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Journal of Cancer Education

, Volume 34, Issue 6, pp 1204–1212 | Cite as

Experience Gained from the Development and Execution of a Multidisciplinary Multi-syndrome Hereditary Colon Cancer Family Conference

  • Ilana Solomon
  • Christina Rybak
  • Lily Van Tongeren
  • Lili Kuzmich
  • Kathleen Blazer
  • Bita Nehoray
  • Mariana Niell-Swiller
  • Shawnie Bray
  • Travis H. Bray
  • Karen Hurley
  • Jeffrey N. WeitzelEmail author
  • Thomas P. SlavinEmail author
Article

Abstract

Genetic healthcare professionals provide genetic cancer risk assessment and follow-up care for patients facing hereditary cancers. To meet the needs of those affected by hereditary colorectal cancer, City of Hope and the Hereditary Colon Cancer Foundation collaborated to develop a “Family Day” conference. We describe the development of our conference based upon the Hereditary Colon Cancer Foundation’s “Family Day” program model, with refinements completed using the Participatory Action Research theoretical framework, which incorporated input from conference participants and researchers. Thirty-one participants attended the conference, representing patients with, or families, friends, and caregivers of those with, multiple colorectal cancer predisposition syndromes, including Lynch, familial adenomatous polyposis, and juvenile polyposis. Participants who completed the feedback surveys (n = 22) were highly satisfied with the presentation content, ranking the keynote lecture on family communication the highest of the conference events. Participants also provided feedback regarding how to improve future conferences. In conclusion, we share our experience and provide guidance for developing a successful hereditary colon cancer predisposition patient and family conference.

Keywords

Patient conference Lynch syndrome Genetic counseling Familial adenomatous polyposis Patient support 

Notes

Acknowledgments

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number P30CA033572. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. Additional support was received from the Oxnard Foundation (PI: T. Slavin).

Compliance with Ethical Standards

Conflict of Interest

Shawnie Bray and Travis H. Bray are co-founders of the Hereditary Colon Cancer Foundation. Ilana Solomon, Christina Rybak, Lily Van Tongeren, Lili Kuzmich, Kathleen Blazer, Bita Nehoray, Mariana Niell-Swiller, Karen Hurley, Jeffrey N. Weitzel, and Thomas P. Slavin declare that they have no conflict of interest.

Human Studies and Informed Consent

Research participants included in this work were consented through an Institutional Review Board protocol through the City of Hope. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

