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; Jürgen Floege; Michelle Hladunewich; Jonathan J. Hogan; A. Richard Kitching; Richard A. Lafayette; Ana Malvar; Jai Radhakrishnan; Brad H. Rovin; Nicole Scholes-Robertson; Hérnan 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; on behalf of the SONG-GD Investigators

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, Jürgen Floege, Michelle Hladunewich, Jonathan J. Hogan, A. Richard Kitching, Richard A. Lafayette, Ana Malvar, Jai Radhakrishnan, Brad H. RovinNicole Scholes-Robertson, Hérnan 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, on behalf of the SONG-GD Investigators

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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, & measurementsWe 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 outcomes 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
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
Publication status	Published - 7 May 2020

Keywords

Anxiety
blood pressure
Blood Pressure Determination
Caregivers
Data Accuracy
Decision Making
Family Relations
Fatigue
Focus Groups
Infections
renal dialysis
Shared

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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, J., Hladunewich, M., Hogan, J. J., Kitching, A. R., Lafayette, R. A., Malvar, A., Radhakrishnan, J., ... on behalf of the SONG-GD Investigators (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

@article{2aa0a4804f3a455fb6620e4b0accdbda,

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, & measurementsWe 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 outcomes 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.",

keywords = "Anxiety, blood pressure, Blood Pressure Determination, Caregivers, Data Accuracy, Decision Making, Family Relations, Fatigue, Focus Groups, Infections, renal dialysis, Shared",

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 J{\"u}rgen Floege and Michelle Hladunewich and Hogan, {Jonathan J.} and Kitching, {A. Richard} and Lafayette, {Richard A.} and Ana Malvar and Jai Radhakrishnan and Rovin, {Brad H.} and Nicole Scholes-Robertson and H{\'e}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 and {on behalf of the SONG-GD Investigators}",

year = "2020",

month = may,

day = "7",

doi = "10.2215/CJN.13101019",

language = "English",

volume = "15",

pages = "673--684",

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

issn = "1555-9041",

publisher = "American Society of Nephrology",

number = "5",

}

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, J, Hladunewich, M, Hogan, JJ, Kitching, AR, Lafayette, RA, Malvar, A, Radhakrishnan, J, Rovin, BH, Scholes-Robertson, N, Trimarchi, H, 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 & on behalf of the SONG-GD Investigators 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

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, Jürgen

AU - Hladunewich, Michelle

AU - Hogan, Jonathan J.

AU - Kitching, A. Richard

AU - Lafayette, Richard A.

AU - Malvar, Ana

AU - Radhakrishnan, Jai

AU - Rovin, Brad H.

AU - Scholes-Robertson, Nicole

AU - Trimarchi, Hérnan

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

AU - on behalf of the SONG-GD Investigators

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, & measurementsWe 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 outcomes 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, & measurementsWe 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 outcomes 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.

KW - Anxiety

KW - blood pressure

KW - Blood Pressure Determination

KW - Caregivers

KW - Data Accuracy

KW - Decision Making

KW - Family Relations

KW - Fatigue

KW - Focus Groups

KW - Infections

KW - renal dialysis

KW - Shared

UR - http://www.scopus.com/inward/record.url?scp=85084389065&partnerID=8YFLogxK

U2 - 10.2215/CJN.13101019

DO - 10.2215/CJN.13101019

M3 - Article

C2 - 32354728

AN - SCOPUS:85084389065

SN - 1555-9041

VL - 15

SP - 673

EP - 684

JO - Clinical Journal of the American Society of Nephrology

JF - Clinical Journal of the American Society of Nephrology

IS - 5

ER -

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

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Keywords

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