Results 1 to 10 of about 19,210,102 (353)

Development and content validity of the Barth Syndrome Symptom Assessment (BTHS-SA) for adolescents and adults

Orphanet Journal of Rare Diseases, 2021
Background Barth Syndrome (BTHS) is a rare genetic disorder that presents as a complex of debilitating symptoms and reduced life expectancy. Well-developed, BTHS-specific assessments measuring primary signs and symptoms of BTHS are not currently ...
Chad Gwaltney, Jonathan Stokes, Anthony Aiudi, Iyar Mazar, Sarah Ollis, Emily Love, Alan Shields   +6 more
doaj   +1 more source

Treatment Options for Dementia with Lewy Bodies: A Network Meta-Analysis of Randomised Control Trials

Neurology and Therapy, 2020
Introduction Dementia with Lewy bodies (DLB) is the third most common type of dementia after Alzheimer’s disease (AD) and vascular dementia. Treatment is targeted at specific disease manifestations/symptoms.
Amir A. Tahami Monfared, Mitesh Desai, Robert Hughes, Stefano Lucherini, Yunni Yi, Richard Perry   +5 more
doaj   +1 more source

Economic and humanistic burden of HPV-related disease in Indonesia: A qualitative analysis

Global Public Health, 2023
The burden of human papillomavirus (HPV) and HPV-related cancers and genital warts is increasing in developing countries, including Indonesia. The objective of this study was to qualitatively explore the humanistic and economic burden of these HPV ...
Marisa Felsher, Didik Setiawan, Stefan Varga, Richard Perry, Danielle Riley, Rebecca Newman, Abigail Beveridge, Charlotte Oswald, Smita Kothari, Isaya Sukarom, Maarten Postma   +10 more
doaj   +1 more source

Patients’ experiences of Parkinson’s disease: a qualitative study in glucocerebrosidase and idiopathic Parkinson’s disease

Journal of Patient-Reported Outcomes, 2020
Background Approximately 7–10% of Parkinson’s disease (PD) patients carry a GBA (Glucocerebrosidase) mutation (GBA-PD patients), which may influence the disease’s clinical course.
N. Bonner, S. Bozzi, L. Morgan, B. Mason, M. J. Peterschmitt, T. Z. Fischer, R. Arbuckle, M. Reaney   +7 more
doaj   +1 more source

Understanding the visual function symptoms and associated functional impacts of phakic presbyopia

Journal of Patient-Reported Outcomes, 2021
Plain English Summary Presbyopia is worsening of the ability to focus on close objects due to ageing. The objective of this study was to understand the lived experience of presbyopia, specifically to identify the visual symptoms experienced, and how ...
Sarah Bentley, Amy Findley, Sima Chiva-Razavi, Christel Naujoks, Francesco Patalano, Chloe Johnson, Rob Arbuckle, James S. Wolffsohn   +7 more
doaj   +1 more source

Development and content validation of the Pediatric Oral Medicines Acceptability Questionnaires (P-OMAQ): patient-reported and caregiver-reported outcome measures

Journal of Patient-Reported Outcomes, 2020
Background Evolving regulatory guidelines recommend routine assessment of the acceptability of pediatric oral medicines throughout clinical development processes.
Diane M. Turner-Bowker, Kristina An Haack, Meaghan Krohe, Andrew Yaworsky, Norma Vivas, Masami Kelly, Godhuli Chatterjee, Emily Chaston, Erin Mann, Matthew Reaney   +9 more
doaj   +1 more source

Evaluation of the content validity of patient-reported outcome (PRO) instruments developed for use with individuals with phakic presbyopia, including the Near Activity Visual Questionnaire-presbyopia (NAVQ-P) and the near vision correction independence (NVCI) instrument

Journal of Patient-Reported Outcomes, 2021
Background Presbyopia is the age-related deterioration in the ability to focus on close objects. In order to develop a patient-reported outcome (PRO) instrument to assess near vision functioning, the Near Activity Visual Questionnaire (NAVQ) was adapted ...
Sarah Bentley, Amy Findley, Sima Chiva-Razavi, Christel Naujoks, Francesco Patalano, Chloe Johnson, Rob Arbuckle, James S. Wolffsohn   +7 more
doaj   +1 more source

Correction to: The impact of perennial allergic rhinitis with/without allergic asthma on sleep, work and activity level

Allergy, Asthma & Clinical Immunology, 2020
The first and corresponding author was unfortunately presented as Mercedes Rodriguez Romano. The correct author name is Mercedes Romano.
Mercedes Romano, Stephanie James, Emily Farrington, Richard Perry, Lisa Elliott   +4 more
doaj   +1 more source

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

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