Results 1 to 10 of about 6,207,857 (118)

Psychometric performance of the Primary Mitochondrial Myopathy Symptom Assessment (PMMSA) in a randomized, double-blind, placebo-controlled crossover study in subjects with mitochondrial disease

Journal of Patient-Reported Outcomes, 2022
Background The Primary Mitochondrial Myopathy Symptom Assessment (PMMSA) is a 10-item patient-reported outcome (PRO) measure designed to assess the severity of mitochondrial disease symptoms.
Chad Gwaltney, Jonathan Stokes, Anthony Aiudi, Iyar Mazar, Sarah Ollis, Emily Love, Amel Karaa, Carrie R. Houts, R. J. Wirth, Alan L. Shields   +9 more
doaj   +1 more source

The endometriosis daily diary: qualitative research to explore the patient experience of endometriosis and inform the development of a patient-reported outcome (PRO) for endometriosis-related pain

Journal of Patient-Reported Outcomes, 2022
Purpose Endometriosis is a chronic disorder of the female reproductive system characterized by debilitating symptoms, particularly endometriosis-related pain (ERP).
Yanfen Guan, Allison M. Nguyen, Samantha Wratten, Sharan Randhawa, Jessica Weaver, Felipe Arbelaez, Arnaud Fauconnier, Charlotte Panter   +7 more
doaj   +1 more source

Psychometric validation and testing of the 10-item pediatric daily chest-related electronic patient reported outcome (ePRO) diary

Journal of Patient-Reported Outcomes, 2023
Background and objective The chest-related electronic patient reported outcome (ePRO) diary was recently developed to assess chest-related symptoms experienced by pediatric and adolescent populations during upper respiratory tract infections (URTI).
Rob Arbuckle, Tim Shea, Kate Burrows, Chris Marshall, Andrew Trigg, Julia Stein, Helmut H. Albrecht   +6 more
doaj   +1 more source

Development and content validity testing of patient-reported outcome (PRO) items to assess chest congestion associated with the common cold for use in children and adolescents

Journal of Patient-Reported Outcomes, 2022
Background This article describes qualitative interviews conducted with children (aged 6–11), adolescents (aged 12–17), and adults with the common cold as well as parents/caregivers of the 6–8-year-old children.
Rob Arbuckle, Chris Marshall, Laura Grant, Kate Burrows, Helmut H. Albrecht, Tim Shea   +5 more
doaj   +1 more source

Generation of evidence supporting the content validity of SF-36, FACIT-F, and LupusQoL, and novel patient-reported symptom items for use in patients with systemic lupus erythematosus (SLE) and SLE with lupus nephritis (LN)

Lupus Science and Medicine, 2022
Objective SLE and lupus nephritis (LN) have significant impacts on the health-related quality of life of patients living with the condition, which are important to capture from the patient’s perspective using patient-reported outcomes (PROs).
Vibeke Strand, Anna Roberts, Zahi Touma, Amy Ward, Pamela Berry, Rebecca Williams-Hall, Nicola Williamson, Melissa Barclay, Adam Gater, Chloe Tolley, Helena Bradley, Elizabeth Hsia, Qing Zuraw, Patricia DeLong   +13 more
doaj   +1 more source

Understanding the life experience of Barth syndrome from the perspective of adults: a qualitative one-on-one interview study

Orphanet Journal of Rare Diseases, 2019
Background Barth syndrome (BTHS, OMIM 302060) is a rare, life-threatening, x-linked genetic disorder that occurs almost exclusively in males and is characterized by cardiomyopathy, neutropenia, skeletal muscle myopathy primarily affecting larger muscles,
Iyar Mazar, Jonathan Stokes, Sarah Ollis, Emily Love, Ashlee Espensen, Peter G. Barth, John H. Powers, Alan L. Shields   +7 more
doaj   +1 more source

Development and testing of an alternative responder definition for EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI)

RMD Open, 2023
Objectives Dryness, fatigue and joint/muscle pain are typically assessed in Sjögren’s trials using European Alliance of Associations for Rheumatology Sjögren’s Syndrome Patient Reported Index (ESSPRI).
Simon Bowman, Wolfgang Hueber, Samantha Wratten, Linda Abetz-Webb, Ethan Arenson, Pip Griffiths, Briana Ndife, Daniel Kuessner, Pushpendra Goswami   +8 more
doaj   +1 more source

Development and equivalence of new faces for inclusion in the Childhood Asthma Control Test (C-ACT) response scale

Journal of Patient-Reported Outcomes, 2021
Plain English summary Accurate monitoring of the symptoms associated with pediatric asthma is important when managing the condition. The CHILDHOOD ASTHMA CONTROL TEST (C-ACT) is a questionnaire widely used to measure asthma severity in young children ...
Kate Sully, Nicola Bonner, Helena Bradley, Robyn von Maltzahn, Rob Arbuckle, Louise Walker-Nthenda, Aoife Mahon, Brandon Becker, Louise O’Hara, Katherine B. Bevans, Mark Kosinski, Robert S. Zeiger, Ross Mackenzie, Linda Nelsen   +13 more
doaj   +1 more source

Understanding key symptoms, side effects, and impacts of HR+/HER2- advanced breast cancer: qualitative study findings

Journal of Patient-Reported Outcomes, 2019
Background Patients with breast cancer experience a variety of disease symptoms and treatment-related side effects that can adversely affect functioning. The breast cancer experience may differ across disease stages and biomarker subtypes.
Nina Galipeau, Brittany Klooster, Meaghan Krohe, Derek H. Tang, Dennis A. Revicki, David Cella   +5 more
doaj   +1 more source

Qualitative exploration of the visual function impairments and impacts on vision-dependent activities of daily living in Retinitis Pigmentosa and Leber Congenital Amaurosis: content validation of the ViSIO-PRO and ViSIO-ObsRO measures

Journal of Patient-Reported Outcomes, 2023
Background Retinitis Pigmentosa (RP) and Leber Congenital Amaurosis (LCA) are rare inherited retinal degenerative disorders. The associated visual impairments have significant impacts on patients’ vision-dependent activities of daily living (ADL ...
Christine Kay, Isabelle Audo, Christel Naujoks, Claudio Spera, M. Dominik Fischer, Jane Green, Todd Durham, Nicola Williamson, Helena Bradley, Melissa Barclay, Joel Sims, Judit Banhazi, Francesco Patalano   +12 more
doaj   +1 more source