Development of an international Delphi survey to establish core outcome domains for trials in adults with glomerular disease

被引：5

作者：

Carter, Simon A. ^{[1
,2
]}

Logeman, Charlotte ^{[2
]}

Howell, Martin ^{[1
,2
]}

Cattran, Dan ^{[3
,4
]}

Lightstone, Liz ^{[5
]}

Bagga, Arvind ^{[6
]}

Barbour, Sean J. ^{[7
]}

Barratt, Jonathan ^{[8
,9
]}

Boletis, John ^{[10
,11
]}

Caster, Dawn J. ^{[12
]}

Coppo, Rosanna ^{[13
]}

Fervenza, Fernando C. ^{[14
]}

Floege, Jurgen ^{[15
]}

Hladunewich, Michelle A. ^{[3
,16
]}

Hogan, Jonathan J. ^{[17
]}

Kitching, A. Richard ^{[18
,19
]}

Lafayette, Richard A. ^{[20
]}

Malvar, Ana ^{[21
]}

Radhakrishnan, Jai ^{[22
]}

Rovin, Brad H. ^{[23
]}

Scholes-Robertson, Nicole ^{[1
,2
]}

Trimarchi, Hernan ^{[24
,25
]}

Zhang, Hong ^{[26
]}

Cho, Yeoungjee ^{[27
,28
,29
]}

Dunn, Louese ^{[30
]}

Gipson, Debbie S. ^{[31
]}

Liew, Adrian ^{[32
]}

Sautenet, Benedicte ^{[33
,34
]}

Viecelli, Andrea K. ^{[27
,28
]}

Harris, David ^{[35
,36
]}

Johnson, David W. ^{[27
,28
,29
]}

Wang, Angela Yee-Moon ^{[37
]}

Teixeira-Pinto, Armando ^{[1
,2
]}

Alexander, Stephen I. ^{[2
]}

Martin, Adam ^{[2
]}

Tong, Allison ^{[1
,2
]}

Craig, Jonathan C. ^{[38
]}

机构：

[1] Univ Sydney, Sydney Sch Publ Hlth, Sydney, NSW, Australia

[2] Childrens Hosp Westmead, Ctr Kidney Res, Sydney, NSW 2145, Australia

[3] Univ Toronto, Fac Med, Toronto, ON, Canada

[4] Toronto Gen Res Inst, Toronto, ON, Canada

[5] Imperial Coll London, Ctr Inflammatory Dis, Fac Med, London, England

[6] All India Inst Med Sci, Dept Pediat, New Delhi, India

[7] Univ British Columbia, Div Nephrol, Dept Med, Vancouver, BC, Canada

[8] Univ Leicester, Dept Cardiovasc Sci, Leicester, Leics, England

[9] Leicester Gen Hosp, John Walls Renal Unit, Leicester, Leics, England

[10] Univ Athens, Med Sch, Laiko Hosp, Nephrol Dept, Athens, Greece

[11] Univ Athens, Med Sch, Laiko Hosp, Renal Transplantat Unit, Athens, Greece

[12] Univ Louisville, Div Nephrol, Louisville, KY USA

[13] Regina Margherita Hosp, Fdn Ric Molinette, Turin, Italy

[14] Mayo Clin, Dept Internal Med, Div Nephrol & Hypertens, Rochester, MN USA

[15] Univ Hosp, Rhein Westfal Tech Hsch, Dept Nephrol & Clin Immunol, Aachen, Germany

[16] Sunnybrook Hlth Sci Ctr, Dept Med, Div Nephrol, Toronto, ON, Canada

[17] Univ Penn, Sch Med, Perelman Sch Med, Philadelphia, PA 19104 USA

[18] Monash Hlth, Dept Nephrol, Melbourne, Vic, Australia

[19] Monash Univ, Ctr Inflammatory Dis, Dept Med, Melbourne, Vic, Australia

[20] Stanford Univ, Med Ctr, Dept Med, Div Nephrol, Stanford, CA 94305 USA

[21] Hosp Fernandez, Dept Nephrol, Buenos Aires, DF, Argentina

[22] Columbia Univ, Med Ctr, Div Nephrol, New York, NY USA

[23] Ohio State Univ, Dept Internal Med, Div Nephrol, Wexner Med Ctr, Columbus, OH 43210 USA

