Breast Cancer Research and Treatment

, Volume 156, Issue 2, pp 289–299 | Cite as

Adherence to the breast cancer surveillance program for women at risk for familial breast and ovarian cancer versus overscreening: a monocenter study in Germany

  • Lisa Vetter
  • Monika Keller
  • Thomas Bruckner
  • Michael Golatta
  • Sabine Eismann
  • Christina Evers
  • Nicola Dikow
  • Christof Sohn
  • Jörg Heil
  • Sarah SchottEmail author
Clinical Trial


Breast cancer (BC) is the leading cancer among women worldwide and in 5–10 % of cases is of hereditary origin, mainly due to BRCA1/2 mutations. Therefore, the German Consortium for Familial Breast and Ovarian Cancer (HBOC) with its 15 specialized academic centers offers families at high risk for familial/hereditary cancer a multimodal breast cancer surveillance program (MBCS) with regular breast MRI, mammography, ultrasound, and palpation. So far, we know a lot about the psychological effects of genetic testing, but we know little about risk-correlated adherence to MBCS or prophylactic surgery over time. The aim of this study was to investigate counselees’ adherence to recommendations for MBCS in order to adjust the care supply and define predictors for incompliance. All counselees, who attended HBOC consultation at the University Hospital Heidelberg between July 01, 2009 and July 01, 2011 were eligible to participate. A tripartite questionnaire containing sociodemographic information, psychological parameters, behavioral questions, and medical data collection from the German consortium were used. A high participation rate was achieved among the study population, with 72 % returning the questionnaire. This study showed a rate of 59 % of full-adherers to the MBCS. Significant predictors for partial or full adherence were having children (p = 0.0221), younger daughters (p = 0.01795), a higher awareness of the topic HBOC (p = 0.01795, p < 0.0001), a higher perceived breast cancer risk (p < 0.0001), and worries (p = 0.0008)/impairment (p = 0.0257) by it. Although the current data suggest a good adherence of MBCS, prospective studies are needed to understand counselees’ needs to further improve surveillance programs and adherence to them. Adherence to the breast cancer surveillance program for women at risk for familial breast and ovarian cancer versus overscreening—a monocenter study in Germany.


BRCA mutation Adherence Breast cancer Compliance Cancer surveillance program 



This study was supported by a research grant of the German Society of psychosomatic in gynecology (DGPFG e.V.). The authors thank the NCT Heidelberg for the survival inquiry.

Compliance with ethical standards

Conflict of interest

There is no conflict of interest by any author.

Ethical Standards

This study was approved by the local ethical committee (S-528/2013) and performed in accordance with the Declaration of Helsinki.

Supplementary material

10549_2016_3748_MOESM1_ESM.docx (207 kb)
Supplementary material 1 (DOCX 206 kb)


