Literature DB >> 30259397

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

Ilana Solomon1, Christina Rybak1, Lily Van Tongeren1, Lili Kuzmich1, Kathleen Blazer1, Bita Nehoray1, Mariana Niell-Swiller1, Shawnie Bray2, Travis H Bray2, Karen Hurley3, Jeffrey N Weitzel4, Thomas P Slavin5.   

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.

Entities:  

Keywords:  Familial adenomatous polyposis; Genetic counseling; Lynch syndrome; Patient conference; Patient support

Year:  2019        PMID: 30259397      PMCID: PMC6437007          DOI: 10.1007/s13187-018-1430-9

Source DB:  PubMed          Journal:  J Cancer Educ        ISSN: 0885-8195            Impact factor:   2.037


  18 in total

1.  Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.

Authors:  Erna Claes; Gerry Evers-Kiebooms; Andrea Boogaerts; Marleen Decruyenaere; Lieve Denayer; Eric Legius
Journal:  Am J Med Genet A       Date:  2003-01-01       Impact factor: 2.802

Review 2.  Psychosocial Impact of Lynch Syndrome on Affected Individuals and Families.

Authors:  Polymnia Galiatsatos; Heidi Rothenmund; Sylvie Aubin; William D Foulkes
Journal:  Dig Dis Sci       Date:  2015-03-19       Impact factor: 3.199

Review 3.  Psychological implications of living with familial adenomatous polyposis.

Authors:  E Claes; M Renson; A Delespesse; V De Hoe; G Haelterman; A Kartheuser; E Van Cutsem
Journal:  Acta Gastroenterol Belg       Date:  2011-09       Impact factor: 1.316

4.  Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program's experience.

Authors:  Josephine Wagner Costalas; Mark Itzen; John Malick; James S Babb; Betsy Bove; Andrew K Godwin; Mary B Daly
Journal:  Am J Med Genet C Semin Med Genet       Date:  2003-05-15       Impact factor: 3.908

5.  Long-term psychosocial and behavioral adjustment in individuals receiving genetic test results in Lynch syndrome.

Authors:  M J Esplen; J Wong; M Aronson; K Butler; H Rothenmund; K Semotiuk; L Madlensky; C Way; E Dicks; J Green; S Gallinger
Journal:  Clin Genet       Date:  2014-10-28       Impact factor: 4.438

6.  Cancer patients who experienced diagnostic genetic testing for cancer susceptibility: reactions and behavior after the disclosure of a positive test result.

Authors:  Valérie Bonadona; Pierre Saltel; Françoise Desseigne; Hervé Mignotte; Jean-Christophe Saurin; Qing Wang; Olga Sinilnikova; Sophie Giraud; Gilles Freyer; Henri Plauchu; Alain Puisieux; Christine Lasset
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2002-01       Impact factor: 4.254

7.  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.

Authors:  Deborah J Macdonald; Julia Deri; Charité Ricker; Martin A Perez; Raquel Ogaz; Nancy Feldman; Lori A Viveros; Benjamin Paz; Jeffrey N Weitzel; Kathleen R Blazer
Journal:  Fam Cancer       Date:  2012-09       Impact factor: 2.375

Review 8.  Developing and systematically implementing participatory action research.

Authors:  Glen W White; Monika Suchowierska; Margaret Campbell
Journal:  Arch Phys Med Rehabil       Date:  2004-04       Impact factor: 3.966

Review 9.  Screening in GI Cancers: The Role of Genetics.

Authors:  Elena M Stoffel
Journal:  J Clin Oncol       Date:  2015-04-27       Impact factor: 44.544

10.  Psychological distress and use of psychosocial support in familial adenomatous polyposis.

Authors:  Kirsten F L Douma; Neil K Aaronson; Hans F A Vasen; Miranda A Gerritsma; Chad M Gundy; Esther P A Janssen; Annette H J T Vriends; Annemieke Cats; Senno Verhoef; Eveline M A Bleiker
Journal:  Psychooncology       Date:  2010-03       Impact factor: 3.894

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  1 in total

1.  Family care and subjective well-being of coronary heart disease patients after percutaneous coronary intervention: Mediating effects of coping strategies.

Authors:  Li-Xia Liang; Yu Liu; Ya-Jie Shi; Tong-Tong Jiang; Hong-Ru Zhang; Bing-Han Liu; Peng-Zhu Xu; Tie-Ying Shi
Journal:  Int J Nurs Sci       Date:  2021-09-18
  1 in total

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