Supportive Care in Cancer

, Volume 17, Issue 11, pp 1371–1381 | Cite as

Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer

  • Cathrine Bjorvatn
  • Geir Egil Eide
  • Berit R. Hanestad
  • Anniken Hamang
  • Odd E. Havik
Original Article

Abstract

Goals of work

Genetic counseling for hereditary cancer is expected to involve a growing number of individuals in the near future since an increasing number of genetic tests are offered. This study was designed to identify psychosocial variables predicting distress after genetic investigation and genetic counseling (GC) in order to develop new counseling strategies.

Materials and methods

A prospective multi-site study was undertaken on 214 patients undergoing GC for hereditary cancer to explore the relationships between socio-demographic variables, medical variables, social support, self-efficacy, physical functioning, satisfaction with GC, the level of worry after GC, results of genetic testing, and the course and outcomes of distress. Distress was measured with the Impact of Event Scale, which includes subscales of intrusion and avoidance. Patients completed questionnaires mailed to them before and after GC.

Main results

The mean level of intrusion and avoidance was moderate, even though one quarter of participants reported a severe level of intrusion at baseline. Subjects with a low level of self-efficacy at baseline and high level of worry immediately after GC seemed to be vulnerable to both intrusion and avoidance. Lower level of intrusion was also associated with having a first-degree relative with cancer, while a lower avoidance level was associated with a higher level of education, having cancer, more social support, and higher satisfaction with GC.

Conclusions

In this study, subjects who had lower level of self-efficacy at baseline and a high level of worry immediately after GC seemed to be vulnerable to both intrusion and avoidance in this study.

Keywords

Intrusion Avoidance Genetic counseling Hereditary cancer Subjective distress 

Notes

Acknowledgments

The authors are grateful for the assistance with data collection provided by the Centre of Medical Genetics and Molecular Medicine, Haukeland University Hospital, Bergen, Norway, and the Centre of Medical Genetics, St. Olav Hospital, Trondheim, Norway. We are also grateful to Professor Cathrine Himberg, California State University, for linguistic advice. This project was funded by the Norwegian Research Council, Functional Genome Project (FUGE) no. 155757/510.

