13023_2019_1265_MOESM1_ESM.pdf (1.1 MB)
MOESM1 of Cutaneous neurofibromas: patients’ medical burden, current management and therapeutic expectations: results from an online European patient community survey
journal contribution
posted on 2019-12-05, 05:30 authored by Marlene Guiraud, Athmane Bouroubi, Roxane Beauchamp, Arnaud Bocquet, Jean-Marc Grégoire, Isabelle Rauly-Lestienne, Ignacio Blanco, Pierre Wolkenstein, Anne-Marie SchmittAdditional file 1. Patient survey for online Carenity patient community ‘Project Neurofibromatosis type 1 with cutaneous neurofibromas’. The survey for neurofibromatosis type 1 patients with cutaneous neurofibromas (cNF) includes 37 closed-ended questions and 5 open-ended questions on the following domains: patients’ profile (age, gender, family situation, learning difficulties, number of cNF, age at time of first cNF, circumstances around cNF appearance), living with cNF (inconveniences caused by cNF, impact on quality of life, medical monitoring, access to specialized medical center), patients’ satisfaction with cNF management (access to and satisfaction with laser and/or surgical treatments, other medications used), and patients’ expectations in terms of future treatments (best galenic form, effectiveness criteria, risk benefit balance, acceptable period of treatment, acceptable frequency of administration). Three additional questions are slipped into the questionnaire as a comprehension test (checking test, ranking test, and table test).