ABSTRACT Objective Spinal muscular atrophy (SMA) significantly impacts motor function. This study aimed to assess the persistent burden and unmet needs among currently treated patients with SMA and their caregivers. Methods Two complementary web‐based surveys were distributed in August 2024 among patients with SMA and their caregivers.
Julie A. Parsons+8 more
wiley +1 more source
Objective Fibromyalgia is a chronic condition characterized by widespread musculoskeletal pain and fatigue. Almost everyone with fibromyalgia has sleep problems. We aimed to evaluate the effectiveness and safety of current interventions for the management of fibromyalgia‐related sleep problems.
Jemma Hudson+11 more
wiley +1 more source
Development of a Patient‐reported Experience and Outcome Measures in Pediatric Bowel Management
Kieran Jian Peng Chen, Eri Fujitake
openaire +8 more sources
Juvenile Idiopathic Arthritis, Earnings, and Work Loss: A Nationwide Matched Cohort Study
Objective This study compares trajectories of earnings and work loss in individuals with juvenile idiopathic arthritis (JIA) versus matched comparators from the general population. Methods Patients with JIA (n = 4,737) were identified in the Swedish National Patient Register (2001–2017) and individually matched to up to five general population ...
Heather Miller+4 more
wiley +1 more source
Patient Perspectives on Coordinated Care: Preliminary Results from the Implementation Stage Using Patient-Reported Experience Measures (PREMs). [PDF]
Wieczorek-Wójcik B+6 more
europepmc +1 more source
Objective Patients with knee osteoarthritis rely on symptomatic treatments, in which up to 75% of the pain reduction can be attributed to the placebo effect. This effect may vary based on treatment type (eg, biologics vs nonbiologic injection) and route of administration (eg, intra‐articular vs topical vs oral).
Johanna M. Borst+5 more
wiley +1 more source
Diverse Treatment Goals in Psoriatic Arthritis: Insights From Participants in the PARC Cohort
Objective The aim of this study was to examine patient‐reported treatment goals among individuals with psoriatic arthritis. Methods Participants in the Psoriatic Arthritis Research Consortium completed standardized assessments, including patient‐reported outcome (PROs) instruments, between 2017 and 2020.
Astia Allenzara+8 more
wiley +1 more source
Cancer Patient-Reported Experience Measures (PREMs) Regarding the Policies Implemented to Contain the Spread of Sars-CoV-2 and Vaccination Campaign at Veneto Institute of Oncology. [PDF]
Caccese M+17 more
europepmc +1 more source
Objective Promoting Resilience in Stress Management (PRISM) is a resilience coaching program designed for adolescents with chronic illness. We aimed to examine the perceived feasibility, acceptability, and appropriateness of PRISM among pediatric rheumatologists treating adolescents with chronic musculoskeletal pain and obtain recommendations for ...
Sabrina Gmuca+9 more
wiley +1 more source
Patient-Reported Experience Measures for In- and Outpatients in Mental Health and Substance Use Services: Psychometric Properties and Results From a Nationwide Survey in Finland. [PDF]
Viertiö S+3 more
europepmc +1 more source