how long until truly gluten-free? · 2019-08-09 · results • 137 completed surveys • the...
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HOW LONG UNTIL TRULY GLUTEN-FREE?
A TIMELINE FOR SELF-MANAGEMENT SKILL ACQUISITION IN ADULTS WITH CELIAC DISEASE
Emma M. ClerxNational Celiac Association Fall Meeting
10/29/2017
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A LITTLE BIT ABOUT ME
• Junior at Harvard University• Studying Biology, Global Health & Health Policy, and Spanish
• Second summer spent researching celiac disease at BIDMC thanks to NCA’s generous intern scholarship• True passion for this research
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SUMMER 2017 EXPERIENCES AT THE CELIAC CENTER AT BIDMC
• Shadowing at celiac GI clinic visits and nutrition counseling appointments• More insight into the integral nature of both GI and nutrition &
the way in which they interact in clinical management of celiac disease
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SUMMER 2017 EXPERIENCES AT THE CELIAC CENTER AT BIDMC
• Adapting the Mediterranean Diet for celiacs Melinda Dennis
• Gluten-Free Version to be given to patients in clinic
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SUMMER 2017 EXPERIENCES AT THE CELIAC CENTER AT BIDMC
• Patient consulting and visualizing the future of celiac therapies with Takeda’s GI department, Snow Companies, and IDEO• Value of patient perspectives when developing treatments
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NCA’S INTEGRAL SUPPORT
• None of this would be possible without NCA’s integral support for which I am beyond grateful• Connection to a supportive community makes this work meaningful and pushes me to work
even harder
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QUESTION OF INTEREST • Can we create a timeline for the acquisition of self-management skills
necessary for celiac disease management and gluten-free diet (GFD) adherence? • Will various demographic factors influence the rate of acquisition?
• Motivation: To better inform clinical practices for care of celiac patients and, ultimately, to improve their quality of life
Source: https://www.aatmastudio.com/medical-animation/medical-animation-videos-will-improve-informed-consent-process/
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METHODS• Adults celiac patients completed an anonymous survey during an outpatient
follow-up clinic visit• Survey items included: assessment of the rate at which various skills relating to maintenance
of the GFD were mastered and demographic information
• Data analysis was performed using R statistical software in RStuido
Source: https://www.nkcf.org/2016-patient-experience-survey/
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RESULTS• 137 completed surveys
• The majority of participants had biopsy-proven CD (87%)
• Median current age was 38 years (IQR 28-58); median age at diagnosis was 35 years (IQR 23-50); median years that participants had spent on the GFD was 5 (IQR 2-7)
• Participants were primarily fully-employed (60%), married (51%), and female (79%)
• Many participants reported a household member with a related disease managed by diet: celiac disease (23%), diabetes (15%), food allergy (19%)
• The majority (82%) primarily experienced gastrointestinal symptoms
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RESULTS (CONTINUED…)
• Skills involving identifying gluten-
containing versus gluten-free foods
required <6 months for most participants to master
• Explaining CD and the GFD to others and
assessing risk of gluten exposure outside the home required 1-2 years for most to learn
• Learning to identify gluten in medications and supplements required 3-5 years.
• Traveling internationally and domestically while maintaining GFD adherence required >5 years to learn or was not yet fully mastered
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NATURAL SEQUENCE FOR LEARNING RELEVANT SELF-MANAGEMENT SKILLS IN CELIAC DISEASE
HOME
SOCIAL SETTINGS
WORKPLACE
UNFAMILIAR SETTINGS/
TRAVEL
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IMPLICATIONS OF THIS RESEARCH
• Implications for clinical management of celiac disease• Timeline for learning relevant skills/milestones
• Repeat biopsies and rate of mucosal recovery
Source: http://www.openaccessbooks.com/2013/03/textbook-endoscopy-of-gi-tract.html
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IMPLICATIONS OF THIS RESEARCH (CONTINUED)
• Emphasizes shortcomings of gluten-free diet (GFD)
• Underscores need for alternate treatment options
• Highlights need for targeted education from physicians and dietitians—extending beyond basic identification of gluten-containing versus gluten-free foods
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IMPLICATIONS OF THIS RESEARCH (CONTINUED)
• Ultimately we hope that knowledge of the proposed timeline for learning self-management skills, along with targeted education in areas that have been highlighted as difficult to master, will lead to:• Faster learning rates
• Faster healing rates
• Improved quality of life for celiac patients
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LOOKING AHEAD
• Continued fascination with celiac disease • Social, medical, nutritional, cultural contexts
• Connection with community of celiacs and their unique challenges
• Varied experiences at BIDMC• Grateful for the additional time spent in nutrition
• Thankful especially for the continued experiences in research
• Expanding into my current coursework at college• Harvard School of Public Health Nutrition Course
• Biology Seminars
• Interest in Public Health Nutrition
• Stress and GI disorders
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ACKNOWLEDGEMENTS • Dr. Dan Leffler
• Dr. Jocelyn Silvester
• Celiac Center and Kelly Lab at BIDMC
• Dr. Laurie Fishman & the Celiac Group at Boston Children’s Hospital
• National Celiac Association’s Research Fellowship in celiac disease
• Especially Ms. Lee Graham & all of you!
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THANK YOU!