  1. 1.
    Goldberg JI, Borgen PI (2006) Breast cancer susceptibility testing: past, present and future. Expert Rev Anticancer Ther 6(8):1205–1214CrossRefPubMedGoogle Scholar
  2. 2.
    Robert Koch Institut (2013) Krebs in Deutschland 2009/2010. Deutschen Nationalbibliografie. Accessed 16 Aug 2015
  3. 3.
    Mavaddat N, Peock S, Frost D, Ellis S, Platte R, Fineberg E, Evans DG, Izatt L, Eeles RA, Adlard J, Davidson R, Eccles D, Cole T, Cook J, Brewer C, Tischkowitz M, Douglas F, Hodgson S, Walker L, Porteous ME, Morrison PJ, Side LE, Kennedy MJ, Houghton C, Donaldson A, Rogers MT, Dorkins H, Miedzybrodzka Z, Gregory H, Eason J, Barwell J, McCann E, Murray A, Antoniou AC, Easton DF (2013) Cancer risks for BRCA1 and BRCA2 mutation carriers: results from prospective analysis of EMBRACE. J Natl Cancer Inst 105(1460–2105):812–822CrossRefPubMedGoogle Scholar
  4. 4.
    Hall JM, Lee MK, Newman B, Morrow JE, Anderson LA, Huey B, King MC (1990) Linkage of early-onset familial breast cancer to chromosome 17q21. Science 250(0036–8075):1684–1689CrossRefPubMedGoogle Scholar
  5. 5.
    DeutschesKonsortium (2015) Das Risiko als Chance nutzen. Konsortium Familiärer Brust- und Eierstockkrebs. Accessed 17 Aug 2015
  6. 6.
    Wooster R, Neuhausen SL, Mangion J, Quirk Y, Ford D, Collins N, Nguyen K, Seal S, Tran T, Averill D (1994) Localization of a breast cancer susceptibility gene, BRCA2, to chromosome 13q12-13. Science 265(0036–8075):2088–2090CrossRefPubMedGoogle Scholar
  7. 7.
    Gadzicki D, Evans DG, Harris H, Julian-Reynier C, Nippert I, Schmidtke J, Tibben A, van Asperen CJ, Schlegelberger B (2011) Genetic testing for familial/hereditary breast cancer—comparison of guidelines and recommendations from the UK, France, the Netherlands and Germany. J Commun Genet 2(1868–310X):53–69CrossRefGoogle Scholar
  8. 8.
    Fallenberg EM, Bick U, Schreer I (2014) Strukturiertes Mammakarzinom-Früherkennungsprogramm. Der Gynäkologe 47(10):746–752CrossRefGoogle Scholar
  9. 9.
    Ludwig S (2013) Fünfzehn spezialisierte Zentren für Betroffene. Mamma Mia! Das Brustkrebsmagazin 2:16–17Google Scholar
  10. 10.
    Vos J, Menko FH, Oosterwijk JC, van Asperen CJ, Stiggelbout AM, Tibben A (2013) Genetic counseling does not fulfill the counselees’ need for certainty in hereditary breast/ovarian cancer families: an explorative assessment. Psycho-oncology 22(5):1167–1176CrossRefPubMedGoogle Scholar
  11. 11.
    Lodder L, Frets PG, Trijsburg RW, Meijers-Heijboer EJ, Klijn JG, Duivenvoorden HJ, Tibben A, Wagner A, van der Meer CA, van den Ouweland AM, Niermeijer MF (2001) Psychological impact of receiving a BRCA1/BRCA2 test result. Am J Med Genet 98(1):15–24CrossRefPubMedGoogle Scholar
  12. 12.
    Di Prospero LS, Seminsky M, Honeyford J, Doan B, Franssen E, Meschino W, Chart P, Warner E (2001) Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: findings from a focus group and a needs—assessment survey. CMAJ Can Med Assoc Journal 164(7):1005–1009Google Scholar
  13. 13.
    den Heijer M, Seynaeve C, Vanheusden K, Timman R, Duivenvoorden HJ, Tilanus-Linthorst M, Menke-Pluijmers MB, Tibben A (2013) Long-term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance: a risk profile. Psycho-oncology 22(3):598–604. doi: 10.1002/pon.3039 CrossRefGoogle Scholar
  14. 14.
    Engel C, Zachariae S, Fischer C (2015) Familiärer Brustkrebs—empirische Erkrankungsrisiken und Risikoberechnungsmodelle. Med Gen 2:217–222Google Scholar
