Identifying outcomes important to patients with glomerular disease and their caregivers

Simon A. Carter; Talia Gutman; Charlotte Logeman; Dan Cattran; Liz Lightstone; Arvind Bagga; Sean J. Barbour; Jonathan Barratt; John Boletis; Dawn Caster; Rosanna Coppo; Fernando C. Fervenza; Ju¨Rgen Floege; Michelle Hladunewich; Jonathan J. Hogan; A. Richard Kitching; Richard A. Lafayette; Ana Malvar; Jai Radhakrishnan; Brad H. Rovin; Nicole Scholes-Robertson; He´Rnan Trimarchi; Hong Zhang; Karolis Azukaitis; Yeoungjee Cho; Andrea K. Viecelli; Louese Dunn; David Harris; David W. Johnson; Peter G. Kerr; Paul Laboi; Jessica Ryan; Jenny I. Shen; Lorena Ruiz; Angela Yee Moon Wang; Achilles Hoi Kan Lee; Samuel Fung; Matthew Ka Hang Tong; Armando Teixeira-Pinto; Martin Wilkie; Stephen I. Alexander; Jonathan C. Craig; Allison Tong

doi:10.2215/CJN.13101019

Identifying outcomes important to patients with glomerular disease and their caregivers

Simon A. Carter, Talia Gutman, Charlotte Logeman, Dan Cattran, Liz Lightstone, Arvind Bagga, Sean J. Barbour, Jonathan Barratt, John Boletis, Dawn Caster, Rosanna Coppo, Fernando C. Fervenza, Ju¨Rgen Floege, Michelle Hladunewich, Jonathan J. Hogan, A. Richard Kitching, Richard A. Lafayette, Ana Malvar, Jai Radhakrishnan, Brad H. RovinNicole Scholes-Robertson, He´Rnan Trimarchi, Hong Zhang, Karolis Azukaitis, Yeoungjee Cho, Andrea K. Viecelli, Louese Dunn, David Harris, David W. Johnson, Peter G. Kerr, Paul Laboi, Jessica Ryan, Jenny I. Shen, Lorena Ruiz, Angela Yee Moon Wang, Achilles Hoi Kan Lee, Samuel Fung, Matthew Ka Hang Tong, Armando Teixeira-Pinto, Martin Wilkie, Stephen I. Alexander, Jonathan C. Craig, Allison Tong

Nephrology and Hypertension

Research output: Contribution to journal › Article › peer-review

4 Scopus citations

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.

Original language	English (US)
Pages (from-to)	673-684
Number of pages	12
Journal	Clinical Journal of the American Society of Nephrology
Volume	15
Issue number	5
DOIs	https://doi.org/10.2215/CJN.13101019
State	Published - May 7 2020

ASJC Scopus subject areas

Epidemiology
Critical Care and Intensive Care Medicine
Nephrology
Transplantation

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10.2215/CJN.13101019

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Carter, S. A., Gutman, T., Logeman, C., Cattran, D., Lightstone, L., Bagga, A., Barbour, S. J., Barratt, J., Boletis, J., Caster, D., Coppo, R., Fervenza, F. C., Floege, JR., Hladunewich, M., Hogan, J. J., Richard Kitching, A., Lafayette, R. A., Malvar, A., Radhakrishnan, J., ... Tong, A. (2020). Identifying outcomes important to patients with glomerular disease and their caregivers. Clinical Journal of the American Society of Nephrology, 15(5), 673-684. https://doi.org/10.2215/CJN.13101019

Identifying outcomes important to patients with glomerular disease and their caregivers. / Carter, Simon A.; Gutman, Talia; Logeman, Charlotte; Cattran, Dan; Lightstone, Liz; Bagga, Arvind; Barbour, Sean J.; Barratt, Jonathan; Boletis, John; Caster, Dawn; Coppo, Rosanna; Fervenza, Fernando C.; Floege, Ju¨Rgen; Hladunewich, Michelle; Hogan, Jonathan J.; Richard Kitching, A.; Lafayette, Richard A.; Malvar, Ana; Radhakrishnan, Jai; Rovin, Brad H.; Scholes-Robertson, Nicole; Trimarchi, He´Rnan; Zhang, Hong; Azukaitis, Karolis; Cho, Yeoungjee; Viecelli, Andrea K.; Dunn, Louese; Harris, David; Johnson, David W.; Kerr, Peter G.; Laboi, Paul; Ryan, Jessica; Shen, Jenny I.; Ruiz, Lorena; Wang, Angela Yee Moon; Lee, Achilles Hoi Kan; Fung, Samuel; Tong, Matthew Ka Hang; Teixeira-Pinto, Armando; Wilkie, Martin; Alexander, Stephen I.; Craig, Jonathan C.; Tong, Allison.

