Top

Published in:

Open Access 01-12-2019 | Colonoscopy | Research

Examining intrafamilial communication of colorectal cancer risk status to family members and kin responses to colonoscopy: a qualitative study

Authors: Kaitlin M. McGarragle, Crystal Hare, Spring Holter, Dorian Anglin Facey, Kelly McShane, Steven Gallinger, Tae L. Hart

Published in: Hereditary Cancer in Clinical Practice | Issue 1/2019

Abstract

Background

First-degree relatives (FDRs) of probands with colorectal cancer (CRC) may be at increased risk of CRC and require colonoscopy. Proband disclosure about this risk and need for colonoscopy is essential for FDRs to take appropriate action. Low colonoscopy rates are reported among FDRs and little is known about the proband disclosure process. A better understanding of the barriers surrounding colonoscopy and disclosure is needed.

Methods

CRC probands (n = 16) and FDRs (n = 9), recruited from a Canadian CRC Consortium, completed interviews to determine barriers to disclosure and colonoscopy, respectively. Interviews were analyzed using thematic analysis and participants’ motivation to disclose to FDRs or undertake colonoscopy was categorized into Stages of Change (i.e., Precontemplation, Contemplation, Preparation, Action, or Maintenance) using the transtheoretical model.

Results

25% of probands had not disclosed to any first-degree kin and were categorized in the Precontemplation or Contemplation Stage of Change. Barriers to disclosure included lack of information, negative expectations about familial reaction, assuming FDRs were aware of risk or already being screened, dysfunctional family dynamics, and cultural barriers. 75% of FDRs were categorized in the Precontemplation or Contemplation Stage of Change. Barriers included negative perceptions about colonoscopy, health-care provider related factors, practical concerns, and lack of information about CRC, risk, and colonoscopy.

Conclusions

In the absence of barriers such as cost and accessibility, this Canadian sample still reported several challenges to disclosure and colonoscopy adherence. Future research should explore interventions such as motivational interviewing to improve proband disclosure and to increase FDR adherence to colonoscopy.

Noone AM, Howlader N, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA. SEER Cancer Statistics Review, 1975-2015, National Cancer Institute. Bethesda. Available at: https://seer.cancer.gov/csr/1975_2015/. Accessed 18 June 2019.

Canadian Cancer Statistics Advisory Committee. Canadian Cancer Statistics 2018. Toronto: Canadian Cancer Society; 2018. Available at: cancer.Ca/Canadian-Cancer-Statistics-2018-EN

Bronner K, Mesters I, Weiss-Meilik A, Geva R, Rozner G, Strul H, Inbar M, Halpern Z, Kariv R. Determinants of adherence to screening by colonoscopy in individuals with a family history of colorectal cancer. Patient Educ Couns. 2013;93(2):272–81. https://doi.org/10.1016/j.pec.2013.06.029.CrossRefPubMed

Koc S, Esin MN. Screening behaviors, health beliefs, and related factors of first-degree relatives of colorectal cancer patients with ongoing treatment in Turkey. Cancer Nurs. 2014;37(6):E51–60. https://doi.org/10.1097/NCC.0000000000000121.CrossRefPubMed

Lin OS, Gluck M, Nguyen M, Koch J, Kozarek RA. Screening patterns in patients with a family history of colorectal cancer often do not adhere to national guidelines. Dig Dis Sci. 2013;58(7):1841–8. https://doi.org/10.1007/s10620-013-2567-3.CrossRefPubMed

Tan KK, Lopez V, Wong ML, Koh GCH. Uncovering the barriers to undergoing screening among first degree relatives of colorectal cancer patients: a review of qualitative literature. J Gastrointest Oncol. 2018;9(3):579–88. https://doi.org/10.21037/jgo.2018.03.02.CrossRefPubMedPubMedCentral

Bujanda L, Sarasqueta C, Zubiaurre L, Cosme A, Muñoz C, Sánchez A. Low adherence to colonoscopy in the screening of first-degree relatives of patients with colorectal cancer. Gut. 2007;56(12):1714–8. https://doi.org/10.1136/gut.2007.120709.CrossRefPubMedPubMedCentral

Rawl SM, Menon U, Champion VL, May FE, Loehrer P Sr, Hunter C, Azzouz F, Monahan PO, Skinner CS. Do benefits and barriers differ by stage of adoption for colorectal cancer screening? Health Educ Res. 2005;20(2):137–48. https://doi.org/10.1093/her/cyg110.CrossRefPubMed

Lowery JT, Marcus A, Kinney A, Bowen D, Finkelstein DM, Horick N, Garrett K, Haile R, Sandler R, Ahnen DJ. The family health promotion project (FHPP): design and baseline data from a randomized trial to increase colonoscopy screening in high risk families. Contemp Clin Trials. 2012;33(2):426–35. https://doi.org/10.1016/j.cct.2011.11.005 Epub 2011 Nov 12.CrossRefPubMed

10.

