Patient-Reported Outcomes in Glomerular Disease.
Incorporation of the patient perspective into research and clinical practice will enrich our understanding of the status and management of patients with glomerular disease and may result in therapies that better address patient needs. In recent years, the importance of the patient experience of glomerular disease has become clear, and significant efforts have been undertaken to systematically capture and describe the patient's disease experience. Patient-reported outcome instruments provide a means to assess the patient's experience in a quantitative manner, thus enabling for comparisons within and between patients. Patient-reported outcome assessments are solely on the basis of a patient report about the status of their health without amendment or interpretation by a clinician or others. Patient-reported outcome assessments provide an opportunity to incorporate the patient perspective into clinical care, research, and clinical trials. Our paper provides an overview of terminology and development methods for patient-reported outcomes and reviews (1) currently available patient-reported outcome instruments appropriate for use in glomerular disease, (2) existing patient-reported outcome data in glomerular disease, and (3) opportunities for incorporating patient-reported outcome instruments into clinical care and research.
Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital and.
David T
DT
Selewski
Division of Cardiovascular and Renal Products and.
Aliza
A
Thompson
Immediate Office, Office of New Drugs, Center for Drug Evaluation and Research, Food and Drug Administration, Silver Spring, Maryland.
Sarrit
S
Kovacs
Immediate Office, Office of New Drugs, Center for Drug Evaluation and Research, Food and Drug Administration, Silver Spring, Maryland.
Elektra J
EJ
Papadopoulos
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan.
Noelle E
NE
Carlozzi
Department of Pediatrics, Division of Nephrology, New York University Langone Medical Center, New York, New York; and.
Howard
H
Trachtman
Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital and.
Jonathan P
JP
Troost
Division of Rheumatology and Department of Biostatistics and Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania.
Peter A
PA
Merkel
Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital and.
Debbie S
DS
Gipson
D056648:Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis / Q000150:complications; D002986:Clinical Trials as Topic; D006304:Health Status; D006801:Humans; D007674:Kidney Diseases / Q000209:etiology / Q000628:therapy*; D007678:Kidney Glomerulus; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life; D009626:Terminology as Topic
Disease Management; Humans; Patient Outcome Assessment; glomerulonephritis; glomerulopathy; kidney disease; patient-centered outcomes; quality of life