Claire
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.
Affiliation:
Psycho-Oncology, Christie Hospital NHS Trust, Manchester, UK. penny.hopwood@christie-tr.nwest.nhs.uk
Citation:
Cancer genetics service provision: a comparison of seven European centres. 2003, 6 (4):192-205 Community Genet
Journal:
Community Genetics
Issue Date:
2003
URI:
http://hdl.handle.net/10541/78904
DOI:
10.1159/000079381
PubMed ID:
15331865
Type:
Article
Language:
en
ISSN:
1422-2795
Appears in Collections:
All Christie Publications

Full metadata record

DC FieldValue Language
dc.contributor.authorHopwood, Penelope-
dc.contributor.authorVan Asperen, C J-
dc.contributor.authorBorreani, G-
dc.contributor.authorBourret, P-
dc.contributor.authorDecruyenaere, Marleen-
dc.contributor.authorDishon, S-
dc.contributor.authorEisinger, F-
dc.contributor.authorEvans, D Gareth R-
dc.contributor.authorEvers-Kiebooms, G-
dc.contributor.authorGangeri, L-
dc.contributor.authorHagoel, Lea-
dc.contributor.authorLegius, E-
dc.contributor.authorNippert, I-
dc.contributor.authorRennert, G-
dc.contributor.authorSchlegelberger, Brigitte-
dc.contributor.authorSevilla, C-
dc.contributor.authorSobol, H-
dc.contributor.authorTibben, A-
dc.contributor.authorWelkenhuysen, M-
dc.contributor.authorJulian-Reynier, Claire-
dc.date.accessioned2009-08-27T14:11:15Z-
dc.date.available2009-08-27T14:11:15Z-
dc.date.issued2003-
dc.identifier.citationCancer genetics service provision: a comparison of seven European centres. 2003, 6 (4):192-205 Community Geneten
dc.identifier.issn1422-2795-
dc.identifier.pmid15331865-
dc.identifier.doi10.1159/000079381-
dc.identifier.urihttp://hdl.handle.net/10541/78904-
dc.description.abstractOBJECTIVE: 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.en
dc.language.isoenen
dc.subjectBreast Canceren
dc.subjectColorectal Canceren
dc.subject.meshBreast Neoplasms-
dc.subject.meshColorectal Neoplasms-
dc.subject.meshData Collection-
dc.subject.meshEurope-
dc.subject.meshGenetic Counseling-
dc.subject.meshGenetic Predisposition to Disease-
dc.subject.meshGenetic Screening-
dc.subject.meshHealth Facilities-
dc.subject.meshHumans-
dc.subject.meshIsrael-
dc.subject.meshMolecular Diagnostic Techniques-
dc.subject.meshReferral and Consultation-
dc.titleCancer genetics service provision: a comparison of seven European centres.en
dc.typeArticleen
dc.contributor.departmentPsycho-Oncology, Christie Hospital NHS Trust, Manchester, UK. penny.hopwood@christie-tr.nwest.nhs.uken
dc.identifier.journalCommunity Geneticsen

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