Leininger, Anna M

Resner, Mia

Zabel, Carrie A

Hereditary Cancer in Clinical Practice

English

PubMed

Anna M Leininger

Mia Resner

Carrie A Zabel

Springer - Publisher Connector

POSTER PRESENTATION Open Access
Assessing and addressing ongoing information
and support needs among individuals with
Lynch syndrome
Anna M Leininger1,2*, Mia Resner3, Carrie A Zabel3
From 14th Annual Meeting of the Collaborative Group of the Americas on Inherited Colorectal Cancer
Dallas, TX, USA. 12-13 October 2010
Background
In 2008, Lynch syndrome patients requested referrals to
a support organization, prompting the authors to assess
available resources. While general information about
Lynch syndrome was readily available from multiple
sources including the internet, updated, detailed infor-
mation and psychosocial support was largely unavailable.
Based on patient responses to a subsequent needs
assessment, an annual patient-oriented conference was
organized. We report the results of the needs assess-
ment and response to the conferences.
Materials and methods
Five individuals with a diagnosis or family history of
Lynch syndrome responded to a series of 20 questions
intended to assess information and support needs as
well as interest in attending a group meeting specific to
Lynch syndrome. One participant provided a written
response and four provided answers via telephone con-
versation. Responses were transcribed and reviewed for
common elements.
Results
Responders indicated interest in gathering with other
people for the purpose of receiving updated information
and support. Patient-identified areas of interest formed
the basis of two (2009, 2010) 1-day, patient/family
oriented conferences specific to Lynch syndrome.
Responders identified 3 broad areas of common inter-
est. These included 1) medical updates, including a
desire for access to detailed information about cancer
risk and risk reduction strategies as well as assistance or
advice on assembling a knowledgeable health care team,
2) shared experiences, expressing desire for an interac-
tive forum for discussion of topics relevant and specific
to people with Lynch syndrome and 3) psychosocial
impact, including family dynamics, uncertainty, commu-
nication and general coping.
Thirty people attended the 2009 conference and forty-
three attended the 2010 conference. Evaluations
indicated a high level of satisfaction overall, with open-
ended comments particularly in the areas of shared
experiences and access to detailed, updated information.
People requested additional conferences and longer
meeting times. At least 3 individuals sought additional
genetic counseling for themselves or family members
after the conference.
Conclusions
• Individuals and families with Lynch syndrome are
seeking additional educational opportunities and psycho-
social support resources post-genetic counseling.
• There is sufficient need and interest among this
patient population to justify providing an organized
venue for specific, detailed, updated information and
psychosocial support.
• Evaluations indicate that the annual conferences
were well-received and met the stated education and
support goals.
Acknowledgements
The authors thank the Mayo Clinic George M. Eisenberg Genomics
Education Program, Mayo Clinic Colon Family Registry, HealthEast Cancer
Care and the William C. Bernstein Cancer Family Registry for their support of
this study and educational event.* Correspondence: leini018@umn.edu1HealthEast Cancer Care, Cancer Genetics Clinic, St. John’s Hospital,
Maplewood, MN, USA
Full list of author information is available at the end of the article
Leininger et al. Hereditary Cancer in Clinical Practice 2011, 9(Suppl 1):P20
http://www.hccpjournal.com/content/9/S1/P20
© 2011 Leininger et al; licensee BioMed Central Ltd. 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.
Author details
1HealthEast Cancer Care, Cancer Genetics Clinic, St. John’s Hospital,
Maplewood, MN, USA. 2William C Bernstein, MD Familial Cancer Registry,
University of Minnesota, Minneapolis, MN, USA. 3Mayo Clinic, Rochester, MN,
USA.
Published: 10 March 2011
doi:10.1186/1897-4287-9-S1-P20
Cite this article as: Leininger et al.: Assessing and addressing ongoing
information and support needs among individuals with
Lynch syndrome. Hereditary Cancer in Clinical Practice 2011 9(Suppl 1):P20.
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Leininger et al. Hereditary Cancer in Clinical Practice 2011, 9(Suppl 1):P20
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Assessing and addressing ongoing information and support needs among individuals with Lynch syndrome

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