Experience Gained from the Development and Execution of a Multidisciplinary Multi-syndrome Hereditary Colon Cancer Family Conference.
Familial adenomatous polyposis
Genetic counseling
Lynch syndrome
Patient conference
Patient support
Journal
Journal of cancer education : the official journal of the American Association for Cancer Education
ISSN: 1543-0154
Titre abrégé: J Cancer Educ
Pays: England
ID NLM: 8610343
Informations de publication
Date de publication:
Dec 2019
Dec 2019
Historique:
pubmed:
28
9
2018
medline:
23
7
2020
entrez:
28
9
2018
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 30259397
doi: 10.1007/s13187-018-1430-9
pii: 10.1007/s13187-018-1430-9
pmc: PMC6437007
mid: NIHMS1508203
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1204-1212Subventions
Organisme : NCI NIH HHS
ID : K08 CA234394
Pays : United States
Organisme : NCI NIH HHS
ID : P30 CA033572
Pays : United States
Organisme : NCI NIH HHS
ID : P30CA033572
Pays : United States
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