Top

Published in:

01-12-2011

Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study

Authors: Helle Vendel Petersen, Mary Jane Esplen, Steen Ladelund, Inge Bernstein, Lone Sunde, Christina Carlsson, Mef Nilbert

Published in: Familial Cancer | Issue 4/2011

Abstract

An increasing number of individuals seek genetic counseling and hereby learn about hereditary cancer in the family. Lynch syndrome is associated with an inherited high risk for colorectal and gynecological cancer, but knowledge about how family members at risk perceive their situation is limited. We used the national Danish HNPCC register to collect data on self-concept from 413 individuals with Lynch syndrome. The recently developed Lynch syndrome self-concept scale contains 20 items within two subscales related to stigma-vulnerability and bowel symptom-related anxiety. Significantly higher total scores, indicating a greater impact on self-concept, were reported by females and by individuals with experience from cancer in close relatives, whereas individuals with less formal education scored significantly higher on the stigma and vulnerability subscale. Scores in the upper quartile were more often reported by women (odds ratio 1.8) and by individuals with less education (OR 1.8). This study provides the first extended use of the Lynch syndrome self-concept scale and suggests that the majority of the Danish mutation carriers adapt well to the situation, though knowledge about the increased risk of cancer seem to have a greater impact in females, individuals with less education and those with experience of cancer in close relatives.

Lynch HT, Lynch JF, Lynch PM, Attard T (2008) Hereditary colorectal cancer syndromes: molecular genetics, genetic counseling, diagnosis and management. Fam Cancer 7:27–39PubMedCrossRef

Lynch PM (2007) New issues in genetic counseling of hereditary colon cancer. Clin Cancer Res 13:6857s–6861s

Marshall M, Solomon S (2007) Hereditary breast-ovarian cancer: clinical findings and medical management. Plast Surg Nurs 27:124–127PubMed

Aarnio M, Sankila R, Pukkala E, Salovaara R, Aaltonen LA, de la CA, Peltomaki P, Mecklin JP, Jarvinen HJ (1999) Cancer risk in mutation carriers of DNA-mismatch-repair genes. Int J Cancer 81:214–218

Lynch HT, Lynch PM, Lanspa SJ, Snyder CL, Lynch JF, Boland CR (2009) Review of the Lynch syndrome: history, molecular genetics, screening, differential diagnosis, and medicolegal ramifications. Clin Genet 76:1–18PubMedCrossRef

Jarvinen HJ, Renkonen-Sinisalo L, Aktan-Collan K, Peltomaki P, Aaltonen LA, Mecklin JP (2009) Ten years after mutation testing for lynch syndrome: cancer incidence and outcome in mutation-positive and mutation-negative family members. J Clin Oncol 27:4793–4797PubMedCrossRef

Renkonen-Sinisalo L, Aarnio M, Mecklin JP, Jarvinen HJ (2000) Surveillance improves survival of colorectal cancer in patients with hereditary nonpolyposis colorectal cancer. Cancer Detect Prev 24:137–142PubMed

Mack LA, Cook LS, Temple WJ, Carlson LE, Hilsden RJ, Paolucci EO (2009) Colorectal cancer screening among first-degree relatives of colorectal cancer patients: benefits and barriers. Ann Surg Oncol 16:2092–2100PubMedCrossRef

Keller M, Jost R, Kadmon M, Wullenweber HP, Haunstetter CM, Willeke F, Jung C, Gebert J, Sutter C, Herfarth C, Buchler MW (2004) Acceptance of and attitude toward genetic testing for hereditary nonpolyposis colorectal cancer: a comparison of participants and nonparticipants in genetic counseling. Dis Colon Rectum 47:153–162PubMedCrossRef

10.

Kinney AY, Choi YA, DeVellis B, Kobetz E, Millikan RC, Sandler RS (2000) Interest in genetic testing among first-degree relatives of colorectal cancer patients. Am J Prev Med 18:249–252PubMedCrossRef

11.