  15. 15.
    Meindl A, Ditsch N, Kast K, Rhiem K, Schmutzler RK (2011) Familiäres Mamma- und Ovarialkarzinom: Neue Gene, neue Therapien, neue Konzepte. Deutsches Ärzteblatt 108(19):323–330Google Scholar
  16. 16.
    Rhiem KM, Pfeifer K (2014) Prophylaktische Operationen. Der Gynäkologe 47(10):741–745CrossRefGoogle Scholar
  17. 17.
    Keller M (2005) Psychosoziale Aspekte bei familiärem Darmkrebs. Universität Heidelberg, Heidelberg, Medizinische HabilitationsschriftGoogle Scholar
  18. 18.
    Keller M, Jost R, Haunstetter CM, Sattel H, Schroeter C, Bertsch U, Cremer F, Kienle P, Tariverdian M, Kloor M, Gebert J, Brechtel A (2008) Psychosocial outcome following genetic risk counselling for familial colorectal cancer. A comparison of affected patients and family members. Clin Genet 74(5):414–424CrossRefPubMedGoogle Scholar
  19. 19.
    Keller M, Sommerfeldt S, Fischer C, Knight L, Riesbeck M, Lowe B, Herfarth C, Lehnert T (2004) Recognition of distress and psychiatric morbidity in cancer patients: a multi-method approach. Ann Oncol 15(8):1243–1249. doi: 10.1093/annonc/mdh318 CrossRefPubMedGoogle Scholar
  20. 20.
    Filipp SH, Ferring D, Freudenberg E, Klauer T (1988) Affective motivational correlates of strategies of coping with illness—initial results of a longitudinal study on cancer patients. Psychother Psychosom Med Psychol 38(1):37–42PubMedGoogle Scholar
  21. 21.
    Horowitz M, Wilner N, Alvarez W (1979) Impact of Event Scale: a measure of subjective stress. Psychosom Med 41(3):209–218CrossRefPubMedGoogle Scholar
  22. 22.
    Lerman C, Trock B, Rimer BK, Boyce A, Jepson C, Engstrom PF (1991) Psychological and behavioral implications of abnormal mammograms. Ann Intern Med 114(8):657–661CrossRefPubMedGoogle Scholar
  23. 23.
    Codori AM, Petersen GM, Miglioretti DL, Larkin EK, Bushey MT, Young C, Brensinger JD, Johnson K, Bacon JA, Booker SV (1999) Attitudes toward colon cancer gene testing: factors predicting test uptake. Cancer Epidemiol Biomark Prev 8(4 Pt 2):345–351Google Scholar
  24. 24.
    Vernon SW, Gritz ER, Peterson SK, Perz CA, Marani S, Amos CI, Baile WF (1999) Intention to learn results of genetic testing for hereditary colon cancer. Cancer Epidemiol Biomark Prev 8(4 Pt 2):353–360Google Scholar
  25. 25.
    Kash KM, Holland JC, Halper MS, Miller DG (1992) Psychological distress and surveillance behaviors of women with a family history of breast cancer. J Natl Cancer Inst 84(1):24–30CrossRefPubMedGoogle Scholar
  26. 26.
    Ware J Jr, Kosinski M, Keller SD (1996) A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 34(3):220–233CrossRefPubMedGoogle Scholar
  27. 27.
    Engel C, Enders U, Deutsche Krebshilfe, Institut für Medizinische Infoamtik Statistik und Epidemiologie Universität Leipzig (2011) Versorgungsoptimierung für Frauen mit einer erblichen Belastung für Brust- und Eierstockkrebs durch ergebnisorientierte Evaluation der präventiven Maßnahmen - Dokumentationsbögen “BRCA2006”Google Scholar
  28. 28.
    Bundesministerium für Gesundheit (2014) Mammographie-Screening. Bundesministerium für Gesundheit. Accessed 16 Aug 2015
  29. 29.
    Almqvist EW, Brinkman RR, Wiggins S, Hayden MR (2003) Psychological consequences and predictors of adverse events in the first 5 years after predictive testing for Huntington’s disease. Clin Genet 64(0009–9163):300–309CrossRefPubMedGoogle Scholar
