Education Activities:
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Program Faculty:
Jessica Allen, PhD
Assistant Professor of Psychology Birmingham-Southern College Birmingham, AL Claire Brandon, MD Founder, CEO, Psychiatrist Whole Body Psychiatry New York City, NY Shannon Chang, MD, MBA Associate Professor of Medicine, Gastroenterologist Director of Clinical Operations, Inflammatory Bowel Disease Center NYU Langone Health New York City, NY Debora Duro, MD Program Director, Pediatric GI Nutrition Broward Health Fort Lauderdale, FL Shannon Hourigan, PhD, MS Staff Psychologist Boston Children’s Hospital Boston, MA |
Swapna Kakani, MPH
SBS Patient & Healthcare Advocate Ashley Roberge, MSW, LCSW Licensed Clinical Social Worker Boston Children’s Hospital Boston, MA Michele Rubin, MSN, APN, CNS, CGRN Associate Director, IBD Center University of Chicago Chicago, IL Jacklyn Stellway, PsyD Assistant Professor, Department of Pediatrics Oregon Health & Science University Portland, OR Marion F. Winkler, PhD, RD, LDN, CNSC Surgical Nutrition Specialist, Professor of Surgery Rhode Island Hospital Providence, RI |
Resources:
the gutsy perspective
thegutsyperspective.org
Oley Foundation
oley.org
International Foundation for Gastrointestinal Disorders
iffgd.org
Necrotizing Enterocolitis (NEC) Society
necsociety.org
Intestinal Malrotation Foundation
intestinalmalrotation.com
Global Gastroschisis Foundation / Avery's Angels
averysangels.org
Crohn's & Colitis Foundation
crohnscolitisfoundation.org
Rome GastroPsych group (Rome Foundation)
theromefoundation.org/rome-gi-psych-committee/
AGA Guideline: Management of Short Bowel Syndrome (SBS)
gastro.org/clinical-guidance/management-of-short-bowel-syndrome-sbs/
thegutsyperspective.org
Oley Foundation
oley.org
International Foundation for Gastrointestinal Disorders
iffgd.org
Necrotizing Enterocolitis (NEC) Society
necsociety.org
Intestinal Malrotation Foundation
intestinalmalrotation.com
Global Gastroschisis Foundation / Avery's Angels
averysangels.org
Crohn's & Colitis Foundation
crohnscolitisfoundation.org
Rome GastroPsych group (Rome Foundation)
theromefoundation.org/rome-gi-psych-committee/
AGA Guideline: Management of Short Bowel Syndrome (SBS)
gastro.org/clinical-guidance/management-of-short-bowel-syndrome-sbs/
Publications:
A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing
https://www.sciencedirect.com/science/article/pii/S0022346821006564
Quality of life in short-bowel syndrome: impact of fatigue and gastrointestinal symptoms
https://pubmed.ncbi.nlm.nih.gov/18609190/
Short bowel syndrome and the impact on patients and their families: a qualitative study
https://onlinelibrary.wiley.com/doi/10.1111/jhn.12803
Significant stress in parents of children with short bowel syndrome undergoing intestinal rehabilitation: Considerations for care.
https://psycnet.apa.org/doiLanding?doi=10.1037/cpp0000422
Advocating for a patient- and family centered care approach to management of short bowel syndrome
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/ncp.10966
Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/ncp.11008
Stress, anxiety, depression, and health-related quality of life in caregivers of children with intestinal failure receiving parenteral nutrition: A cross-sectional survey study
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/jpen.2461
Optimizing transition from pediatric to adult care in short bowel syndrome and intestinal failure
aspenjournals.onlinelibrary.wiley.com/doi/10.1002/jpen.2499
Impact of Teduglutide on Quality of Life Among Patients With Short Bowel Syndrome and Intestinal Failure
aspenjournals.onlinelibrary.wiley.com/doi/10.1002/jpen.1588
Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/ncp.10964
Impact on caregivers of adult patients receiving parenteral support for short-bowel syndrome with intestinal failure: A multinational, cross-sectional survey
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/jpen.2248
https://www.sciencedirect.com/science/article/pii/S0022346821006564
Quality of life in short-bowel syndrome: impact of fatigue and gastrointestinal symptoms
https://pubmed.ncbi.nlm.nih.gov/18609190/
Short bowel syndrome and the impact on patients and their families: a qualitative study
https://onlinelibrary.wiley.com/doi/10.1111/jhn.12803
Significant stress in parents of children with short bowel syndrome undergoing intestinal rehabilitation: Considerations for care.
https://psycnet.apa.org/doiLanding?doi=10.1037/cpp0000422
Advocating for a patient- and family centered care approach to management of short bowel syndrome
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/ncp.10966
Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/ncp.11008
Stress, anxiety, depression, and health-related quality of life in caregivers of children with intestinal failure receiving parenteral nutrition: A cross-sectional survey study
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/jpen.2461
Optimizing transition from pediatric to adult care in short bowel syndrome and intestinal failure
aspenjournals.onlinelibrary.wiley.com/doi/10.1002/jpen.2499
Impact of Teduglutide on Quality of Life Among Patients With Short Bowel Syndrome and Intestinal Failure
aspenjournals.onlinelibrary.wiley.com/doi/10.1002/jpen.1588
Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/ncp.10964
Impact on caregivers of adult patients receiving parenteral support for short-bowel syndrome with intestinal failure: A multinational, cross-sectional survey
aspenjournals.onlinelibrary.wiley.com/doi/full/10.1002/jpen.2248