Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

por Gill, Liz, Burrell, Sue, Chamberlayne, John, Lombardelli, Stephen, Mora, Jordanna, Mason, Nicola, Schurer, Marieke, Merkel, Madeline, Meninger, Stephen, Ko, John J.
Publicado 2021

Patient Perspective on Acute Hepatic Porphyria with Sporadic Attacks: A Chronic Disease with Substantial Health-Related Quality of Life Impacts

por Wheeden, Kristen, Lyon Howe, Desiree, Burrell, Sue, Gill, Liz, Chamberlayne, John, Williams, Edrin R., Simon, Amy, Ko, John J., Mora, Jordanna, Wells, Ted, Evans, Christopher, Paulich, Maggie, Meninger, Stephen, Lombardelli, Stephen
Publicado 2022

Quantifying the impact of symptomatic acute hepatic porphyria on well‐being via patient‐reported outcomes: Results from the Porphyria Worldwide Patient Experience Research (POWER)...

por Dickey, Amy, Wheeden, Kristen, Lyon, Desiree, Burrell, Sue, Hegarty, Sean, Falchetto, Rocco, Williams, Edrin R., Barman‐Aksözen, Jasmin, DeCongelio, Marc, Bulkley, Alison, Matos, Joana E., Mnif, Tarek, Mora, Jordanna, Ko, John J., Meninger, Stephen, Lombardelli, Stephen, Nance, Danielle
Publicado 2022