Cargando…
Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference
BACKGROUND: Patients with Lynch Syndrome, the most common hereditary colorectal cancer syndrome, benefit from genetic education and family counseling regarding diagnostic testing and cancer surveillance/prevention recommendations. Although genetic counseling is currently the most common venue where...
Autores principales: | , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2014
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3922108/ https://www.ncbi.nlm.nih.gov/pubmed/24499499 http://dx.doi.org/10.1186/1897-4287-12-1 |
_version_ | 1782303411177259008 |
---|---|
author | Bannon, Sarah A Mork, Maureen Vilar, Eduardo Peterson, Susan K Lu, Karen Lynch, Patrick M Rodriguez-Bigas, Miguel A You, YiQian Nancy |
author_facet | Bannon, Sarah A Mork, Maureen Vilar, Eduardo Peterson, Susan K Lu, Karen Lynch, Patrick M Rodriguez-Bigas, Miguel A You, YiQian Nancy |
author_sort | Bannon, Sarah A |
collection | PubMed |
description | BACKGROUND: Patients with Lynch Syndrome, the most common hereditary colorectal cancer syndrome, benefit from genetic education and family counseling regarding diagnostic testing and cancer surveillance/prevention recommendations. Although genetic counseling is currently the most common venue where such education and counseling takes place, little is known about the level of disease knowledge and education needs as directly reported by patients and families with Lynch Syndrome. Furthermore, experiences with forums for larger-scale knowledge transfer have been limited in the current literature. METHODS: We conducted a one-day interactive multidisciplinary patient conference, designed to complement individual genetic counseling for updating disease knowledge, supportive networking and needs assessment among Lynch Syndrome patients and their family members. The patient conference was designed utilizing the conceptual framework of action research. Paired pre- and post-conference surveys were administered to 44 conference participants anonymously to assess patient-reported disease knowledge and education needs. RESULTS: A multidisciplinary team of expert providers utilized a variety of educational formats during the one-day conference. Four main focus areas were: genetic testing, surveillance/prevention, living with Lynch Syndrome, and update on research. Thirty-two participants (73%) completed the pre-conference, and 28 (64%) participants completed the post-conference surveys. Nineteen respondents were affected and the remaining were unaffected. The scores of the disease-knowledge items significantly increased from 84% pre- to 92% post-conference (p = 0.012). Patients reported a high level of satisfaction and identified further knowledge needs in nutrition (71%), surveillance/prevention options (71%), support groups (36%), cancer risk assessment (32%), active role in medical care (32%), and research opportunities (5%). CONCLUSION: Our experience with a dedicated patient education conference focused on Lynch Syndrome demonstrated that such an educational format is effective for updating or reinforcing disease knowledge, for identifying patient-reported unmet educational needs, as well as for peer-support. |
format | Online Article Text |
id | pubmed-3922108 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2014 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-39221082014-02-13 Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference Bannon, Sarah A Mork, Maureen Vilar, Eduardo Peterson, Susan K Lu, Karen Lynch, Patrick M Rodriguez-Bigas, Miguel A You, YiQian Nancy Hered Cancer Clin Pract Research BACKGROUND: Patients with Lynch Syndrome, the most common hereditary colorectal cancer syndrome, benefit from genetic education and family counseling regarding diagnostic testing and cancer surveillance/prevention recommendations. Although genetic counseling is currently the most common venue where such education and counseling takes place, little is known about the level of disease knowledge and education needs as directly reported by patients and families with Lynch Syndrome. Furthermore, experiences with forums for larger-scale knowledge transfer have been limited in the current literature. METHODS: We conducted a one-day interactive multidisciplinary patient conference, designed to complement individual genetic counseling for updating disease knowledge, supportive networking and needs assessment among Lynch Syndrome patients and their family members. The patient conference was designed utilizing the conceptual framework of action research. Paired pre- and post-conference surveys were administered to 44 conference participants anonymously to assess patient-reported disease knowledge and education needs. RESULTS: A multidisciplinary team of expert providers utilized a variety of educational formats during the one-day conference. Four main focus areas were: genetic testing, surveillance/prevention, living with Lynch Syndrome, and update on research. Thirty-two participants (73%) completed the pre-conference, and 28 (64%) participants completed the post-conference surveys. Nineteen respondents were affected and the remaining were unaffected. The scores of the disease-knowledge items significantly increased from 84% pre- to 92% post-conference (p = 0.012). Patients reported a high level of satisfaction and identified further knowledge needs in nutrition (71%), surveillance/prevention options (71%), support groups (36%), cancer risk assessment (32%), active role in medical care (32%), and research opportunities (5%). CONCLUSION: Our experience with a dedicated patient education conference focused on Lynch Syndrome demonstrated that such an educational format is effective for updating or reinforcing disease knowledge, for identifying patient-reported unmet educational needs, as well as for peer-support. BioMed Central 2014-02-05 /pmc/articles/PMC3922108/ /pubmed/24499499 http://dx.doi.org/10.1186/1897-4287-12-1 Text en Copyright © 2014 Bannon et al.; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Bannon, Sarah A Mork, Maureen Vilar, Eduardo Peterson, Susan K Lu, Karen Lynch, Patrick M Rodriguez-Bigas, Miguel A You, YiQian Nancy Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference |
title | Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference |
title_full | Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference |
title_fullStr | Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference |
title_full_unstemmed | Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference |
title_short | Patient-reported disease knowledge and educational needs in Lynch syndrome: findings of an interactive multidisciplinary patient conference |
title_sort | patient-reported disease knowledge and educational needs in lynch syndrome: findings of an interactive multidisciplinary patient conference |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3922108/ https://www.ncbi.nlm.nih.gov/pubmed/24499499 http://dx.doi.org/10.1186/1897-4287-12-1 |
work_keys_str_mv | AT bannonsaraha patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference AT morkmaureen patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference AT vilareduardo patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference AT petersonsusank patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference AT lukaren patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference AT lynchpatrickm patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference AT rodriguezbigasmiguela patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference AT youyiqiannancy patientreporteddiseaseknowledgeandeducationalneedsinlynchsyndromefindingsofaninteractivemultidisciplinarypatientconference |