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Assessing and addressing ongoing information and support needs among individuals with Lynch syndrome

Authors
Publisher
BioMed Central
Publication Date
Volume
9
Identifiers
DOI: 10.1186/1897-4287-9-s1-p20
Keywords
  • Poster Presentation
Disciplines
  • Medicine

Abstract

Assessing and addressing ongoing information and support needs among individuals with Lynch syndrome 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

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