Development of a preliminary conceptual model of the patient experience of chronic kidney disease: a targeted literature review and analysis

BMC Nephrology

Anna Sundgren¹  Jennifer E. Flythe²  Paul Cordero³  Amanda Grandinetti⁴  Anna Rydén⁵  Niklas Karlsson⁵  Henry Cremisi⁶ 

[1] Cardiovascular Renal & Metabolic late stage development, AstraZeneca, Gaithersburg, MD, USA;Division of Nephrology and Hypertension, Department of Medicine, University of North Carolina School of Medicine, 7024 Burnett-Womack CB #7155, Chapel Hill, NC, USA;IQVIA, Reading, UK;Northern Illinois University, DeKalb, IL, USA;R&D Digital Health, AstraZeneca, Gothenburg, Sweden;US Medical Affairs, Renal, AstraZeneca, Wilmington, DE, USA;

关键词: Chronic kidney disease (CKD);    Conceptual model;    Health-related quality of life (HRQOL);    Patient experience;    Patient-reported outcome (PRO);   

DOI  :  10.1186/s12882-021-02440-9

来源: Springer

【 摘 要 】

BackgroundPatient-reported outcome (PRO) instruments should capture the experiences of disease and treatment that patients consider most important in order to inform patient-centred care and product development. The aim of this study was to develop a preliminary conceptual model of patient experience in chronic kidney disease (CKD) based on a targeted literature review and to characterize existing PRO instruments used in CKD.MethodsPubMed, EMBASE and Cochrane databases and recent society meetings were searched for publications reporting signs/symptoms and life impacts of CKD. Concepts identified in the literature review were used to develop a preliminary conceptual model of patient experience of CKD, overall, and within patient subpopulations of differing CKD causes, severities and complications. PRO instruments, identified from PRO databases, CKD literature and CKD clinical trials, were assessed for content validity, psychometric strength and coverage of concepts in the literature review.ResultsIn total, 100 publications met criteria for analysis; 56 signs/symptoms and 37 life impacts of CKD were identified from these sources. The most frequently mentioned signs/symptoms were pain/discomfort (57% of publications) and tiredness/low energy/lethargy/fatigue (42%); the most commonly reported life impacts were anxiety/depression (49%) and decrements in physical functioning (43%). Signs/symptoms and life impacts varied across the subpopulations and were more frequent at advanced CKD stages. The preliminary conceptual model grouped signs/symptoms into seven domains (pain/discomfort; energy/fatigue; sleep-related; gastrointestinal-related; urinary-related; skin−/hair−/nails-related; and other) and life impacts into six domains (psychological/emotional strain; cognitive impairment; dietary habit disruption; physical function decrements; interference with social relationships; and other). Eleven PRO instruments were considered to be promising for use in CKD; all had limitations.ConclusionsAlthough preliminary, the proposed conceptual model highlights key PROs for people with CKD and is intended to spur development of more tailored PRO instruments to assess these concepts.

【 授权许可】

CC BY