  30. 30.
    Marteau TM, Croyle RT (1998) The new genetics psychological responses to genetic testing. Br Med J 316(0959–8138):693–696CrossRefGoogle Scholar
  31. 31.
    Botkin JR, Smith KR, Croyle RT, Baty BJ, Wylie JE, Dutson D, Chan A, Hamann HA, Lerman C, McDonald J, Venne V, Ward JH, Lyon E (2003) Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing. Am J Med Genet 118A(1552–4825):201–209CrossRefPubMedGoogle Scholar
  32. 32.
    Bredart A, Kop JL, Depauw A, Caron O, Sultan S, Leblond D, Fajac A, Buecher B, Gauthier-Villars M, Nogues C, Flahault C, Stoppa-Lyonnet D, Dolbeault S (2013) Short-term psychological impact of the BRCA1/2 test result in women with breast cancer according to their perceived probability of genetic predisposition to cancer. Br J Cancer 108(1532–1827):1012–1020CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Morgan D, Sylvester H, Lucas FL, Miesfeldt S (2009) Cancer prevention and screening practices among women at risk for hereditary breast and ovarian cancer after genetic counseling in the community setting. Fam Cancer 8(1573–7292):277–287CrossRefPubMedGoogle Scholar
  34. 34.
    Halbert CH, Stopfer JE, McDonald J, Weathers B, Collier A, Troxel AB, Domchek S (2011) Long-term reactions to genetic testing for BRCA1 and BRCA2 mutations: does time heal women’s concerns? J Clin Oncol 29(1527–7755):4302–4306CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Campitelli MA, Chiarelli AM, Mirea L, Stewart L, Glendon G, Ritvo P, Andrulis IL, Knight JA (2011) Adherence to breast and ovarian cancer screening recommendations for female relatives from the Ontario site of the Breast Cancer Family Registry. Eur J Cancer Prev 20(1473–5709):492–500CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Frauenselbsthilfe nach Krebs e.V., Women’s Health Coalition e.V. (2012) Inanspruchnahme des qualitätsgesicherten Mammographie-Screenings—Follow-up Studie 2012. Accessed 08 Sep 2015
  37. 37.
    Naß-Griegoleit I, Schultz-Zehden B, Klusendick M, Diener J, Schulte H (2009) Studie belegt hohe Akzeptanz des Mammographie-Screenings bei Frauen. Frauenarzt 50:494–501Google Scholar
  38. 38.
    Royce TJ, Hendrix LH, Stokes WA, Allen IM, Chen RC (2014) Cancer screening rates in individuals with different life expectancies. J Am Med Assoc Intern Med 174(2168–6114):1558–1565Google Scholar
  39. 39.
    Katapodi MC, Lee KA, Facione NC, Dodd MJ (2004) Predictors of perceived breast cancer risk and the relation between perceived risk and breast cancer screening: a meta-analytic review. Prev Med 38(0091–7435):388–402CrossRefPubMedGoogle Scholar
  40. 40.
    Zhang LR, Chiarelli AM, Glendon G, Mirea L, Edwards S, Knight JA, Andrulis IL, Ritvo P (2011) Influence of perceived breast cancer risk on screening behaviors of female relatives from the Ontario site of the Breast Cancer Family Registry. Eur J Cancer Prev 20(1473–5709):255–262CrossRefPubMedPubMedCentralGoogle Scholar
  41. 41.
    Vyas A, Madhavan S, LeMasters T, Atkins E, Gainor S, Kennedy S, Kelly K, Vona-Davis L, Remick S (2012) Factors influencing adherence to mammography screening guidelines in Appalachian women participating in a mobile mammography program. J Commun Health 37(1573–3610):632–646CrossRefGoogle Scholar
  42. 42.