Boonyasiriwat W, Hung M, Hon SD, Tang P, Pappas LM, Burt RW, Schwartz MD, Stroup AM, Kinney AY. Intention to undergo colonoscopy screening among relatives of colorectal cancer cases: a theory-based model. Ann Behav Med. 2014;47(3):280–91. https://doi.org/10.1007/s12160-013-9562-y.CrossRefPubMed

11.

Tan KK, Lim TZ, Chan DKH, Chew E, Chow WM, Luo N, Wong ML, Koh GC. Getting the first degree relatives to screen for colorectal cancer is harder than it seems—patients’ and their first degree relatives’ perspectives. Int J Color Dis. 2017;32(7):1065–8. https://doi.org/10.1007/s00384-017-2818-4.CrossRef

12.

Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E. Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet A. 2003;116A(1):11–9. https://doi.org/10.1002/ajmg.a.10868. CrossRefPubMed

13.

Aktan-Collan KI, Kääriäinen HA, Kolttola EM, Pylvänäinen K, Järvinen HJ, Haukkala AH, Mecklin JP. Sharing genetic risk with next generation: mutation-positive parents’ communication with their offspring in Lynch syndrome. Familial Cancer. 2011;10(1):43–50. https://doi.org/10.1007/s10689-010-9386-x.CrossRefPubMed

14.

Chivers Seymour K, Addington-Hall J, Lucassen AM, Foster CL. What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. J Genet Couns. 2010;19(4):330–42. https://doi.org/10.1007/s10897-010-9296-y.CrossRefPubMed

15.

Mesters I, Ausems M, Eichhorn S, Vasen H. Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Familial Cancer. 2005;4(2):163–7. https://doi.org/10.1007/s10689-004-7992-1.CrossRefPubMed

16.

Trauth JM, Ling BS, Weissfeld JL, Schoen RE, Hayran M. Using the transtheoretical model to stage screening behavior for colorectal cancer. Health Educ Behav. 2003;30(3):322–36. https://doi.org/10.1177/1090198103030003007.CrossRefPubMed

17.

DuHamel K, Li Y, Rakowski W, Samimi P, Jandorf L. Validity of the process of change for colorectal cancer screening among African Americans. Ann Behav Med. 2011;41(3):271–83. https://doi.org/10.1007/s12160-010-9250-0.CrossRefPubMedPubMedCentral

18.

Lee-Lin F, Nguyen T, Pedhiwala N, Dieckmann NF, Menon U. A longitudinal examination of stages of change model applied to mammography screening. West J Nurs Res. 2016;38(4):441–58. https://doi.org/10.1177/0193945915618398.CrossRefPubMed

19.

Prochaska JO, Velicer WF, Rossi JS, Goldstein MG, Marcus BH, Rakowski W, Fiore C, Harlow LL, Redding CA, Rosenbloom D, Rossi SR. Stages of change and decisional balance for 12 problem behaviors. Health Psychol. 1994;13(1):39–46. https://doi.org/10.1037/0278-6133.13.1.39.CrossRefPubMed

20.

Prochaska JO. Decision making in the transtheoretical model of behavior change. Med Decis Mak. 2008;28(6):845–9. https://doi.org/10.1177/0272989X08327068.CrossRef

21.

Wang HL, Christy SM, Skinner CS, Champion VL, Springston JK, Perkins SM, Tong Y, Krier C, Gebregziabher N, Rawl SM. Predictors of stage of adoption for colorectal cancer screening among african american primary care patients. Cancer Nurs. 2014;37(4):241–51.CrossRef

22.

Manne S, Markowitz A, Winawer S, Meropol NJ, Haller D, Rakowski W, Babb J, Jandorf L. Correlates of colorectal cancer screening compliance and stage of adoption among siblings of individuals with early onset colorectal cancer. Health Psychol. 2002;21(1):3–15. https://doi.org/10.1037/0278-6133.21.1.3.CrossRefPubMed

23.

