2024
Understanding chronic pain in Neurofibromatosis Type 1 using the Neurofibromatosis Pain Module (NFPM)
Buono F, Larkin K, Zempsky W, Grau L, Martin S. Understanding chronic pain in Neurofibromatosis Type 1 using the Neurofibromatosis Pain Module (NFPM). American Journal Of Medical Genetics Part A 2024, 194: e63541. PMID: 38234177, DOI: 10.1002/ajmg.a.63541.Peer-Reviewed Original ResearchNeurofibromatosis type 1Chronic painImpact of CPPain modulationPain regionsModerate pain severityType 1Autosomal dominant genetic disorderCross-sectional studyQuality of lifeDominant genetic disorderMedical providersPain severitySensitive clinical measureDaily functioningClinical measuresPainEffective treatmentGenetic disordersNeurofibromatosisClinical assessmentMultiple domainsAdultsQuantitative responseProviders
2022
Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts
Grau LE, Larkin K, Lalloo C, Stinson JN, Zempsky WT, Ball SA, Buono FD. Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts. BMJ Open 2022, 12: e056692. PMID: 35840301, PMCID: PMC9295671, DOI: 10.1136/bmjopen-2021-056692.Peer-Reviewed Original ResearchConceptsPain management expertsNeurofibromatosis type 1Type 1Self-management mobile appAudio-recorded focus groupsChronic painAPP levelsFocus groupsPainPotential associationMobile health applicationsNF1 groupTypes of participantsGenetic disordersNeeds of individualsOnline focus group discussionsOnline focus groupsFocus group discussionsAppropriate visualsGroupParticipant groupsFree accessSpecific needsIndividualsHealth applications
2021
Innovation in the treatment of persistent pain in adults with Neurofibromatosis Type 1 (NF1): Implementation of the iCanCope mobile application
Buono FD, Lalloo C, Larkin K, Zempsky WT, Ball S, Grau LE, Pham Q, Stinson J. Innovation in the treatment of persistent pain in adults with Neurofibromatosis Type 1 (NF1): Implementation of the iCanCope mobile application. Contemporary Clinical Trials Communications 2021, 25: 100883. PMID: 35036627, PMCID: PMC8743203, DOI: 10.1016/j.conctc.2021.100883.Peer-Reviewed Original ResearchNeurofibromatosis type 1Pain symptomsNF1 populationType 1Chronic pain symptomsSelf-management treatmentPersistent painTreatment satisfactionTreatment optionsControl studySix weeksPainPsychometric evaluationContingency managementInitial effectivenessGenetic disordersThird groupSymptomsAdultsTreatmentPopulationDifferent populationsGroupParticipants' experiencesGreater reach