    Phillips KA, Kerlikowske K, Baker LC, Chang SW, Brown ML (1998) Factors associated with women’s adherence to mammography screening guidelines. Health Serv Res 33(0017–9124):29–53PubMedPubMedCentralGoogle Scholar
  43. 43.
    Loescher LJ, Lim KH, Leitner O, Ray J, Armstrong CM (2009) Cancer surveillance behaviors in women presenting for clinical BRCA genetic susceptibility testing. Oncol Nurs Forum 36(1538–0688):E57–E67CrossRefPubMedGoogle Scholar
  44. 44.
    Schneider KI, Schmidtke J (2013) Patient compliance based on genetic medicine: a literature review. Commun Genet 5(1868-310X):31–48Google Scholar
  45. 45.
    Antill YC, Reynolds J, Young MA, Kirk JA, Tucker KM, Bogtstra TL, Wong SS, Dudding TE, Di Iulio JL, Phillips KA (2006) Screening behavior in women at increased familial risk for breast cancer. Fam Cancer 5(1389–9600):359–368CrossRefPubMedGoogle Scholar
  46. 46.
    Tinley ST, Houfek J, Watson P, Wenzel L, Clark MB, Coughlin S, Lynch HT (2004) Screening adherence in BRCA1/2 families is associated with primary physicians’ behavior. Am J Med Genet 15(1552–4825):5–11CrossRefGoogle Scholar
  47. 47.
    O‘Neill SC, Mays D, Patenaude AF, Garber JE, DeMarco TA, Peshkin BN, Schneider KA, Tercyak KP (2015) Women’s concerns about the emotional impact of awareness of heritable breast cancer risk and its implications for their children. J Commun Genet 6:55–62CrossRefGoogle Scholar
  48. 48.
    Mays D, DeMarco TA, Luta G, Peshkin BN, Patenaude AF, Schneider KA, Garber JE, Tercyak KP (2014) Distress and the parenting dynamic among BRCA1/2 tested mothers and their partners. Health Psychol 33(1930–7810):765–773CrossRefPubMedPubMedCentralGoogle Scholar
  49. 49.
    De Leeuw JRJ, van Vliet MJ, Ausems MGEM (2008) Predictors of choosing life-long screening or prophylactic surgery in women at high and moderate risk for breast and ovarian cancer. Fam Cancer 7(1389–9600):347–359CrossRefPubMedGoogle Scholar
  50. 50.
    Walker MJ, Chiarelli AM, Knight JA, Mirea L, Glendon G, Ritvo P (2013) Perceived risk and adherence to breast cancer screening guidelines among women with a familial history of breast cancer: a review of the literature. Breast 22(1532–3080):395–404CrossRefPubMedGoogle Scholar
  51. 51.
    Howard AF, Balneaves LG, Bottorff JL (2009) Women’s decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: a systematic review. J Genet Couns 18(1573–3599):578–597CrossRefPubMedGoogle Scholar
  52. 52.
    Germeni E, Bianchi M, Valcarenghi D, Schulz PJ (2015) Longitudinal qualitative exploration of cancer information-seeking experiences across the disease trajectory: the INFO-SEEK protocol. BMJ Open 5(10):e008933. doi: 10.1136/bmjopen-2015-008933 CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Lisa Vetter
    • 1
  • Monika Keller
    • 2
  • Thomas Bruckner
    • 3
  • Michael Golatta
    • 1
  • Sabine Eismann
    • 1
  • Christina Evers
    • 4
  • Nicola Dikow
    • 4
  • Christof Sohn
    • 1
  • Jörg Heil
    • 1
  • Sarah Schott
    • 1
    • 5
    Email author
  1. 1.Department of Obstetrics and GynecologyUniversity Hospital HeidelbergHeidelbergGermany
  2. 2.Department of Psychosomatic, Internal MedicineUniversity Hospital HeidelbergHeidelbergGermany
  3. 3.Institute of Medical Biometry and InformaticsUniversity Hospital HeidelbergHeidelbergGermany
  4. 4.Institute of Human GeneticsHeidelberg UniversityHeidelbergGermany
  5. 5.DKTKGerman Cancer Research Center, DKFZ HeidelbergHeidelbergGermany

Personalised recommendations