@article{3104453,
    title = "Identifying outcomes important to patients with glomerular disease and their caregivers",
    author = "Carter, S.A. and Gutman, T. and Logeman, C. and Cattran, D. and Lightstone, L. and Bagga, A. and Barbour, S.J. and Barratt, J. and Boletis, J. and Caster, D. and Coppo, R. and Fervenza, F.C. and Floege, J. and Hladunewich, M. and Hogan, J.J. and Richard Kitching, A. and Lafayette, R.A. and Malvar, A. and Radhakrishnan, J. and Rovin, B.H. and Scholes-Robertson, N. and Trimarchi, H. and Zhang, H. and Azukaitis, K. and Cho, Y. and Viecelli, A.K. and Dunn, L. and Harris, D. and Johnson, D.W. and Kerr, P.G. and Laboi, P. and Ryan, J. and Shen, J.I. and Ruiz, L. and Wang, A.Y.-M. and Lee, A.H.K. and Fung, S. and Tong, M.K.-H. and Teixeira-Pinto, A. and Wilkie, M. and Alexander, S.I. and Craig, J.C. and Tong, A.",
    journal = "Clinical Journal of The American Society of Nephrology",
    year = "2020",
    volume = "15",
    number = "5",
    pages = "673-684",
    publisher = "American Society of Nephrology",
    issn = "1555-9041, 1555-905X",
    doi = "10.2215/CJN.13101019",
    keywords = "adult;  aged;  anxiety;  Article;  caregiver;  clinical outcome;  daily life activity;  disease control;  family relation;  fatigue;  female;  fluid retention;  functional status;  glomerulopathy;  hazard;  human;  immunity;  infection;  kidney function;  kidney transplantation;  major clinical study;  male;  mortality;  proteinuria;  relapse;  remission;  renal replacement therapy;  self concept;  attitude to health;  Australia;  caregiver;  clinical trial;  glomerulonephritis;  health status;  Hong Kong;  information processing;  mental health;  middle aged;  multicenter study;  pathophysiology;  patient-reported outcome;  prognosis;  psychology;  qualitative research;  quality of life;  United Kingdom;  United States;  very elderly;  young adult, Adult;  Aged;  Aged, 80 and over;  Australia;  Caregivers;  Decision Making, Shared;  Female;  Focus Groups;  Functional Status;  Glomerulonephritis;  Health Knowledge, Attitudes, Practice;  Health Status;  Hong Kong;  Humans;  Male;  Mental Health;  Middle Aged;  Patient Reported Outcome Measures;  Prognosis;  Qualitative Research;  Quality of Life;  United Kingdom;  United States;  Young Adult",
    abstract = "Background and objectives Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. Design, setting, participants, & measurements We purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. Results Across 16 focus groups, 134 participants (range, 19–85 years old; 51%women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked out comes were kidney function(importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: Constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. Conclusions Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact. © 2020 by the American Society of Nephrology."
}