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Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group

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Journal of Genetic Counseling

Abstract

Few reports of educational and counseling support resources exist for Lynch syndrome (LS), a disorder requiring multi-organ cancer screening and specialized medical care throughout adult life. Here we describe the development and efficacy of two resources designed to address this need, the Memorial Sloan Kettering Cancer Center Clinical Genetics Service annual Lynch Syndrome Educational Workshop (LSEW), and a quarterly Lynch Syndrome Patient Advocacy Network (LSPAN) support group. The LSEW and LSPAN were implemented beginning in 2012. Participant survey data evaluating satisfaction, clarity, and unmet needs for each event were retrospectively analyzed and summarized using descriptive statistics. Annual LSEW attendance ranged from 53 to 75 total participants. LSEW year 1 participants indicated a need for a support group, and preferred in-person meetings at a frequency of every 3–6 months. For LSEW year 2–5 participants, >96 % reported satisfaction with the LSEW, and >82 % expressed interest in secure online support. Common themes for improvement included increased time for question and answer sessions and additional introductory genetics education. Responding LSPAN participants (n = 57 total survey responses in 11 meetings) found the meetings helpful (100 %), information clear (91 %), and presence of a genetic counselor useful (67 %). Desired discussion topics included coping with stress and anxiety, development of a support network, family communication about LS, genetic testing decisions, and bereavement. Following genetic counseling, a need exists for ongoing educational and emotional support in LS. Implementation of resources such as the LSEW and LSPAN is feasible and perceived as helpful by participants.

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Acknowledgments

We would like to thank our patients and their families for participating in the LSEW and LSPAN, and for their valuable feedback. We also thank the Robert and Kate Niehaus Clinical Cancer Genetics Initiative at MSKCC and The Romeo Milio Lynch Syndrome Foundation for supporting this work. This research was funded in part through the NIH/NCI Cancer Center Support Grant P30 CA008748.

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Authors and Affiliations

  1. Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA

    Marina J. Corines, Emily Glogowski, Erin Salo-Mullen, Megan Harlan, Margaret R. Sheehan, Magan Trottier, Asad Ahsraf, Christina Tran, Lauren Jacobs, Rohini Rau-Murthy, Anne G. Lincoln, Mark E. Robson, Arnold J. Markowitz, Kenneth Offit & Zsofia K. Stadler

  2. Weill Cornell Medical College, New York, NY, USA

    Jada G. Hamilton, Mark E. Robson, Jose G. Guillem, Arnold J. Markowitz, Kenneth Offit & Zsofia K. Stadler

  3. Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Jada G. Hamilton

  4. Department of Social Work, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Chris A. Anrig & Rachael Goldberg

  5. Patient and Family Advisory Council, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Kate Niehaus

  6. Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Jose G. Guillem

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  1. Marina J. Corines
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  2. Jada G. Hamilton
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  3. Emily Glogowski
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  6. Kate Niehaus
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  7. Erin Salo-Mullen
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  18. Arnold J. Markowitz
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  19. Kenneth Offit
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  20. Zsofia K. Stadler
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Correspondence to Zsofia K. Stadler.

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Conflicts of Interest

Marina J. Corines, Jada G. Hamilton, Emily Glogowski, Chris A. Anrig, Rachael Goldberg, Kate Niehaus, Erin Salo-Mullen, Megan Harlan, Margaret R. Sheehan, Magan Trottier, Asad Ahsraf, Christina Tran, Lauren Jacobs, Rohini Rau-Murthy, Anne G. Lincoln, Mark E. Robson, Jose G. Guillem, Arnold J. Markowitz, Kenneth Offit, and Zsofia K. Stadler declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). For this type of study formal consent is not required.

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Corines, M.J., Hamilton, J.G., Glogowski, E. et al. Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group. J Genet Counsel 26, 232–243 (2017). https://doi.org/10.1007/s10897-016-0015-1

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