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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 Vranceanu
Published 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.
Keyphrases
  • mental health
  • mental illness
  • clinical trial
  • physical activity
  • cross sectional
  • healthcare
  • randomized controlled trial
  • social media
  • phase ii