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

Authors

  • E. van Riel Department of Medical Genetics, University Medical Centre Utrecht, Utrecht,
  • A.J. Hubers Department of Medical Genetics, University Medical Centre Utrecht, Utrecht
  • A.J. Witkamp Department of Surgery, University Medical Centre Utrecht, Utrecht
  • Sandra van Dulmen
  • M.G.E.M. Ausems Department of Medical Genetics, University Medical Centre Utrecht, Utrecht

DOI:

https://doi.org/10.5750/ijpcm.v3i1.384

Keywords:

Age, breast cancer, diagnosis, genetic counselling, initiative, referral, relatives

Abstract

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.

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 

References

Brown, K. L., Hutchison, R., Zinberg, R. E., McGovern, M. M. (2005). Referral and experience with genetic testing among women with early onset breast cancer. Genetic Testing, 9, 301-305.

Escher, M. ,Sappino, A. P. (2000). Primary care physicians' knowledge and attitudes towards genetic testing for breast-ovarian cancer predisposition. Annuals of Oncology, 11, 1131-1135.

Pichert, G., Dietrich, D., Moosmann, P., Zwahlen, M., Stahel, R. A., Sappino, A. P. (2003). Swiss primary care physicians' knowledge, attitudes and perception towards genetic testing for hereditary breast cancer. Familial Cancer, 2, 153-158.

Van Riel, E., Wárlám-Rodenhuis, C. C., Verhoef, S., Rutgers, E. J. ,Ausems, M. G. (2010). BRCA testing of breast cancer patients: medical specialists' referral patterns, knowledge and attitudes to genetic testing. European Journal of Cancer Care (Engl), 19, 369-376.

Sussner, K. M., Jandorf, L. ,Valdimarsdottir, H. B. (2011). Educational needs about cancer family history and genetic counseling for cancer risk among frontline healthcare clinicians in New York City. Genetics in Medicine, 13, 785-793.

Quillin, J. M., Bodurtha, J. N., McClish, D. , Wilson, D. B. (2011). Genetic risk, perceived risk, and cancer worry in daughters of breast cancer patients. Journal of Genetic Counseling, 20, 157-164.

Trivers, K. F., Baldwin, L. M., Miller, J. W., Matthews, B., Andrilla, C. H., Lishner, D. M., Goff, B. A. (2011). Reported referral for genetic counseling or BRCA 1/2 testing among United States physicians: a vignette-based study. Cancer, 117, 5334-5343.

Cohn, W. F., Ropka, M. E., Jones, S. M., Miesfeldt, S. (2003). Information needs about hereditary breast cancer among women with early-onset breast cancer. Cancer Detection and Prevention, 27, 345-352.

MacDonald, D. J., Sarna, L., Uman, G. C., Grant, M., Weitzel, J. N. (2005). Health beliefs of women with and without breast cancer seeking genetic cancer risk assessment. Cancer Nursing, 28, 372-379; quiz 380-371.

Van Asperen, C. J., Van Dijk, S., Zoeteweij, M. W., Timmermans, D. R., De Bock, G. H., Meijers-Heijboer, E. J., Niermeijer, M. F., Breuning, M. H., Kievit, J. ,Otten, W. (2002). What do women really want to know? Motives for attending familial breast cancer clinics. Journal of Medical Genetics, 39, 410-414.

Rantala, J., Platten, U., Lindgren, G., Nilsson, B., Arver, B., Lindblom, A., Brandberg, Y. (2009). Risk perception after genetic counseling in patients with increased risk of cancer. Hereditary Cancer in Clinical Practice, 7, 15.

Albada, A., Ausems, M. G., Otten, R., Bensing, J. M., van Dulmen, S. (2011a). Use and evaluation of an individually tailored website for counselees prior to breast cancer genetic counseling. Journal of Cancer Education, 26, 670-681.

Albada, A., Werrett, J., Van Dulmen, S., Bensing, J. M., Chapman, C., Ausems, M. G., Metcalfe, A. (2011b). Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands? Journal of Community Genetics, 2, 233-247.

