TY - JOUR
T1 - Identifying outcomes important to patients with glomerular disease and their caregivers
AU - Carter, Simon A.
AU - Gutman, Talia
AU - Logeman, Charlotte
AU - Cattran, Dan
AU - Lightstone, Liz
AU - Bagga, Arvind
AU - Barbour, Sean J.
AU - Barratt, Jonathan
AU - Boletis, John
AU - Caster, Dawn
AU - Coppo, Rosanna
AU - Fervenza, Fernando C.
AU - Floege, Ju¨Rgen
AU - Hladunewich, Michelle
AU - Hogan, Jonathan J.
AU - Richard Kitching, A.
AU - Lafayette, Richard A.
AU - Malvar, Ana
AU - Radhakrishnan, Jai
AU - Rovin, Brad H.
AU - Scholes-Robertson, Nicole
AU - Trimarchi, He´Rnan
AU - Zhang, Hong
AU - Azukaitis, Karolis
AU - Cho, Yeoungjee
AU - Viecelli, Andrea K.
AU - Dunn, Louese
AU - Harris, David
AU - Johnson, David W.
AU - Kerr, Peter G.
AU - Laboi, Paul
AU - Ryan, Jessica
AU - Shen, Jenny I.
AU - Ruiz, Lorena
AU - Wang, Angela Yee Moon
AU - Lee, Achilles Hoi Kan
AU - Fung, Samuel
AU - Tong, Matthew Ka Hang
AU - Teixeira-Pinto, Armando
AU - Wilkie, Martin
AU - Alexander, Stephen I.
AU - Craig, Jonathan C.
AU - Tong, Allison
N1 - Funding Information:
This project is supported by National Health and Medical Research Council Program grant 1092957. Dr. Carter is supported by National Health and Medical Research Council Postgraduate Scholarship grant 1168994. Dr. Caster and Dr. Cattran are supported by National Institutes of Health grant K08DK102542. Dr. Cho is supported by National Health and Medical Research Council Early Career Fellowship grant 1126256. Ms. Gutman is supported by National Health and Medical Research Council Postgraduate Scholarship grant 1169149. Dr. Johnson is supported by National Health and Medical Research Council Practitioner Fellowship grant 1117534.Dr.ShenissupportedbyNationalInstitutesof Healthgrant K23DK103972. Dr. Teixeira-Pinto is supported by National Health and Medical Research Council Career Development Fellowship grant 1106716. Dr. Viecelli received support from National Health and Medical Research Council Medical Postgraduate Scholarship grant 1114539.
Funding Information:
Dr. Caster reports consulting fees from Retrophin and being a site principal investigator for clinical trials from Aurinia, Calliditas, Retrophin, and Mallinckrodt outside the submitted work. Dr. Floege reports personal fees from Calliditas, Retrophin, Omeros, and Vis-terra during theconductofthestudy.Dr.Hladunewichreportsother from Pfizer, personal fees from Ontario Renal Network, personal fees from Uptodate, grants from CureGlomerulonephropathy, grants from Neptune, grants from Ionis, grants from Chemocentryx, and grants from Calliditas outside the submitted work. Dr. Hogan reports personal fees from Retrophin, personal fees from Dimerix, personal fees from Zyversa, personal fees from GSK, other from Calliditas, other from Omeros, and other from Achillion outside the submitted work. Dr. Johnson reports grants and personal fees from Baxter Healthcare, Fresenius Medical Care, personal fees from As-traZeneca, AWAK, and Ono, grants from the National Health and Medicla Research Council of Australia, and other from Amgen outside the submitted work. Dr. Lafayette reports grants and personal fees from Mallinckrodt, Riegel, Aurinia, Retrophin, and Cal-liditas, grants from Roche, and personal fees from Relypsa outside the submitted work. Dr. Rovin reports personal fees from Aurinia, personal fees from Calliditas, personal fees from Chemocentryx, personal fees from Retrophin, personal fees from Novartis, personal feesfromOmeros,personalfeesfromMorphosys,personalfeesfrom EMD Serono, personal fees from Bristol Myers Squibb, personal fees from Janssen, personal fees from AstraZeneca, nonfinancial support from the Lupus Foundation of America, and grants from the National Institutes of Health outside the submitted work. Dr. Wilkie reportsspeakershonorariaforBaxterandFreseniusandconsultancy work for Triomed. All remaining authors have nothing to disclose.
Publisher Copyright:
© 2020 by the American Society of Nephrology.
PY - 2020/5/7
Y1 - 2020/5/7
N2 - 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.
AB - 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.
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U2 - 10.2215/CJN.13101019
DO - 10.2215/CJN.13101019
M3 - Article
C2 - 32354728
AN - SCOPUS:85084389065
VL - 15
SP - 673
EP - 684
JO - Clinical Journal of the American Society of Nephrology
JF - Clinical Journal of the American Society of Nephrology
SN - 1555-9041
IS - 5
ER -