Familial Cancer

, 8:403 | Cite as

Cancer genetic predisposition: information needs of patients irrespective of risk level

  • Alison MetcalfeEmail author
  • Julie Werrett
  • Lucy Burgess
  • Cyril Chapman
  • Collette Clifford


Increased insight into the information needs of people about cancer genetic predisposition could allow materials to be developed to improve decision-making for those at high risk, whilst those at lower risk could have their anxiety reduced without the need for referral to genetics services. This study aimed to identify information needs of patients concerned about a genetic predisposition to cancer, and explore how this varied according to risk perception, cancer worry, personal motivation and demographics. Stage 1 used semi-structured telephone interviews pre and post participants’ genetic risk assessment. The findings informed stage two, a structured questionnaire survey of 1,112 patients, pre and post their genetic risk assessment. Participants were stratified by risk level and included those concerned about an inherited predisposition to breast, ovarian or colorectal cancer. About 512 (46%) responded with equal proportions of responders and non-responders across the risk categories. Findings indicated that irrespective of a person’s actual or perceived level of risk, cancer worry, demographic background or personal motivation; priorities in the type of information required were similar. Greatest emphasis focused on information provision about how risk was assessed. Least important was acquiring an understanding about genes and inheritance patterns. Most participants reported difficulties accessing or finding information. Peoples’ information needs are consistent irrespective of their risk level and therefore generalised information packages could be developed for anyone requesting cancer genetic risk assessment. Better information is likely to assist patients’ understanding and ultimately increase concordance with recommended screening and preventative measures.


Familial cancer Genetic counselling Genetic predisposition Information Patient education 



Patients and health professionals of the West Midlands Regional Genetics Unit who participated in this study. The advice and support of our steering group including Anna Aldred (nee Lane) from the Genetics Interest Group). Special thanks to Deb Onions and her colleagues who provided the administrative support for the study and Gill Plumridge for help with data inputting. We would also wish to acknowledge and thank the BUPA Foundation for funding this study.