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

12.

Keller M, Jost R, Haunstetter CM, Kienle P, Knaebel HP, Gebert J, Sutter C, Knebel-Doeberitz M, Cremer F, Mazitschek U (2002) Comprehensive genetic counseling for families at risk for HNPCC: impact on distress and perceptions. Genet Test 6:291–302PubMedCrossRef

13.

Aktan-Collan K, Haukkala A, Mecklin JP, Uutela A, Kaariainen H (2001) Psychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a prospective follow-up study. Int J Cancer 93:608–611

14.

Collins VR, Meiser B, Ukoumunne OC, Gaff C, St John DJ, Halliday JL (2007) The impact of predictive genetic testing for hereditary nonpolyposis colorectal cancer: three years after testing. Genet Med 9:290–297PubMedCrossRef

15.

Meiser B, Collins V, Warren R, Gaff C, St John DJ, Young MA, Harrop K, Brown J, Halliday J (2004) Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clin Genet 66:502–511PubMedCrossRef

16.

Meiser B (2005) Psychological impact of genetic testing for cancer susceptibility: an update of the literature. Psychooncology 14:1060–1074PubMedCrossRef

17.

Esplen MJ, Stuckless N, Hunter J, Liede A, Metcalfe K, Glendon G, Narod S, Butler K, Scott J, Irwin E (2009) The BRCA Self-Concept Scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers. Psychooncology 18:1216–1229PubMedCrossRef

18.

Esplen MJ, Stuckless N, Wong J, Gallinger S, Aronson M, Rothenmund H, Semotiuk K, Stokes J, Way C, Green J, Butler K (2011) Development and validation of an instrument to measure the impact on self-concept in Lynch syndrome. Unpublished

19.

Bleiker EM, Hahn DE, Aaronson NK (2003) Psychosocial issues in cancer genetics–current status and future directions. Acta Oncol 42:276–286PubMedCrossRef

20.

Esplen MJ, Stuckless N, Hunter J, Liede A, Metcalfe K, Glendon G, Narod S, Butler K, Scott J, Irwin E (2009) The BRCA self-concept scale: a new instrument to measure self-concept in BRCA1/2 mutation carriers. Psychooncology 18:1216–1229PubMedCrossRef

21.

Landsbergen KM, Prins JB, Brunner HG, Kraaimaat FW, Hoogerbrugge N (2009) Genetic testing for Lynch syndrome in the first year of colorectal cancer: a review of the psychological impact. Fam Cancer 8:325–337PubMedCrossRef

22.

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

23.

Corte C, Zucker RA (2008) Self-concept disturbances: cognitive vulnerability for early drinking and early drunkenness in adolescents at high risk for alcohol problems. Addict Behav 33:1282–1290PubMedCrossRef

24.

Markus H, Wurf E (1987) The dynamic self-concept: a social psychological perspective. Ann Rev Psychol 38:299–337CrossRef

25.

26.

Esplen MJ, Stuckless N, Berk T, Butler K, Gallinger S (2009) The FAP self-concept scale (adult form). Fam Cancer 8:39–50PubMedCrossRef

27.

Petersen HV, Domanska K, Bendahl PO, Wong J, Carlsson C, Bernstein I, Esplen MJ, Nilbert M (2011) Validation of a self-concept scale for Lynch syndrome in different nationalities. J Genet Couns 20:308–313PubMedCrossRef

28.

Bonomi AE, Cella DF, Hahn EA, Bjordal K, Sperner-Unterweger B, Gangeri L, Bergman B, Willems-Groot J, Hanquet P, Zittoun R (1996) Multilingual translation of the functional assessment of cancer therapy (FACT) quality of life measurement system. Qual Life Res 5:309–320PubMedCrossRef

29.

Hunt SM, Alonso J, Bucquet D, Niero M, Wiklund I, McKenna S (1991) Cross-cultural adaptation of health measures. European group for health management and quality of life assessment. Health Policy 19:33–44PubMedCrossRef

30.

