Patient life aspirations in the context of Duchenne Muscular Dystrophy: a mixed-methods case-control study.

Autor: Schwartz CE; DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA. carolyn.schwartz@deltaquest.org.; Departments of Medicine and Orthopaedic Surgery, Tufts University Medical School, Boston, MA, USA. carolyn.schwartz@deltaquest.org., Biletch E; DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA., Stuart RBB; DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA., Rapkin BD; Department of Epidemiology and Population Health, Albert Einstein College of Medicine, Bronx, NY, USA.

Publikováno v: Journal of patient-reported outcomes [J Patient Rep Outcomes] 2022 Sep 14; Vol. 6 (1), pp. 97. Date of Electronic Publication: 2022 Sep 14.

If it's information, it's not "bias": a scoping review and proposed nomenclature for future response-shift research.

Autor: Schwartz CE; DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA. carolyn.schwartz@deltaquest.org.; Departments of Medicine and Orthopaedic Surgery, Tufts University Medical School, Boston, MA, USA. carolyn.schwartz@deltaquest.org., Rohde G; Department of Clincal Research Sorlandet Hospital, Faculty of Health and Sport Sciences at University of Agder, Kristiansand, Norway., Biletch E; DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA., Stuart RBB; DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA., Huang IC; Department of Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, TN, USA., Lipscomb J; Department of Health Policy and Management, Rollins School of Public Health, and the Winship Cancer Institute, Emory University, Atlanta, GA, USA., Stark RB; DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA., Skolasky RL; Department of Orthopaedic Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

Publikováno v: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation [Qual Life Res] 2022 Aug; Vol. 31 (8), pp. 2247-2257. Date of Electronic Publication: 2021 Oct 27.