References

  1. 1.
    Weitzel JN, Blazer KR, MacDonald DJ, Culver JO, Offit K (2011) Genetics, genomics and cancer risk assessment: state of the art and future directions in the era of personalized medicine. CA Cancer J Clin 61(5):327–359PubMedPubMedCentralGoogle Scholar
  2. 2.
    Riley BD, Culver JO, Skrzynia C, Senter LA, Peters JA, Costalas JW, Callif-Daley F, Grumet SC, Hunt KS, Nagy RS, McKinnon WC, Petrucelli NM, Bennett RL, Trepanier AM (2012) Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. J Genet Couns 21(2):151–161CrossRefGoogle Scholar
  3. 3.
    Cancer Stat Facts: Colorectal Cancer. https://seer.cancer.gov/statfacts/html/colorect.html
  4. 4.
    Stoffel EM (2015) Screening in GI cancers: the role of genetics. J Clin Oncol 33:1721–1728CrossRefGoogle Scholar
  5. 5.
    Douma KF, Aaronson NK, Vasen HF, Gerritsma MA, Gundy CM, Janssen EP, Vriends AH, Cats A, Verhoef S, Bleiker EM (2010) Psychological distress and use of psychosocial support in familial adenomatous polyposis. Psychooncology 19(3):289–298CrossRefGoogle Scholar
  6. 6.
    Mireskandari S, Sangster J, Meiser B, Thewes B, Groombridge C, Spigelman A, Andrews L (2009) Psychosocial impact of familial adenomatous polyposis on young adults: a qualitative study. J Genet Couns 18(5):409–417CrossRefGoogle Scholar
  7. 7.
    Aktan-Collan K, Kaariainen H, Jarvinen H, Peltomaki P, Pylvanainen K, Mecklin JP, Haukkala A (2013) Psychosocial consequences of predictive genetic testing for Lynch syndrome and associations to surveillance behaviour in a 7-year follow-up study. Familial Cancer 12(4):639–646CrossRefGoogle Scholar
  8. 8.
    Galiatsatos P, Rothenmund H, Aubin S, Foulkes WD (2015) Psychosocial impact of Lynch syndrome on affected individuals and families. Dig Dis Sci 60(8):2246–2250CrossRefGoogle Scholar
  9. 9.
    Gritz ER, Peterson SK, Vernon SW, Marani SK, Baile WF, Watts BG, Amos CI, Frazier ML, Lynch PM (2005) Psychological impact of genetic testing for hereditary nonpolyposis colorectal cancer. J Clin Oncol 23(9):1902–1910CrossRefGoogle Scholar
  10. 10.
    Claes E, Renson M, Delespesse A, De Hoe V, Haelterman G, Kartheuser A, Van Cutsem E (2011) Psychological implications of living with familial adenomatous polyposis. Acta Gastro-Enterol Belg 74(3):438–444Google Scholar
  11. 11.
    Esplen MJ, Wong J, Aronson M, Butler K, Rothenmund H, Semotiuk K, Madlensky L, Way C, Dicks E, Green J, Gallinger S (2015) Long-term psychosocial and behavioral adjustment in individuals receiving genetic test results in Lynch syndrome. Clin Genet 87(6):525–532CrossRefGoogle Scholar
  12. 12.
    Bonadona V, Saltel P, Desseigne F, Mignotte H, Saurin JC, Wang Q, Sinilnikova O, Giraud S, Freyer G, Plauchu H et al (2002) Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result. Cancer Epidemiol Biomark Prev 11(1):97–104Google Scholar
  13. 13.
    Wagner Costalas J, Itzen M, Malick J, Babb JS, Bove B, Godwin AK, Daly MB (2003) Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. Am J Med Genet C Semin Med Genet 119c(1):11–18CrossRefGoogle Scholar
  14. 14.
    Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E (2003) 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 116((1):11–19CrossRefGoogle Scholar
  15. 15.
    Hereditary Colon Cancer Takes Guts. http://www.hcctakesguts.org/
  16. 16.
    White GW, Suchowierska M, Campbell M (2004) Developing and systematically implementing participatory action research. Arch Phys Med Rehabil 85(4 Suppl 2):S3–S12CrossRefGoogle Scholar
  17. 17.
    Baum F, MacDougall C, Smith D (2006) Participatory action research. J Epidemiol Community Health 60(10):854–857CrossRefGoogle Scholar
  18. 18.
    MacDonald DJ, Deri J, Ricker C, Perez MA, Ogaz R, Feldman N, Viveros LA, Paz B, Weitzel JN, Blazer KR (2012) Closing the loop: an interactive action-research conference format for delivering updated medical information while eliciting Latina patient/family experiences and psychosocial needs post-genetic cancer risk assessment. Familial Cancer 11(3):449–458CrossRefGoogle Scholar
  19. 19.
    Espenschied CR, MacDonald DJ, Culver JO, Sand S, Hurley K, Banks KC, Weitzel JN, Blazer KR (2012) Closing the loop: action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs. J Cancer Educ 27(3):467–477CrossRefGoogle Scholar
  20. 20.
    Bannon SA, Mork M, Vilar E, Peterson SK, Lu K, Lynch PM, Rodriguez-Bigas MA, You YN (2014) Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference. Hered Cancer Clin Pract 12(1):1CrossRefGoogle Scholar

Copyright information

© American Association for Cancer Education 2018

Authors and Affiliations

  • Ilana Solomon
    • 1
  • Christina Rybak
    • 1
  • Lily Van Tongeren
    • 1
  • Lili Kuzmich
    • 1
  • Kathleen Blazer
    • 1
  • Bita Nehoray
    • 1
  • Mariana Niell-Swiller
    • 1
  • Shawnie Bray
    • 2
  • Travis H. Bray
    • 2
  • Karen Hurley
    • 3
  • Jeffrey N. Weitzel
    • 1
    Email author
  • Thomas P. Slavin
    • 1
    Email author
  1. 1.City of Hope, Division of Clinical Cancer GenomicsDuarteUSA
  2. 2.Hereditary Colon Cancer FoundationPortlandUSA
  3. 3.Cleveland ClinicClevelandUSA

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