In: Clinical Journal of the American Society of Nephrology, Vol. 15, No. 5, 07.05.2020, p. 673-684.

Research output: Contribution to journal › Article › peer-review

Carter, SA, Gutman, T, Logeman, C, Cattran, D, Lightstone, L, Bagga, A, Barbour, SJ, Barratt, J, Boletis, J, Caster, D, Coppo, R, Fervenza, FC, Floege, JR, Hladunewich, M, Hogan, JJ, Richard Kitching, A, Lafayette, RA, Malvar, A, Radhakrishnan, J, Rovin, BH, Scholes-Robertson, N, Trimarchi, HR, Zhang, H, Azukaitis, K, Cho, Y, Viecelli, AK, Dunn, L, Harris, D, Johnson, DW, Kerr, PG, Laboi, P, Ryan, J, Shen, JI, Ruiz, L, Wang, AYM, Lee, AHK, Fung, S, Tong, MKH, Teixeira-Pinto, A, Wilkie, M, Alexander, SI, Craig, JC & Tong, A 2020, 'Identifying outcomes important to patients with glomerular disease and their caregivers', Clinical Journal of the American Society of Nephrology, vol. 15, no. 5, pp. 673-684. https://doi.org/10.2215/CJN.13101019

Carter, Simon A. ; Gutman, Talia ; Logeman, Charlotte ; Cattran, Dan ; Lightstone, Liz ; Bagga, Arvind ; Barbour, Sean J. ; Barratt, Jonathan ; Boletis, John ; Caster, Dawn ; Coppo, Rosanna ; Fervenza, Fernando C. ; Floege, Ju¨Rgen ; Hladunewich, Michelle ; Hogan, Jonathan J. ; Richard Kitching, A. ; Lafayette, Richard A. ; Malvar, Ana ; Radhakrishnan, Jai ; Rovin, Brad H. ; Scholes-Robertson, Nicole ; Trimarchi, He´Rnan ; Zhang, Hong ; Azukaitis, Karolis ; Cho, Yeoungjee ; Viecelli, Andrea K. ; Dunn, Louese ; Harris, David ; Johnson, David W. ; Kerr, Peter G. ; Laboi, Paul ; Ryan, Jessica ; Shen, Jenny I. ; Ruiz, Lorena ; Wang, Angela Yee Moon ; Lee, Achilles Hoi Kan ; Fung, Samuel ; Tong, Matthew Ka Hang ; Teixeira-Pinto, Armando ; Wilkie, Martin ; Alexander, Stephen I. ; Craig, Jonathan C. ; Tong, Allison. / Identifying outcomes important to patients with glomerular disease and their caregivers. In: Clinical Journal of the American Society of Nephrology. 2020 ; Vol. 15, No. 5. pp. 673-684.

@article{6e5cb004f4d74c54a40630d286a69c1b,

title = "Identifying outcomes important to patients with glomerular disease and their caregivers",

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.",

author = "Carter, {Simon A.} and Talia Gutman and Charlotte Logeman and Dan Cattran and Liz Lightstone and Arvind Bagga and Barbour, {Sean J.} and Jonathan Barratt and John Boletis and Dawn Caster and Rosanna Coppo and Fervenza, {Fernando C.} and Ju¨Rgen Floege and Michelle Hladunewich and Hogan, {Jonathan J.} and {Richard Kitching}, A. and Lafayette, {Richard A.} and Ana Malvar and Jai Radhakrishnan and Rovin, {Brad H.} and Nicole Scholes-Robertson and He´Rnan Trimarchi and Hong Zhang and Karolis Azukaitis and Yeoungjee Cho and Viecelli, {Andrea K.} and Louese Dunn and David Harris and Johnson, {David W.} and Kerr, {Peter G.} and Paul Laboi and Jessica Ryan and Shen, {Jenny I.} and Lorena Ruiz and Wang, {Angela Yee Moon} and Lee, {Achilles Hoi Kan} and Samuel Fung and Tong, {Matthew Ka Hang} and Armando Teixeira-Pinto and Martin Wilkie and Alexander, {Stephen I.} and Craig, {Jonathan C.} and Allison Tong",

note = "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. 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.",

year = "2020",

month = may,

day = "7",

doi = "10.2215/CJN.13101019",

language = "English (US)",

volume = "15",

pages = "673--684",

journal = "Clinical Journal of the American Society of Nephrology",

issn = "1555-9041",

publisher = "American Society of Nephrology",

number = "5",

}

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: 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. 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.

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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DO - 10.2215/CJN.13101019

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JO - Clinical Journal of the American Society of Nephrology

JF - Clinical Journal of the American Society of Nephrology

SN - 1555-9041

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