  1. 1.
    Claus E, Risch N, Thompson W (1991) Genetic analysis of breast cancer in the cancer and steroid study. Am J Med Genet 48:232–242Google Scholar
  2. 2.
    Dunlop M, Farrington S, Carothers A et al (1997) Cancer risk associated with germline DNA mismatch repair gene mutations. Hum Mol Genet 6:105–110. doi: 10.1093/hmg/6.1.105 CrossRefPubMedGoogle Scholar
  3. 3.
    Hampel H, Sweet K, Westman JA et al (2004) Referral for cancer genetics consultation: a review and compiliation of risk assessment criteria. J Med Genet 41:81–91. doi: 10.1136/jmg.2003.010918 CrossRefPubMedGoogle Scholar
  4. 4.
    Collins V, Halliday J et al (2000) Assessment of education and counselling offered by a familial colorectal cancer clinic. Clin Genet 57:48–55. doi: 10.1034/j.1399-0004.2000.570107.x CrossRefPubMedGoogle Scholar
  5. 5.
    Hallowell N, Murton F et al (1997) Women’s needs for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview and observational study. BMJ 314:281PubMedGoogle Scholar
  6. 6.
    Chalmers KI, Luker KA (2001) Information and support needs of women with primary relatives with breast cancer. Development of the information and support needs questionnaire. J Adv Nurs 35(4):497–507. doi: 10.1046/j.1365-2648.2001.01866.x CrossRefPubMedGoogle Scholar
  7. 7.
    Van Asperen CJ, van Dijk S, Zoeteweij MW et al (2002) What do women really want to know? Motives for attending familial breast cancer clinics. J Med Genet 39:410–414. doi: 10.1136/jmg.39.6.410 CrossRefPubMedGoogle Scholar
  8. 8.
    Hopwood P, Wonderling D, Watson M et al (2004) A randomised comparison of UK genetic risk counseling services for familial cancer: psychosocial outcomes. Br J Cancer 91:884–892PubMedGoogle Scholar
  9. 9.
    Marteau T, Weinman J (2006) Self-regulation and the behavioural response to DNA risk information: a theoretical analysis and framework for future research. Soc Sci Med 6(6):1360–1368. doi: 10.1016/j.socscimed.2005.08.005 CrossRefGoogle Scholar
  10. 10.
    Holloway S, Porteous M, Cetnarskyj R et al (2005) Referrals of patients to colorectal cancer genetics services in south-east Scotland. Fam Cancer 4(2):151–161. doi: 10.1007/s10689-004-4488-y CrossRefPubMedGoogle Scholar
  11. 11.
    Nordin K, Liden A, Hansson M, Rosenquist R, Berglund G (2002) Coping style, psychological distress, risk perception and satisfaction in subjects attending genetic counselling for hereditary cancer. J Med Genet 39(43):689–694CrossRefPubMedGoogle Scholar
  12. 12.
    Stadler M, Mulvihill J (1998) Cancer risk assessment and genetic counselling in an academic medical centre: consultants’ satisfaction, knowledge and behaviour in the first year. J Genet Couns 7(3):279–297CrossRefGoogle Scholar
  13. 13.
    Silverman D (2001) Interpreting qualitative data. Methods for analysing talk, text and interaction. Sage Publications, LondonGoogle Scholar
  14. 14.
    Werrett JA, Helm RH, Carnwell R (2001) The primary and secondary care interface: the educational needs of nursing staff for the provision of seamless care. J Adv Nurs 34(5):629–638. doi: 10.1046/j.1365-2648.2001.01792.x CrossRefPubMedGoogle Scholar
  15. 15.
    Glanz K, Grove J, Lerman C, Gotay C, Le Marchand L (1999) Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiol Biomarkers Prev 8:329–336PubMedGoogle Scholar
  16. 16.
    Lwanga SK, Lemeshow S (1991) Sample size determination in health studies. World Health Organisation, GenevaGoogle Scholar
  17. 17.
    Altman D (1991) Practical statistics for medical research. Chapman & Hall, LondonGoogle Scholar
  18. 18.
    Metcalfe A, Werrett J, Burgess L, Clifford C (2007) Psychosocial impact of the lack of information given at referral about familial risk for cancer. Psychooncology 16(5):458–465. doi: 10.1002/pon.1081 CrossRefPubMedGoogle Scholar
  19. 19.
    Unkelbach RC, Fiedler K, Bayer M, Stegmüller M, Danner D (2008) Why positive information is processed faster: the density hypothesis. J Pers Soc Psychol 95(1):36–49. doi: 10.1037/0022-3514.95.1.36 CrossRefPubMedGoogle Scholar
  20. 20.
    Slovic P, Finucane ML, Peters E, Macgregor DG (2004) Risk as analysis and risk as feelings: some thoughts about affect, reason, risk and rationality. Risk Anal 24(2):311–322. doi: 10.1111/j.0272-4332.2004.00433.x CrossRefPubMedGoogle Scholar
  21. 21.
    Sivell S, Iredale R, Gray J, Coles B (2007) Cancer genetic risk assessment for individuals at risk of familial breast cancer. Cochrane Database Syst Rev 18(2):CD003721Google Scholar
  22. 22.
    Armitage CJ, Norman P, Conner M (2002) Can the theory of planned behaviour mediate the effects of age, gender and multidimensional health locus of control? Br J Health Psychol 7:299–316. doi: 10.1348/135910702760213698 CrossRefPubMedGoogle Scholar
  23. 23.
    Ross CE, Mirowsky J (2002) Age and the gender gap in the sense of personal control. Soc Psychol Q 65(2):125–145. doi: 10.2307/3090097 CrossRefGoogle Scholar
  24. 24.
    Pieterse AH, Ausems MG, Van Dulmen AM, Beemer FA, Bensing JM (2005) Initial cancer genetic counseling consultation: change in counselees’ cognitions and anxiety, and association with addressing their needs and preferences. Am J Med Genet A 137:27–35. doi: 10.1002/ajmg.a.30839 PubMedGoogle Scholar
  25. 25.
    Pieterse AH, Van Dulmen AM, Ausems MGEM, Beemer FA, Bensing JM (2005) Communication in cancer genetic counselling: does it reflect counselees’ previsit needs and preferences? Br J Cancer 92:1671–1678. doi: 10.1038/sj.bjc.6602570 CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Alison Metcalfe
    • 1
    Email author
  • Julie Werrett
    • 1
  • Lucy Burgess
    • 2
  • Cyril Chapman
    • 2
  • Collette Clifford
    • 1
  1. 1.School of Health & Population Science, College of Medicine & DentistryUniversity of BirminghamEdgbaston, BirminghamUK
  2. 2.West Midlands Regional Genetics UnitBirmingham Women Hospital NHS TrustEdgbaston, BirminghamUK

Personalised recommendations