References

  1. 1.
    American Psychiatric Association (1997) Diagnostiske kriterier fra DSM-IV, 4th edn. Pilgrim Press, OsloGoogle Scholar
  2. 2.
    Baider L, Ever-Hadani P, Kaplan De-Nour A (1999) Psychological distress in healthy women with familial breast cancer: like mother, like daughter? Int J Psychiatry Med 29:411–420PubMedGoogle Scholar
  3. 3.
    Bandura A (1997) Self-efficacy: the exercise of control. Freeman, New YorkGoogle Scholar
  4. 4.
    Berglund G, Liden A, Hansson MG, Oberg K, Sjoden PO, Nordin K (2003) Quality of life in patients with multiple endocrine neoplasia type 1 (MEN 1). Fam Cancer 2:27–33. doi:10.1023/A:1023252107120 CrossRefPubMedGoogle Scholar
  5. 5.
    Berkenstadt M, Shiloh S, Barkai G, Katznelson MB, Goldman B (1999) Perceived personal control (PPC): a new concept in measuring outcome of genetic counseling. Am J Med Genet 82:53–59. doi:10.1002/(SICI) 1096-8628(19990101) 82:1<53::AID-AJMG11>3.0.CO;2-# CrossRefPubMedGoogle Scholar
  6. 6.
    Bjorvatn C, Eide GE, Hanestad BR, Havik OE (2008) Anxiety and depression among subjects attending genetic counseling for hereditary cancer. Patient Educ Couns 71:234–243. doi:10.1016/j.pec.2008.01.008 CrossRefPubMedGoogle Scholar
  7. 7.
    Bjorvatn C, Eide GE, Hanestad BR, Oyen N, Havik OE, Carlsson A, Berglund G (2007) Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. J Genet Couns 16:211–222. doi:10.1007/s10897-006-9061-4 CrossRefPubMedGoogle Scholar
  8. 8.
    Chung MC, Berger Z, Rudd H (2008) Coping with posttraumatic stress disorder and comorbidity after myocardial infarction. Compr Psychiatry 49:55–64. doi:10.1016/j.comppsych.2007.08.003 CrossRefPubMedGoogle Scholar
  9. 9.
    Claes E, Evers-Kiebooms G, Denayer L, Decruyenaere M, Boogaerts A, Philippe K, Legius E (2005) Predictive genetic testing for hereditary breast and ovarian cancer: psychological distress and illness representations 1 year following disclosure. J Genet Couns 14:349–363. doi:10.1007/s10897-005-1371-4 CrossRefPubMedGoogle Scholar
  10. 10.
    Condello C, Gesuita R, Pensabene M, Spagnoletti I, Capuano I, Baldi C, Carle F, Contegiacomo A (2007) Distress and family functioning in oncogenetic counselling for hereditary and familial breast and/or ovarian cancers. J Genet Couns 16:625–634. doi:10.1007/s10897-007-9102-7 CrossRefPubMedGoogle Scholar
  11. 11.
    Eide H, Graugaard P, Holgersen K, Finset A (2003) Physician communication in different phases of a consultation at an oncology outpatient clinic related to patient satisfaction. Patient Educ Couns 51:259–266. doi:10.1016/S0738-3991(02) 00225-2 CrossRefPubMedGoogle Scholar
  12. 12.
    Esplen MJ, Madlensky L, Aronson M, Rothenmund H, Gallinger S, Butler K, Toner B, Wong J, Manno M, McLaughlin J (2007) Colorectal cancer survivors undergoing genetic testing for hereditary non-polyposis colorectal cancer: motivational factors and psychosocial functioning. Clin Genet 72:394–401PubMedCrossRefGoogle Scholar
  13. 13.
    Geirdal AO, Reichelt JG, Dahl AA, Heimdal K, Maehle L, Stormorken A, Moller P (2005) Psychological distress in women at risk of hereditary breast/ovarian or HNPCC cancers in the absence of demonstrated mutations. Fam Cancer 4:121–126. doi:10.1007/s10689-004-7995-y CrossRefPubMedGoogle Scholar
  14. 14.
    Gueorguieva R, Krystal JH (2004) Move over ANOVA: progress in analyzing repeated-measures data and its reflection in papers published in the Archives of General Psychiatry. Arch Gen Psychiatry 61:310–317. doi:10.1001/archpsyc.61.3.310 CrossRefPubMedGoogle Scholar
  15. 15.
    Hall JA, Dornan MC (1990) Patient sociodemographic characteristics as predictors of satisfaction with medical care: a meta-analysis. Soc Sci Med 30:811–818. doi:10.1016/0277-9536(90) 90205-7 CrossRefPubMedGoogle Scholar
  16. 16.
    Horowitz M, Wilner N, Alvarez W (1979) Impact of Event Scale: a measure of subjective stress. Psychosom Med 41:209–218PubMedGoogle Scholar
  17. 17.
