Patient-Reported Outcomes in Glomerular Disease

Journal of the American Society of Nephrology

Debbie S. Gipson¹  Sarrit Kovacs¹  Elektra J. Papadopoulos¹  Aliza Thompson¹  Peter A. Merkel¹  Noelle E. Carlozzi¹  David T. Selewski¹  Jonathan P. Troost¹  Howard Trachtman¹ 

关键词: Bone marrow necrosis;    Sickle cell disease;    Hyperhemolysis syndrome;   

DOI  :  

学科分类：泌尿医学

来源: American Society of Nephrology

【 摘 要 】

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.

【 授权许可】

Unknown