期刊论文详细信息
Orphanet Journal of Rare Diseases | |
Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study | |
Stephen Lombardelli1  Madeline Merkel2  Jordanna Mora2  John J. Ko2  Stephen Meninger2  Nicola Mason3  Marieke Schurer4  John Chamberlayne5  Sue Burrell5  Liz Gill5  | |
[1] Alnylam Pharmaceuticals, Alnylam UK Ltd, Braywick Gate, SL6 1DA, Maidenhead, UK;Alnylam Pharmaceuticals, Cambridge, MA, USA;BresMed Health Solutions Ltd, Steele City House, Sheffield, UK;BresMed Netherlands B.V, HNK Utrecht CS, Utrecht, Netherlands;British Porphyria Association, Durham, UK; | |
关键词: Porphyria; Acute hepatic porphyria; Qualitative; Quantitative; Quality of life; Caregiver experience; Burden of illness; Pain; Chronic symptoms; Neuropathy; | |
DOI : 10.1186/s13023-021-01816-2 | |
来源: Springer | |