    Jackson JL, Chamberlin J, Kroenke K (2001) Predictors of patient satisfaction. Soc Sci Med 52:609–620. doi:10.1016/S0277-9536(00) 00164-7 CrossRefPubMedGoogle Scholar
  18. 18.
    Jadoulle V, Rokbani L, Ogez D, Maccioni J, Lories G, Bruchon-Schweitzer M, Constant A (2006) Coping and adapting to breast cancer: a six-month prospective study. Bull Cancer 93:E67–E72PubMedGoogle Scholar
  19. 19.
    Kasparian NA, Wakefield CE, Meiser B (2007) Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales. J Genet Couns 16:693–712. doi:10.1007/s10897-007-9111-6 CrossRefPubMedGoogle Scholar
  20. 20.
    King KB, Reis HT, Porter LA, Norsen LH (1993) Social support and long-term recovery from coronary artery surgery: effects on patients and spouses. Health Psychol 12:56–63. doi:10.1037/0278-6133.12.1.56 CrossRefPubMedGoogle Scholar
  21. 21.
    Koopman C, Butler LD, Classen C, Giese-Davis J, Morrow GR, Westendorf J, Banerjee T, Spiegel D (2002) Traumatic stress symptoms among women with recently diagnosed primary breast cancer. J Trauma Stress 15:277–287. doi:10.1023/A:1016295610660 CrossRefPubMedGoogle Scholar
  22. 22.
    Mehnert A, Koch U (2007) Prevalence of acute and post-traumatic stress disorder and comorbid mental disorders in breast cancer patients during primary cancer care: a prospective study. Psychooncology 16:181–188. doi:10.1002/pon.1057 CrossRefPubMedGoogle Scholar
  23. 23.
    Moller P, Evans G, Haites N, Vasen H, Reis MM, Anderson E, Apold J, Hodgson S, Eccles D, Olsson H, Stoppa-Lyonnet D, Chang-Claude J, Morrison PJ, Bevilacqua G, Heimdal K, Maehle L, Lalloo F, Gregory H, Preece P, Borg A, Nevin NC, Caligo M, Steel CM (1999) Guidelines for follow-up of women at high risk for inherited breast cancer: consensus statement from the Biomed 2 Demonstration Programme on Inherited Breast Cancer. Dis Markers 15:207–211PubMedGoogle Scholar
  24. 24.
    Neville K (1998) The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. J Pediatr Oncol Nurs 15:37–46PubMedGoogle Scholar
  25. 25.
    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 39:689–694. doi:10.1136/jmg.39.9.689 CrossRefPubMedGoogle Scholar
  26. 26.
    Pigott C, Pollard A, Thomson K, Aranda S (2008) Unmet needs in cancer patients: development of a supportive needs screening tool (SNST). Support Care Cancer 17:33–45CrossRefPubMedGoogle Scholar
  27. 27.
    Rabin C, Rogers ML, Pinto BM, Nash JM, Frierson GM, Trask PC (2007) Effect of personal cancer history and family cancer history on levels of psychological distress. Soc Sci Med 64:411–416. doi:10.1016/j.socscimed.2006.09.004 CrossRefPubMedGoogle Scholar
  28. 28.
    Reichelt JG, Dahl AA, Heimdal K, Moller P (1999) Uptake of genetic testing and pre-test levels of mental distress in Norwegian families with known BRCA1 mutations. Dis Markers 15:139–143PubMedGoogle Scholar
  29. 29.
    Reichelt JG, Heimdal K, Moller P, Dahl AA (2004) BRCA1 testing with definitive results: a prospective study of psychological distress in a large clinic-based sample. Fam Cancer 3:21–28. doi:10.1023/B:FAME.0000026820.32469.4a CrossRefPubMedGoogle Scholar
  30. 30.
    Ringdal GI, Ringdal K, Jordhoy MS, Kaasa S (2007) Does social support from family and friends work as a buffer against reactions to stressful life events such as terminal cancer? Palliat Support Care 5:61–69. doi:10.1017/S1478951507070083 PubMedCrossRefGoogle Scholar
  31. 31.
    Rini C, Jandorf L, Valdimarsdottir H, Brown K, Itzkowitz SH (2008) Distress among inflammatory bowel disease patients at high risk for colorectal cancer: a preliminary investigation of the effects of family history of cancer, disease duration, and perceived social support. Psychooncology 17:354–362. doi:10.1002/pon.1227 CrossRefPubMedGoogle Scholar
  32. 32.
    Rodriguez-Bigas MA, Boland CR, Hamilton SR, Henson DE, Jass JR, Khan PM, Lynch H, Perucho M, Smyrk T, Sobin L, Srivastava S (1997) A National Cancer Institute Workshop on Hereditary Nonpolyposis Colorectal Cancer Syndrome: meeting highlights and Bethesda guidelines. J Natl Cancer Inst 89:1758–1762CrossRefPubMedGoogle Scholar