Ardern-Jones, A., Kenen, R., Eeles, R. (2005). Too much, too soon? Patients and health professionals' views concerning the impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. European Journal of Cancer Care (Engl), 14, 272-281.

Van Riel, E., van Dulmen, S., Ausems, M. G. (2012). Who is being referred to cancer genetic counseling? Characteristics of counselees and their referral. Journal of Community Genetics, 4, 265-274.

Statistics Netherlands. (2008). Population; sexe, age, nationality. Available: http://statline.cbs.nl/StatWeb/publication/?DM=SLNL&PA=37325&D1=a&D2=0&D3=0&D4=0&D5=0-4,137,152,215,232&D6=0,4,9,(l-1)-l&HDR=G2,G1,G3,T&STB=G4,G5&VW=T [Accessed Accessed April 2011].

CBO (Dutch Institute for Healthcare Improvement). (2008). Guideline Breast Cancer (Richtlijn Mammacarcinoom). Available: http://www.cbo.nl/Downloads/328/rl_mamma_08.pdf.

O'Neill, S. M., Peters, J. A., Vogel, V. G., Feingold, E., Rubinstein, W. S. (2006). Referral to cancer genetic counseling: are there stages of readiness? American Journal of Medical Genetics. Part C, Seminar in Medical Genetics, 142C, 221-231.

Schlich-Bakker, K. J., ten Kroode, H. F., Warlam-Rodenhuis, C. C., van den Bout, J., Ausems, M. G. (2007). Barriers to participating in genetic counseling and BRCA testing during primary treatment for breast cancer. Genetics in Medicine, 9, 766-777.

Vadaparampil, S. T., Quinn, G. P., Miree, C. A., Brzosowicz, J., Carter, B., Laronga, C. (2009). Recall of and reactions to a surgeon referral letter for BRCA genetic counseling among high-risk breast cancer patients. Annals of Surgical Oncology, 16, 1973-1981.

Fraser, L., Bramald, S., Chapman, C., Chu, C., Cornelius, V., Douglas, F., Lucassen, A., Nehammer, A., Sutton, S., Trivella, M., Hodgson, S. (2003). What motivates interest in attending a familial cancer genetics clinic? Familial Cancer, 2, 159-168.

Brain, K., Gray, J., Norman, P., Parsons, E., Clarke, A., Rogers, C., Mansel, R., Harper, P. (2000). Why do women attend familial breast cancer clinics? Journal of Medical Genetics, 37, 197-202.

Christianson, C. A., Powell, K. P., Hahn, S. E., Blanton, S. H., Bogacik, J., Henrich, V. C. (2012). The use of a family history risk assessment tool within a community health care system: Views of primary care providers. Journal of Genetic Counseling, 21, 652-661

Julian-Reynier, C., Eisinger, F., Chabal, F., Aurran, Y., Bignon, Y. J., Nogues, C., Machelard, M., Maugard, C., Vennin, P., Sobol, H. (1998). Time elapsing from cancer diagnosis and anxiety in women attending cancer genetic clinics. Oncology Reports, 5, 885-888.

Hopwood, P. 2000. Breast cancer risk perception: what do we know and understand? Breast Cancer Research, 2, 387-391.

Armstrong, K., Weber, B., Stopfer, J., Calzone, K., Putt, M., Coyne, J., Schwartz, J. S. (2003). Early use of clinical BRCA1/2 testing: associations with race and breast cancer risk. American Journal of Medical Genetics A, 117A, 154-160.

Schlich-Bakker, K. J., Ausems, M. G. E. M., Schipper, M., ten Kroode, H. F. J., Wárlám-Rodenhuis, C. C., van den Bout, J. (2008). BRCA1/2 mutation testing in breast cancer patients: a prospective study of the long-term psychological impact of approach during adjuvant radiotherapy. Breast Cancer Research and Treatment, 109, 507-514.

Bluman, L. G., Rimer, B. K., Berry, D. A., Borstelmann, N., Iglehart, J. D., Regan, K., Schildkraut, J., Winer, E. P. (1999). Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2. Journal of Clinical Oncology, 17, 1040-1046.

Published

2013-07-30

Issue

Section

Regular Articles