Results 1 to 10 of about 2,861,427 (316)

Qualitative concept elicitation and cognitive debriefing interviews of symptoms, impacts and selected customized PROMIS® Short Forms: a study in patients with axial spondyloarthritis

Journal of Patient-Reported Outcomes, 2023
Background Sleep disturbance, pain, and fatigue are key symptoms/impacts of axial spondyloarthritis (axSpA). Three customized Patient-Reported Outcomes Measurement Information System (PROMIS®) Short Forms (Sleep Disturbance, Pain Interference, and ...
Amy Findley, Jessica M. Middlehurst, Chloe A. Howse, Molly J. Clifford, William Neill, Sophi Tatlock, Wen-Hung Chen, Marguerite G. Bracher, Dharm S. Patel   +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

Development of a novel patient-reported outcome measure to assess signs and symptoms of COVID-19

Journal of Patient-Reported Outcomes, 2022
Background Given the urgent need for vaccines and treatments for coronavirus disease 2019 (COVID-19), the Symptoms of Infection with Coronavirus-19 (SIC), a comprehensive, patient-reported outcome (PRO) measure of signs and symptoms associated with COVID-
Carla Romano, Sheri Fehnel, Jeffrey Stoddard, Jerald Sadoff, Sandy Lewis, Pauline McNulty, Eric K. H. Chan, Emily Evans, Carol Jamieson, Ashley F. Slagle, Allen Mangel, Kelly McQuarrie   +11 more
doaj   +1 more source

Evaluating the Appropriateness of Existing Health-Related Quality of Life Measures in Lichen Planus

Dermatology and Therapy, 2023
Introduction Lichen planus (LP) is an inflammatory skin disorder that can present in various forms across the body, including lesions on the skin (cutaneous LP [CLP]), scalp (lichen planopilaris [LPP]) and mucosal regions (mucosal LP [MLP]).
Aoife Mahon-Smith, George Skingley, Lara Ayala-Nunes, Anjali Batish, Rosie Sharp, Christel Naujoks, Eva Schruf, Nicolò Compagno, Santiago G. Moreno   +8 more
doaj   +1 more source

Qualitative study to characterize patient experience and relevance of patient-reported outcome measures for patients with metastatic synovial sarcoma

Journal of Patient-Reported Outcomes, 2022
Background The outlook for patients with metastatic synovial sarcoma (mSS) is poor. Better understanding of patient experience in this setting, beyond clinical measures, may guide improvements in management.
Laurie Eliason, Laura Grant, Anya Francis, Anna Cardellino, Ken Culver, Sant P. Chawla, Rob Arbuckle, Shibani Pokras   +7 more
doaj   +1 more source

Electronic patient-reported monitoring of symptoms during follow-up of ovarian cancer patients: a feasibility study

BMC Cancer, 2022
Background Ovarian cancer patients require monitoring for relapse. Innovative follow-up methods are increasingly being explored. An electronic patient-reported outcome (ePRO) follow-up pathway was developed for women treated for ovarian cancer.
Fiona Kennedy, Leanne Shearsmith, Marie Holmes, Zoe Rogers, Rob Carter, Uschi Hofmann, Galina Velikova   +6 more
doaj   +1 more source

Patient Experience of Lichen Planus: A Qualitative Exploration of Signs, Symptoms, and Health-Related Quality of Life Impacts

Dermatology and Therapy, 2023
Introduction Lichen planus (LP) is an inflammatory skin disorder that can present in various forms across the body, including lesions on the skin (cutaneous LP [CLP]), scalp (lichen planopilaris [LPP]), and mucosal regions (mucosal LP [MLP]). Qualitative
Aoife Mahon-Smith, Molly Clifford, Anjali Batish, Rosie Sharp, Charlotte Panter, Christel Naujoks, Eva Schruf, Nicolò Compagno, Santiago G. Moreno   +8 more
doaj   +1 more source

How to address the challenges of evaluating treatment benefits-risks in rare diseases? A convergent mixed methods approach applied within a Merkel cell carcinoma phase 2 clinical trial

Orphanet Journal of Rare Diseases, 2018
Background Demonstrating treatment benefits within clinical trials in the context of rare diseases is often methodologically and practically challenging. Mixed methods research offers an approach to overcome these challenges by combining quantitative and
Murtuza Bharmal, Isabelle Guillemin, Alexia Marrel, Benoit Arnould, Jérémy Lambert, Meliessa Hennessy, Fatoumata Fofana   +6 more
doaj   +1 more source

A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis

Journal of Patient-Reported Outcomes, 2021
Background Many patients with hand osteoarthritis (HOA) experience reduced health-related quality of life. This study sought to better understand the disease and treatment experience of individuals with HOA, explore any differences in experiences between
Charlotte Panter, Pamela Berry, Deven Chauhan, Sofia Fernandes, Sally Gatsi, Josephine Park, Jane R. Wells, Rob Arbuckle   +7 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