  33. 33.
    Sanderson SC, Michie S (2007) Genetic testing for heart disease susceptibility: potential impact on motivation to quit smoking. Clin Genet 71:501–510. doi:10.1111/j.1399-0004.2007.00810.x CrossRefPubMedGoogle Scholar
  34. 34.
    Schlich-Bakker KJ, Warlam-Rodenhuis CC, van Echtelt J, van den Bout J, Ausems MG, ten Kroode HF (2006) Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer. Eur J Cancer 42:2722–2728. doi:10.1016/j.ejca.2006.05.032 CrossRefPubMedGoogle Scholar
  35. 35.
    Sheldrick R, Tarrier N, Berry E, Kincey J (2006) Post-traumatic stress disorder and illness perceptions over time following myocardial infarction and subarachnoid haemorrhage. Br J Health Psychol 11:387–400. doi:10.1348/135910705X71434 CrossRefPubMedGoogle Scholar
  36. 36.
    Shiloh S, Avdor O, Goodman RM (1990) Satisfaction with genetic counseling: dimensions and measurement. Am J Med Genet 37:522–529. doi:10.1002/ajmg.1320370419 CrossRefPubMedGoogle Scholar
  37. 37.
    Sundin EC, Horowitz MJ (2002) Impact of Event Scale: psychometric properties. Br J Psychiatry 180:205–209. doi:10.1192/bjp. 180.3.205 CrossRefPubMedGoogle Scholar
  38. 38.
    Thewes B, Meiser B, Hickie IB (2001) Psychometric properties of the Impact of Event Scale amongst women at increased risk for hereditary breast cancer. Psychooncology 10:459–468. doi:10.1002/pon.533 CrossRefPubMedGoogle Scholar
  39. 39.
    Tjemsland L, Soreide JA, Malt UF (1998) Posttraumatic distress symptoms in operable breast cancer III: status one year after surgery. Breast Cancer Res Treat 47:141–151. doi:10.1023/A:1005957302990 CrossRefPubMedGoogle Scholar
  40. 40.
    Vadaparampil ST, Ropka M, Stefanek ME (2005) Measurement of psychological factors associated with genetic testing for hereditary breast, ovarian and colon cancers. Fam Cancer 4:195–206. doi:10.1007/s10689-004-1446-7 CrossRefPubMedGoogle Scholar
  41. 41.
    van der Kolk BA (2001) The psychobiology and psychopharmacology of PTSD. Hum Psychopharmacol Clin Exp 16:49–64. doi:10.1002/hup. 270 CrossRefGoogle Scholar
  42. 42.
    van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ, Brocker-Vriends AH, van Asperen CJ, Sijmons RH, Seynaeve C, Van Gool AR, Klijn JG, Tibben A (2007) The common sense model of self-regulation and psychological adjustment to predictive genetic testing: a prospective study. Psychooncology 16:1121–1129. doi:10.1002/pon.1178 CrossRefPubMedGoogle Scholar
  43. 43.
    Vasen HF, Mecklin JP, Khan PM, Lynch HT (1991) The International Collaborative Group on Hereditary Non-Polyposis Colorectal Cancer (ICG-HNPCC). Dis Colon Rectum 34:424–425. doi:10.1007/BF02053699 CrossRefPubMedGoogle Scholar
  44. 44.
    Vasen HF, Watson P, Mecklin JP, Lynch HT (1999) New clinical criteria for hereditary nonpolyposis colorectal cancer (HNPCC, Lynch syndrome) proposed by the International Collaborative group on HNPCC. Gastroenterology 116:1453–1456. doi:10.1016/S0016-5085(99) 70510-X CrossRefPubMedGoogle Scholar
  45. 45.
    Ware JE, Kosinski M, Gandek B et al (2000) SF-36 health survey : manual & interpretation guide. QualityMetric, Lincoln, RIGoogle Scholar
  46. 46.
    Aalfs CM, Oort FJ, de Haes JC, Leschot NJ, Smets EM (2007) A comparison of counselee and counselor satisfaction in reproductive genetic counseling. Clin Genet 72:74–82. doi:10.1111/j.1399-0004.2007.00834.x CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag 2009

Authors and Affiliations

  • Cathrine Bjorvatn
    • 1
    • 2
  • Geir Egil Eide
    • 1
    • 3
  • Berit R. Hanestad
    • 1
    • 4
  • Anniken Hamang
    • 1
    • 4
  • Odd E. Havik
    • 1
    • 4
  1. 1.Department of Public Health and Primary Health CareUniversity of BergenBergenNorway
  2. 2.Center of Medical Genetics and Molecular MedicineHaukeland University HospitalBergenNorway
  3. 3.Centre for Clinical ResearchHaukeland University HospitalBergenNorway
  4. 4.Department of Clinical PsychologyUniversity of BergenBergenNorway

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