Evaluating the Patient-Reported Outcomes Measurement Information System scales in acute intermittent porphyria.

Hetanshi NaikJessica R OverbeyGuy H MontgomeryGary WinkelManisha BalwaniKarl E AndersonD Montgomery BissellHerbert L BonkovskyJohn D PhillipsBruce WangBrendan McGuireSiobán KeelCynthia LevyAngelika ErwinRobert J Desnick

Published in: Genetics in medicine : official journal of the American College of Medical Genetics (2019)

Pain interference and fatigue were the most responsive scales in measuring QoL in this AIP cohort. Future studies should assess whether these scales capture longitudinal disease progression and treatment response.

Keyphrases

patient reported outcomes
liver failure
chronic pain
pain management
respiratory failure
current status
neuropathic pain
drug induced
high intensity
cross sectional
cancer therapy
healthcare
sleep quality
case control
aortic dissection
spinal cord injury
hepatitis b virus
drug delivery