Sousa VD, Rojjanasrirat W (2010) Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: a clear and user-friendly guideline. J Eval Clin Pract 17:268–274PubMedCrossRef

31.

Esplen MJ, Urquhart C, Butler K, Gallinger S, Aronson M, Wong J (2003) The experience of loss and anticipation of distress in colorectal cancer patients undergoing genetic testing. J Psychosom Res 55:427–435PubMedCrossRef

32.

Murakami Y, Gondo N, Okamura H, Akechi T, Uchitomi Y (2001) Guilt from negative genetic test findings. Am J Psychiat 158:1929PubMedCrossRef

33.

Murakami Y, Okamura H, Sugano K, Yoshida T, Kazuma K, Akechi T, Uchitomi Y (2004) Psychologic distress after disclosure of genetic test results regarding hereditary nonpolyposis colorectal carcinoma. Cancer 101:395–403

34.

Vernon SW, Gritz ER, Peterson SK, Amos CI, Perz CA, Baile WF, Lynch PM (1997) Correlates of psychologic distress in colorectal cancer patients undergoing genetic testing for hereditary colon cancer. Health Psychol 16:73–86PubMedCrossRef

35.

Rao K (2009) Recent research in stress, coping and women’s health. Curr Opin Psychiatry 22:188–193PubMedCrossRef

36.

Barthuma K, Nilbert M, Carlsson C (2011) Family perspectives in Lynch syndrome; transition to a risk family, communications and relations. Unpublished

37.

Schmaus BJ, Laubmeier KK, Boquiren VM, Herzer M, Zakowski SG (2008) Gender and stress: differential psychophysiological reactivity to stress reexposure in the laboratory. Int J Psychophysiol 69:101–106PubMedCrossRef

38.

Wang J, Korczykowski M, Rao H, Fan Y, Pluta J, Gur RC, McEwen BS, Detre JA (2007) Gender difference in neural response to psychological stress. Soc Cogn Affect Neurosci 2:227–239PubMedCrossRef

39.

Bennett P, Wilkinson C, Turner J, Edwards RT, France B, Griffin G, Gray J (2009) Factors associated with intrusive cancer-related worries in women undergoing cancer genetic risk assessment. Fam Cancer 8:159–165PubMedCrossRef

40.

Broadstock M, Michie S, Marteau T (2000) Psychological consequences of predictive genetic testing: a systematic review. Eur J Hum Genet 8:731–738PubMedCrossRef

41.

van OI, Meijers-Heijboer H, Duivenvoorden HJ, Brocker-Vriends AH, van Asperen CJ, Sijmons RH, Seynaeve C, van Gool AR, Klijn JG, Tibben A (2007) Prognostic factors for hereditary cancer distress six months after BRCA1/2 or HNPCC genetic susceptibility testing. Eur J Cancer 43:71–77 43CrossRef

42.

Thoits PA (2010) Stress and health: major findings and policy implications. J Health Soc Behav 51(Suppl):S41–S53PubMedCrossRef

Title: Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study
Authors: Helle Vendel Petersen
Mary Jane Esplen
Steen Ladelund
Inge Bernstein
Lone Sunde
Christina Carlsson
Mef Nilbert
Publication date: 01-12-2011
Publisher: Springer Netherlands
Published in: Familial Cancer / Issue 4/2011
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI: https://doi.org/10.1007/s10689-011-9459-5

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 4/2011

Acinic cell carcinoma of the retromolar trigone region: expanding the tumor phenotype in Cowden syndrome?

The identification and management of hereditary diffuse gastric cancer in a large Jordanian family

Microsatellite instability analysis in uterine cavity washings as a screening tool for endometrial cancer in Lynch syndrome

Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center

Abstracts

Characterization of germline mutations of MLH1 and MSH2 in unrelated south American suspected Lynch syndrome individuals

Keynote webinar | Spotlight on antibody–drug conjugates in cancer