Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey.
Pamela L WoltersNour Al GhriwatiMelissa BakerStaci MartinDale BergGregg EricksonBarbara FranklinVanessa L MerkerBeverly OberlanderStephanie ReeveClaas RohlTena RosserAna-Maria VranceanuPublished in: Clinical trials (London, England) (2023)
This study conducted the largest survey assessing physical symptoms, mental health needs, and preferences for psychosocial trials in adults with neurofibromatosis. Results indicate a high prevalence of disease manifestations, psychosocial difficulties, and untreated mental health problems in adults with neurofibromatosis and a high degree of willingness to participate in psychosocial clinical trials. Patient preferences should be considered when designing and implementing psychosocial interventions to develop the most feasible and meaningful studies.