title: Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group.
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.
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Marina J
authors.initials: MJ
authors.lastname: Corines
authors.affiliation: Weill Cornell Medical College, New York, NY, USA.|Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
authors.forename: Jada G
authors.initials: JG
authors.lastname: Hamilton
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Glogowski
authors.affiliation: Department of Social Work, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
authors.forename: Chris A
authors.initials: CA
authors.lastname: Anrig
authors.affiliation: Department of Social Work, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
authors.forename: Rachael
authors.initials: R
authors.lastname: Goldberg
authors.affiliation: Patient and Family Advisory Council, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
authors.forename: Kate
authors.initials: K
authors.lastname: Niehaus
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Erin
authors.initials: E
authors.lastname: Salo-Mullen
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Megan
authors.initials: M
authors.lastname: Harlan
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Margaret R
authors.initials: MR
authors.lastname: Sheehan
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Magan
authors.initials: M
authors.lastname: Trottier
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Asad
authors.initials: A
authors.lastname: Ahsraf
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Christina
authors.initials: C
authors.lastname: Tran
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Lauren
authors.initials: L
authors.lastname: Jacobs
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Rohini
authors.initials: R
authors.lastname: Rau-Murthy
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.
authors.forename: Anne G
authors.initials: AG
authors.lastname: Lincoln
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.|Weill Cornell Medical College, New York, NY, USA.
authors.forename: Mark E
authors.initials: ME
authors.lastname: Robson
authors.affiliation: Weill Cornell Medical College, New York, NY, USA.|Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
authors.forename: Jose G
authors.initials: JG
authors.lastname: Guillem
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.|Weill Cornell Medical College, New York, NY, USA.
authors.forename: Arnold J
authors.initials: AJ
authors.lastname: Markowitz
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA.|Weill Cornell Medical College, New York, NY, USA.
authors.forename: Kenneth
authors.initials: K
authors.lastname: Offit
authors.affiliation: Department of Medicine, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, Box 295, New York, NY, 10065, USA. stadlerz@mskcc.org.|Weill Cornell Medical College, New York, NY, USA. stadlerz@mskcc.org.
authors.forename: Zsofia K
authors.initials: ZK
authors.lastname: Stadler
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001007:Anxiety; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000150:complications / Q000523:psychology*; D055088:Early Detection of Cancer; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000175:diagnosis; D010353:Patient Education as Topic; D010361:Patients / Q000523:psychology*; D000072858:Psychosocial Support Systems; D012657:Self-Help Groups; D011795:Surveys and Questionnaires
keywords: Colorectal cancer; Family support; Genetic counseling; Hereditary cancer; Lynch syndrome