Zobrazeno 1 - 10
of 38
pro vyhledávání: '"Roland B, Stark"'
Publikováno v:
Journal of Patient-Reported Outcomes, Vol 6, Iss 1, Pp 1-10 (2022)
Abstract Background In our companion paper, we addressed the interplay between caregiver impact, out-of-pocket expenditures, and Duchenne Muscular Dystrophy (DMD) disability. We found that DMD caregiver impact could be characterized by four Latent Pr
Externí odkaz:
https://doaj.org/article/68d50f3cd2a7456bb4ccfa9553ea409d
Publikováno v:
Journal of Patient-Reported Outcomes, Vol 6, Iss 1, Pp 1-11 (2022)
Abstract Background Providing caregiving support to people with Duchenne muscular dystrophy (DMD) is challenging, beginning in early childhood, and continuing through the progression of multidimensional disability. This study addressed the interplay
Externí odkaz:
https://doaj.org/article/c603f69d0f27404f83592706e9ce783c
Autor:
Carolyn E. Schwartz, Roland B. Stark, David Cella, Katrina Borowiec, Katherine L. Gooch, Ivana F. Audhya
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-14 (2021)
Abstract Background Person-reported outcomes measurement development for rare diseases has lagged behind that of more common diseases. In studies of caregivers of patients with rare diseases, one relies on proxy report to characterize this disability
Externí odkaz:
https://doaj.org/article/5adabc4ef23b4480bcb66f6b4683aadc
Publikováno v:
Journal of Patient-Reported Outcomes, Vol 5, Iss 1, Pp 1-16 (2021)
Abstract Background This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of parents of similar-age c
Externí odkaz:
https://doaj.org/article/bc2b7f86292f48379b318d9bf5310196
Publikováno v:
Health and Quality of Life Outcomes, Vol 19, Iss 1, Pp 1-13 (2021)
Abstract Background Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, life-threatening terminal-complement-mediated disease resulting in intravascular hemolysis and thrombosis with significant morbidity and premature mortality. There exists no dis
Externí odkaz:
https://doaj.org/article/275dc44161c94f8482dadcfa3cd34465
Publikováno v:
Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-15 (2021)
Abstract Aims Paroxysmal nocturnal hemoglobinuria (PNH) is a rare and life-threatening intravascular hematologic disorder with significant morbidity and premature mortality. Clinical trials (NCT02946463 and NCT03056040) comparing ravulizumab with ecu
Externí odkaz:
https://doaj.org/article/4743efa624514ab586ad2a42294f9bda
Publikováno v:
Journal of Patient-Reported Outcomes, Vol 5, Iss 1, Pp 1-15 (2021)
Abstract Background The Rapkin and Schwartz appraisal theory and measure provided a path toward documenting response-shift effects and describing individual differences in ways of thinking about quality of life (QOL) that distinguished people in diff
Externí odkaz:
https://doaj.org/article/1c03e2fb502a4c99bee9cc4e35df1a2f
Publikováno v:
Health Psychology and Behavioral Medicine, Vol 9, Iss 1, Pp 1031-1052 (2021)
Objective The present study validated the DeltaQuest Wellness Measure (DQ Wellness), a new 15-item measure of wellness that spans relevant attitudes, behaviors, and perspectives. Design This cross-sectional web-based study recruited chronically-ill p
Externí odkaz:
https://doaj.org/article/06c75bbd08a841bca314b096c0674017
Publikováno v:
Journal of Patient-Reported Outcomes, Vol 4, Iss 1, Pp 1-11 (2020)
Abstract Background Two decades of research on quality-of-life (QOL) appraisal have demonstrated links between patient experience and health outcomes and have accounted for both intra-individual change and inter-individual differences in a wide range
Externí odkaz:
https://doaj.org/article/a7eaea5e0e4f48c08189cc977ebbb2e6
Autor:
Bethany L. Bartley, Carolyn E. Schwartz, Roland B. Stark, Anna M. Georgiopoulos, Deborah Friedman, Christopher J. Richards, Henry L. Dorkin, T. Bernard Kinane, Isabel P. Neuringer, Lael M. Yonker
Publikováno v:
BMC Pulmonary Medicine, Vol 20, Iss 1, Pp 1-9 (2020)
Abstract Background Many individuals with cystic fibrosis (CF) die from respiratory failure without referral for lung transplant. Physician practices that may expedite, delay, or preclude referral, are poorly understood. Methods Two parallel, web-bas
Externí odkaz:
https://doaj.org/article/49bdb292fdce485abdd30764bd38a760