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MISPERCEPTION OF CANCER RISK IN PATIENTS WITH NEUROFIBROMATOSIS 1 AND 2

Wednesday, October 23, 2013
Key Ballroom Foyer (Hilton Baltimore)
Poster Board # P4-10
Decision Psychology and Shared Decision Making (DEC)
Candidate for the Lee B. Lusted Student Prize Competition

Vanessa L. Merker, BS1, Kelly B. Smith, PhD2, Daphne Wang, BS1, Alona Muzikansky, MA1, Scott R. Plotkin, MD, PhD1 and Elyse R. Park, PhD1, (1)Massachusetts General Hospital, Boston, MA, (2)University of British Columbia, Vancouver, BC, Canada
Purpose: Neurofibromatosis 1 (NF1) and neurofibromatosis 2 (NF2) are two separate neurogenetic disorders that are both characterized by a predisposition to develop multiple benign nerve sheath tumors.  While patients with NF1 are at substantially increased risk for developing malignant peripheral nerve sheath tumors (MPNST) and malignant gliomas compared to unaffected individuals, there is no evidence that patients with NF2 are also at increased risk for these cancers.  Unfortunately, much popular literature does not specify the type of neurofibromatosis being described, so it is unknown if patients understand the difference in cancer risk between these two conditions. 

Method: This prospective survey was conducted within a single academic medical center.  NF1 and NF2 patients’ perceived personal risk (i.e. own risk) and comparative risk (i.e. risk in relation to others) of developing MPNST and malignant glioma were assessed using 5-point Likert scales. 

Result: 187 adults (108 with NF1 and 79 with NF2) consented to participate and completed all risk perception questions (74% response rate.)  57% of respondents were female and 52% had completed college.  34% and 45% of NF1 patients disagreed that having NF1 placed them at increased risk for MPNST and malignant glioma, respectively.  25% and 34% of NF1 patients did not recognize that their risk for MPNST and malignant glioma, respectively, was greater than the average person.  On the other hand, 13% and 15% of NF2 patients thought that having NF2 placed them at increased risk for MPNST and malignant glioma, respectively.  29% and 27% of NF2 patients thought that their risk for MPNST and malignant glioma, respectively, was greater than the average person. 

Conclusion: A significant proportion of NF1 patients underestimate their risk of developing MPNST and malignant glioma, while a significant proportion of NF2 patients overestimate their risk.  Clinicians and patient foundations should develop novel ways to better educate patients about their cancer risk, taking care to emphasize differences between these two disorders.

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