Amanda L Truelove, Erin Arcipowski, Michele Herndon, Jane McCormack, Lisa M Steurer, Jennifer Lee Broeder, Anna B Newcomb
Trauma Registry Professionals' Perspectives on the Secondary Traumatic Stress Component of Compassion Fatigue: A Qualitative Study
Journal of trauma nursing : the official journal of the Society of Trauma Nurses
mucopolysaccharidosis type ii mps ii hunter syndrome rare xlinked metabolic disorder predominantly affecting males pabinafusp alfa iduronate2sulfatase enzyme designed cross bloodbrain barrier approved japan 2021 first enzyme replacement therapy targeting neuropathic somatic signs symptoms mps ii study reports caregivers experiences mps ii patients receiving pabinafusp alfa qualitative interviews semistructured qualitative interviews conducted caregivers seven clinical sites japan using semistructured moderation guide voice caregiver guide thematic analysis applied interview transcripts identify symptoms healthrelated quality life impacts baseline changes treatment overall treatment experience seven caregivers 16 trial sites participated representing seven children aged 818 years received pabinafusp alfa 3335 years time interviews data suggest general trend toward improvement multiple aspects although caregivers observed discernible changes reported cognitive improvements included language skills concentration selfcontrol eye contact mental clarity concept understanding following instructions expressing personal needs changes reported included musculoskeletal improvements somatic changes motor function mobility organ involvement joint mobility sleep patterns fatigue four caregivers reported improvements family quality life five expressed treatment satisfaction seven indicated strong willingness continue treatment children pabinafusp alfa caregivers perspectives study demonstrate treatment satisfaction improvement various aspects quality life following therapy pabinafusp alfa findings enhance understanding pabinafusp alfas potential benefits treating mps ii contribute defining mps iispecific outcome measures future clinical trials