The initiator and timing of referral to breast cancer genetic counselling; an exploration of everyday person-centered practice

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E. van Riel
A.J. Hubers
A.J. Witkamp
Sandra van Dulmen
M.G.E.M. Ausems


Objective: The referral process for genetic counselling in breast cancer patients may be compromised by patient-related factors, like patient’s age, referral initiative or cancer history. This study aimed to characterize this referral process in daily clinical practice.Methods: During genetic counselling a checklist was filled in for each consecutive counselee affected with breast cancer assessing educational level, the initiator for referral and the ethnic background as reported by the counselee. Chi-square tests were used to assess associations between patient-related factors and initiator of referral and timing of genetic counselling.Results: Included were 96 consecutive breast cancer patients referred to cancer genetic counselling: 52% of them were referred on their own initiative versus 48% on their doctor’s initiative. There was no significant relationship between initiator of referral and time since diagnosis, age at time of diagnosis, number of first-degree female relatives and number of first degree relatives affected by any cancer.Discussion: Patients’ interest in genetic testing is not clearly related with time since diagnosis. Family history seems to play a role in the timing for referral.Conclusion: At one out of two breast cancer patients plays a major role in the referral for genetic counselling. However, we did not establish a relationship between initiative for referral and time since diagnosis.

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Author Biography

Sandra van Dulmen

A.M. (Sandra) studied clinical psychology. After graduation in 1997 (cum laude), she started working as a researcher in different fields of health care, first at the Department of Clinical Psychology, then from 1988-1995, at the Department of General Practice at the University of Nijmegen. She obtained her PhD degree in 1996 with the thesis titled “Exploring cognitions in irritable bowel syndrome; implications for the role of the doctor”. For her thesis she received the dissertation award from the Netherlands School of Primary Care Research (CaRe). From 1995 onwards she works at NIVEL (Netherlands institute for health services research), first as a researcher, since 1999 as the co-ordinator of the research program Communication in Healthcare. In 2001 she was co-founder and since then the secretary of EACH (European Association for Communication in Healthcare). She obtained numerous grants for her communication studies, varying from observational research in general practices and hospitals to intervention studies among medical students, specialists, nurses as well as among patients with minor ailments, type 1 or type 2 diabetes, IBS, or cancer. A core feature of her work is the (video)observation and analysis of the communication in the consulting room between a patient and a health care professional. She collaborates within several international research projects. Currently Sandra van Dulmen supervises seven PhD students. She has published around 50 national and 100 international papers in peer-reviewed journals. A selection of these include:Oerlemans S, Van Cranenburgh O, Herremans P-J, Spreeuwenberg P, Van Dulmen S. Intervening on cognitions and behaviour in irritable bowel syndrome: a feasibility trial using PDAs. J Psychosom Res 2011 (in press)Weert J van, Jansen J, Spreeuwenberg P, Dulmen S van, Bensing J. Effects of a Communication Skills Training to improve Communication with Older Cancer Patients: A Randomized controlled trial . Critical Reviews in Oncology/Hematology 2011 (in press)Noordman J, Verhaak P, I. van Beljouw I van, Dulmen S van. Discussing patient’s (un)healthy lifestyle in the consulting room: analysis of GP-patient consultations between 1975 and 2008. BMC Fam Pract 2010; 11(1): 87Dulmen S van, Groot J de, Koster D, Heiligers Ph. Why seek complementary medicine? An observational study in homeopathic, acupunctural and naturopathic medical practices. Journal of Complementary and Integrative Medicine 2010; 7: 20Albada A, Dulmen S van, Otten R, Bensing JM, Ausems MGEM. The development of E-info geneca: a computer-tailored intervention prior to breast cancer genetic counselling. J Gen Couns 2009; 18: 326-338Morren M, Dulmen S van, Ouwerkerk J,  Bensing J. Compliance with momentary pain measurement using electronic diaries: A systematic review. Eur J Pain 2009; 13: 354-365Dulmen S van, Tromp F, Grosfeld F, Cate Th J ten, Bensing JM. The impact of assessing simulated bad news consultations on medical students’ stress response and communication performance. Psychoneuroendocrinology 2007;  32: 943–950Zwaanswijk M, Tates K, Dulmen S van, Hoogerbrugge PM, Kamps W, Bensing J. Young patients’, parents’, and survivors’ communication preferences in paediatric oncology: Using online focus groups to develop a structured questionnaire. BMC Pediatrics 2007; 7: 35Dijk L van, Heerdink ER, Somai D, Dulmen AM van, Ridder DT de, Sluijs EM, Griens AMGF, Bensing JM. Patient risk profiles and practice variation in nonadherence to antidepressants, antihypertensives and oral hypoglycemics. BMC Health Serv Res. 2007 Apr 10;7(1):51Dulmen S van, Sluijs E, Dijk L van, Ridder D de, Heerdink R, Bensing J. Patient Adherence to medical treatment: a review of reviews. BMC Health Services Research. BMC Health Services Research 2007, 7:55 


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