[24] Hosp Britan Buenos Aires, Nephrol Serv, Buenos Aires, DF, Argentina

[25] Hosp Britan Buenos Aires, Kidney Transplantat Unit, Buenos Aires, DF, Argentina

[26] Peking Univ First Hosp, Renal Div, Beijing, Peoples R China

[27] Princess Alexandra Hosp, Dept Nephrol, Brisbane, Qld, Australia

[28] Univ Queensland, Australasian Kidney Trials Network, Brisbane, Qld, Australia

[29] Translat Res Inst, Brisbane, Qld, Australia

[30] Sheffield Teaching Hosp Natl Hlth Serv Fdn Trust, Sheffield Kidney Inst, Sheffield, S Yorkshire, England

[31] Univ Michigan, Dept Pediat, Ann Arbor, MI 48109 USA

[32] Mt Elizabeth Novena Hosp, Kidney & Transplant Practice, Singapore, Singapore

[33] Univ Tours, Fac Med, Tours, France

[34] Tours Hosp, Dept Nephrol & Clin Immunol, Tours, France

[35] Univ Sydney, Westmead Inst Med Res, Sydney, NSW, Australia

[36] Univ Sydney, Sydney Med Sch, Sydney, NSW, Australia

[37] Univ Hong Kong, Queen Mary Hosp, Dept Med, Hong Kong, Peoples R China

[38] Flinders Univ S Australia, Coll Med & Publ Hlth, Adelaide, SA, Australia

来源：

KIDNEY INTERNATIONAL | 2021年 / 100卷 / 04期

基金：

澳大利亚国家健康与医学研究理事会; 英国医学研究理事会; 美国国家卫生研究院;

关键词：

consensus; glomerulonephritis; patient outcome assessment; treatment outcome; trials; QUALITY-OF-LIFE; PATIENT-REPORTED OUTCOMES; KIDNEY-DISEASE; MEMBRANOUS NEPHROPATHY; REMISSION; TRANSPLANTATION; MORTALITY; BURDEN;

D O I：

10.1016/j.kint.2021.04.027

中图分类号：

R5 [内科学]; R69 [泌尿科学（泌尿生殖系疾病）];

学科分类号：

1002 ; 100201 ;

摘要：

Outcomes relevant to treatment decision-making are inconsistently reported in trials involving glomerular disease. Here, we sought to establish a consensus-derived set of critically important outcomes designed to be reported in all future trials by using an online, international two-round Delphi survey in English. To develop this, patients with glomerular disease, caregivers and health professionals aged 18 years and older rated the importance of outcomes using a Likert scale and a Best-Worst scale. The absolute and relative importance was assessed and comments were analyzed thematically. Of 1198 participants who completed Round 1, 734 were patients/ caregivers while 464 were health care professionals from 59 countries. Of 700 participants that completed Round 2, 412 were patients/caregivers and 288 were health care professionals. Need for dialysis or transplant, kidney function, death, cardiovascular disease, remission-relapse and life participation were the most important outcomes to patients/caregivers and health professionals. Patients/ caregivers rated patient-reported outcomes higher while health care professionals rated hospitalization, death and remission/relapse higher. Four themes explained the reasons for their priorities: confronting death and compounded suffering, focusing on specific targets in glomerular disease, preserving meaning in life, and fostering self-management. Thus, consistent reporting of these critically important outcomes in all trials involving glomerular disease is hoped to improve patient-centered decision-making.

引用

页码：881 / 893

页数：13

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