| Autor: |
Laynie Dratch, Weiyi Mu, Elisabeth McCarty Wood, Brianna Morgan, Lauren Massimo, Cynthia Clyburn, Tanya Bardakjian, Murray Grossman, David J. Irwin, Katheryn A.Q. Cousins |
| Jazyk: |
angličtina |
| Rok vydání: |
2023 |
| Předmět: |
|
| Zdroj: |
PEC Innovation, Vol 2, Iss , Pp 100108- (2023) |
| Druh dokumentu: |
article |
| ISSN: |
2772-6282 |
| DOI: |
10.1016/j.pecinn.2022.100108 |
| Popis: |
Objective: There are limited studies exploring the support and education needs of individuals at-risk for or diagnosed with hereditary frontotemporal degeneration (FTD) and/or amyotrophic lateral sclerosis (ALS). This study evaluated a novel conference for this population to assess conference efficacy, probe how participants assessed relevant resources, and identify outstanding needs of persons at-risk/diagnosed. Methods: We implemented a post-conference electronic survey that probed participants' satisfaction, prior experience with resources, and unmet needs. Along with multiple-choice, free-text items were included to gather qualitative context. Results: Survey completion rate was 31% (115/376 attendees who were emailed the survey). There was positive interest in pursuing genetic counseling among eligible responders: 61% indicated they planned to seek genetic counseling because of the conference, which was significantly more than those who were undecided (21%) or did not plan to seek genetic counseling (18%). Qualitative data demonstrated need for additional education, support, and research opportunities. Conclusion: Conference reactions indicate this is a valued resource. Results indicated the importance of raising awareness about existing resources, and the need for further resource development, especially for at-risk communities. Innovation: While most resources are developed for caregivers' needs, this unique program targets at-risk individuals and unites ALS and FTD communities. |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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