Paddison JS, Yip MJ. Exploratory study examining barriers to participation in colorectal cancer screening. Aust J Rural Health. 2010;18(1):11–5. https://doi.org/10.1111/j.1440-1584.2009.01114.x.CrossRefPubMed

24.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. https://doi.org/10.1191/1478088706qp063oa.CrossRef

25.

Katz LH, Burton-Chase AM, Advani S, Fellman B, Polivka KM, Yuan U, Lynch PM, Peterson SK. Screening adherence and cancer risk perceptions in colorectal cancer survivors with Lynch-like syndrome. Clin Genet. 2016;89(3):392–8. https://doi.org/10.1111/cge.12653.CrossRefPubMed

26.

Steffen LE, Boucher KM, Damron BH, Pappas LM, Walters ST, Flores KG, Boonyasiriwat W, Vernon SW, Stroup AM, Schwartz MD, Edwards SL, Kohlmann WK, Lowery JT, Wiggins CL, Hill DA, Higginbotham JC, Burt R, Simmons RG, Kinney AY. Efficacy of a telehealth intervention on colonoscopy uptake when cost is a barrier: the family CARE cluster randomized controlled trial. Cancer Epidemiol Biomark Prev. 2015;24(9):1311–8. https://doi.org/10.1158/1055-9965.EPI-15-0150.CrossRef

27.

Lowery JT, Horick N, Kinney AY, Finkelstein DM, Garrett K, Haile RW, Lindor NM, Newcomb PA, Sandler RS, Burke C, Hill DA, Ahnen DJ. A randomized trial to increase colonoscopy screening in members of high-risk families in the colorectal cancer family registry and cancer genetics network. Cancer Epidemiol Biomark Prev. 2014;23(4):601–10. https://doi.org/10.1158/1055-9965.EPI-13-1085.CrossRef

28.

Kinney AY, Boonyasiriwat W, Walters ST, Pappas LM, Stroup AM, Schwartz MD, Edwards SL, Rogers A, Kohlmann WK, Boucher KM, Vernon SW, Simmons RG, Lowery JT, Flores K, Wiggins CL, Hill DA, Burt RW, Williams MS, Higginbotham JC. Telehealth personalized cancer risk communication to motivate colonoscopy in relatives of patients with colorectal cancer: the family CARE randomized controlled trial. J Clin Oncol. 2014;32(7):654–62. https://doi.org/10.1200/JCO.2013.51.6765.CrossRefPubMedPubMedCentral

29.

Salimzadeh H, Khabiri R, Khazaee-Pool M, Salimzadeh S, Delavari A. Motivational interviewing and screening colonoscopy in high-risk individuals. A randomized controlled trial. Patient Educ Couns. 2018;101(6):1082–7. https://doi.org/10.1016/j.pec.2018.01.015.CrossRefPubMed

30.

Petersen HV, Frederiksen BL, Lautrup CK, Lindberg LJ, Ladelund S, Nilbert M. Unsolicited information letters to increase awareness of Lynch syndrome and familial colorectal cancer: reactions and attitudes. Familial Cancer. 2018:1–9. https://doi.org/10.1007/s10689-018-0083-5.CrossRef

Title: Examining intrafamilial communication of colorectal cancer risk status to family members and kin responses to colonoscopy: a qualitative study
Authors: Kaitlin M. McGarragle
Crystal Hare
Spring Holter
Dorian Anglin Facey
Kelly McShane
Steven Gallinger
Tae L. Hart
Publication date: 01-12-2019
Publisher: BioMed Central
Keywords: Colonoscopy
Colorectal Cancer
Colorectal Cancer
Published in: Hereditary Cancer in Clinical Practice / Issue 1/2019
Electronic ISSN: 1897-4287
DOI: https://doi.org/10.1186/s13053-019-0114-8

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

Background

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2019

Diagnostic yield and clinical utility of a comprehensive gene panel for hereditary tumor syndromes

Allelic variants of breast cancer susceptibility genes PALB2 and RECQL in the Latvian population

Genetic counselling and personalised risk assessment in the Australian pancreatic cancer screening program

A family pedigree of malignancies associated with BRCA1 pathogenic variants: a reflection of the state of art in China

The association between non-breast and ovary cancers and BRCA mutation in first- and second-degree relatives of high-risk breast cancer patients: a large-scale study of Koreans

Single-center study of Lynch syndrome screening in colorectal polyps

Keynote webinar | Spotlight on antibody–drug conjugates in cancer