Abstract Details

Title Awareness and Agreement with Neurofibromatosis Care Expert Recommendations among Neurofibromatosis Specialists

Topic Neuro-oncology

Presentation(s) Neuro-oncology Posters (7:00 AM-5:00 PM)

Poster/Presentation
Number 009

Objective To evaluate the level of awareness and agreement with published expert recommendations for neurofibromatosis (NF) care among NF specialists.

Background The neurofibromatoses are a group of rare genetic disorders that predispose patients to nerve sheath tumors as well as many other physical and constitutional manifestations. There are 7 published expert recommendation sets for NF care, consisting of 40 individual recommendations.

Design/Methods A survey was conducted using REDCap to assess awareness of existing NF expert recommendations, as well as level of agreement (5-point Likert scale) with individual published recommendations. Eligible participants were United States-based NF specialist clinicians who had previously registered for NF scientific meetings with the Children’s Tumor Foundation. The study was deemed exempt by the IRB at Partners Healthcare.

Results Sixty-three NF clinicians (49% female) responded to the survey, self-identifying within 9 different medical specialties. Eighty percent of respondents were in an academic practice and 62% were involved in NF therapeutic clinical trials. More respondents provided pediatric and NF1 care (87% pediatric NF1, 81% adult NF1, 76% pediatric NF2), than adult NF2 or schwannomatosis care (57% for both). Self-reported awareness of the 7 published recommendation sets ranged from 53% to 79% of respondents, and proportion of respondents who “strongly agree” with individual recommendations ranged from 17% to 83%. There were 16 recommendations with which less than 50% of respondents “strongly agree”. There were no significant differences in responses based on respondent demographics, practice type, or participation in research.

Conclusions

We identified wide variability in both awareness of, and agreement with, published NF care expert recommendations among NF experts. Future efforts should focus on consensus-based methods to update recommendations or to develop formal guidelines, and evaluation of strategies for broader dissemination of recommendations across this multi-specialty group. Patient and caregiver input should also be sought to assess any barriers to recommendation-driven care.

Authors/Disclosures
Justin T. Jordan, MD, MPH, FAAN PRESENTER	Dr. Jordan has received personal compensation for serving as an employee of City of Beverly. An immediate family member of Dr. Jordan has received personal compensation for serving as an employee of Dietitians on Demand. An immediate family member of Dr. Jordan has received personal compensation for serving as an employee of Genesis HR Solutions. Dr. Jordan has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Navio Theragnostics. Dr. Jordan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Recursion Pharmaceuticals, Inc. Dr. Jordan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Shepherd Therapeutics. Dr. Jordan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion Pharmaceuticals. Dr. Jordan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Akeila Bio. Dr. Jordan has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Springworks Therapeutics. Dr. Jordan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Merck Pharmaceuticals. Dr. Jordan has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Continental Casualty Company. Dr. Jordan has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for HennLesperance. Dr. Jordan has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Rhoades McKee. Dr. Jordan has received personal compensation in the range of $10,000-$49,999 for serving as an Expert Witness for Wheeler Trigg O'Donnell. Dr. Jordan has stock in Navio Theragnostics. Dr. Jordan has stock in The Doctor Lounge. An immediate family member of Dr. Jordan has stock in OldGate. Dr. Jordan has stock in Akeila Bio. Dr. Jordan has stock in Shepherd Therapeutics. Dr. Jordan has stock in Khora TX. The institution of Dr. Jordan has received research support from NIH. The institution of Dr. Jordan has received research support from Department of Defense. The institution of Dr. Jordan has received research support from PCORI. Dr. Jordan has received publishing royalties from a publication relating to health care. Dr. Jordan has a non-compensated relationship as a board member with United Council for Neurologic Subspecialties that is relevant to AAN interests or activities.
Vanessa Merker (Massachusetts General Hospital)	The institution of Vanessa Merker has received research support from Children's Tumor Foundation . The institution of Vanessa Merker has received research support from NF Northeast. The institution of Vanessa Merker has received research support from Patient Centered Outcomes Research Institute. The institution of Vanessa Merker has received research support from U.S. Department of Defense . The institution of Vanessa Merker has received research support from Neurofibromatosis Therapeutic Accleration Project. Vanessa Merker has received personal compensation in the range of $10,000-$49,999 for serving as a Science Writer with Neurofibromatosis Network.
	No disclosure on file
	No disclosure on file
Kaleb H. Yohay, MD (NYU Langone Medical Center)	Dr. Yohay has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Astra Zeneca. Dr. Yohay has received publishing royalties from a publication relating to health care. An immediate family member of Dr. Yohay has received publishing royalties from a publication relating to health care.
Nicole Ullrich, MD, PhD, MMSci, FAAN (Boston Children'S Hospital)	Dr. Ullrich has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alexion Pharmaceuticals. The institution of Dr. Ullrich has received research support from Children's Tumor Foundation. Dr. Ullrich has received intellectual property interests from a discovery or technology relating to health care. Dr. Ullrich has received publishing royalties from a publication relating to health care.
Scott R. Plotkin, MD, PhD, FAAN (Mass General Cancer Center)	Dr. Plotkin has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for NFlection Therapeutics. Dr. Plotkin has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Akouos. Dr. Plotkin has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for SonALAsense. Dr. Plotkin has stock in NFlection Therapeutics. Dr. Plotkin has stock in NF2 Therapeutics. Dr. Plotkin has stock in SonALAsense. Dr. Plotkin has received research support from Children's Tumor Foundation. Dr. Plotkin has received research support from Department of Defense. Dr. Plotkin has received research support from National Institutes of Health. Dr. Plotkin has received intellectual property interests from a discovery or technology relating to health care.

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