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Original ArticlesGlomerular and Tubulointerstitial Diseases
Open Access

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 and on behalf of the SONG-GD Investigators
CJASN May 2020, 15 (5) 673-684; DOI: https://doi.org/10.2215/CJN.13101019
Simon A. Carter
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Talia Gutman
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Charlotte Logeman
2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Dan Cattran
3Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
4Toronto General Research Institute, Toronto, Ontario, Canada
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Liz Lightstone
5Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom
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Arvind Bagga
6Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India
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Sean J. Barbour
7Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada
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Jonathan Barratt
8Department of Infection, Immunity and Inflammation, University of Leicester, Leicester, United Kingdom
9John Walls Renal Unit, Leicester General Hospital, Leicester, United Kingdom
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John Boletis
10Nephrology Department and Renal Transplantation Unit, Medical School, University of Athens, Laiko Hospital, Athens, Greece
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Dawn Caster
11Division of Nephrology, University of Louisville, Kentucky, Louisville
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Rosanna Coppo
12Fondazione Ricerca Molinette, Regina Margherita Hospital, Turin, Italy
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Fernando C. Fervenza
13Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota
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Jürgen Floege
14Department of Nephrology and Clinical Immunology, Rheinisch-Westfälische Technische Hochschule University Hospital, Aachen, Germany
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Michelle Hladunewich
3Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
15Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
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Jonathan J. Hogan
16Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania
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A. Richard Kitching
17Department of Nephrology, Monash Health, Clayton, Victoria, Australia
18Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia
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Richard A. Lafayette
19Stanford University Medical Center, Stanford, California
20Division of Nephrology, Department of Medicine, Stanford University, Stanford, California
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Ana Malvar
21Nephrology, Hospital Fernández, Buenos Aires, Argentina
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Jai Radhakrishnan
22Colombia University Medical Center, New York, New York
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Brad H. Rovin
23Division of Nephrology, Department of Internal Medicine, Ohio State University Wexner Medical Center, Columbus, Ohio
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Nicole Scholes-Robertson
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Hérnan Trimarchi
24Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina
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Hong Zhang
25Renal Division, Peking University First Hospital, Beijing, China
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Karolis Azukaitis
26Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania
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Yeoungjee Cho
27Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia
28Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia
29Translational Research Institute, Brisbane, Queensland, Australia
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Andrea K. Viecelli
27Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia
28Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia
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Louese Dunn
30Sheffield Kidney Institute, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom
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David Harris
31Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia
32Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
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David W. Johnson
27Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia
28Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia
29Translational Research Institute, Brisbane, Queensland, Australia
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Peter G. Kerr
18Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia
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Paul Laboi
33Department of Nephrology, York Hospital, York, United Kingdom
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Jessica Ryan
17Department of Nephrology, Monash Health, Clayton, Victoria, Australia
18Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia
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Jenny I. Shen
34Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor–University of California, Los Angeles Medical Center, Torrance, California
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Lorena Ruiz
34Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor–University of California, Los Angeles Medical Center, Torrance, California
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Angela Yee-Moon Wang
35Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, China
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Achilles Hoi Kan Lee
36Department of Medicine, Tuen Mun Hospital, Hong Kong, China
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Samuel Fung
37Department of Medicine and Geriatrics, Princess Margaret Hospital, Hong Kong, China
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Matthew Ka-Hang Tong
38Department of Medicine and Geriatrics, Pok Oi Hospital, Hong Kong, China
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Armando Teixeira-Pinto
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Martin Wilkie
39Department of Nephrology, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom
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Stephen I. Alexander
2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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Jonathan C. Craig
40College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia
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Allison Tong
1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
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    Figure 1.

    Kidney health, mortality and patient-reported outcomes were the most highly prioritized out of 58 outcomes ranked by importance score (error bars represent 95% confidence interval).

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    Figure 2.

    Thematic schema indicating three themes that underpin the prioritization of major outcome groups.

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    Table 1.

    Characteristics of adult patients with glomerular disease and their caregivers who prioritized outcomes using focus groups with nominal group technique

    CharacteristicAustralia, n=50Hong Kong, n=22United Kingdom, n=29United States, n=33All, N=134
    Patient38 (76)16 (73)24 (83)23 (70)101 (75)
    Caregiver or family12 (24)6 (27)5 (17)10 (30)33 (25)
    Sex
     Men29 (58)13 (59)14 (48)10 (30)66 (49)
     Women21 (42)9 (41)15 (52)23 (70)68 (51)
    Age group, yr
     18–3914 (28)3 (14)4 (14)11 (33)32 (24)
     40–5920 (40)15 (68)8 (28)14 (42)57 (43)
     60–7916 (32)4 (18)16 (55)6 (18)42 (32)
     >80——1 (3)1 (3)2 (2)
    Ethnicity
     White/European34 (68)—24 (83)3 (9)61 (46)
     Asian (Central, South, East)13 (26)22 (100)1 (3)2 (6)38 (28)
     Hispanic——1 (3)22 (67)23 (17)
     African/black——2 (7)4 (12)6 (4)
     Other3 (6)—1 (3)2 (6)6 (4)
    Educational attainmenta
     Primary school4 (11)4 (25)5 (21)8 (35)21 (21)
     Secondary school (grade 10)5 (13)3 (19)1 (4)1 (4)10 (10)
     Secondary school (grade 12)6 (16)3 (19)2 (8)5 (22)16 (16)
     Certificate/diploma9 (24)—7 (29)6 (26)22 (22)
     University degree14 (37)6 (38)7 (29)3 (13)30 (30)
    Employmenta
     Full time or part time22 (58)8 (50)6 (25)4 (17)40 (40)
     Student1 (3)——3 (13)4 (4)
     Not employed4 (11)4 (25)3 (13)10 (43)21 (21)
     Other/retired11 (29)4 (25)14 (58)5 (22)34 (34)
    Type of glomerular diseasea
     Lupus nephritis6 (16)2 (13)6 (25)4 (17)18 (18)
     Vasculitis6 (16)—7 (29)5 (22)18 (18)
     IgA nephropathy10 (26)5 (31)2 (8)1 (4)18 (18)
     FSGS6 (16)——4 (17)10 (10)
     Membranous nephropathy3 (8)1 (6)1 (4)1 (4)6 (6)
     Minimal change nephropathy2 (5)—1 (4)2 (9)5 (5)
     MPGN1 (3)——5 (22)6 (6)
     C3 glomerulopathy2 (5)—3 (13)—5 (5)
     Anti-GBM disease1 (3)———1 (1)
     IgG4-related disease1 (3)———1 (1)
    Years since diagnosisa
     ≤211 (29)1 (6)8 (33)10 (43)30 (30)
     3–1114 (37)3 (19)7 (29)7 (30)31 (31)
     ≥1213 (34)11 (69)6 (25)4 (17)34 (34)
    Immunosuppression exposurea
     Any30 (79)9 (56)17 (71)17 (74)73 (74)
     Corticosteroids26 (68)7 (44)14 (58)13 (57)60 (60)
     Antiproliferative/calcineurin inhibitor20 (53)3 (19)12 (50)6 (26)41 (41)
     Cyclophosphamide9 (24)—6 (25)12 (52)27 (27)
     Plasma exchange7 (18)—5 (21)5 (22)17 (17)
     Biologic agent2 (5)—3 (13)2 (9)7 (7)
    Stage of kidney diseasea
     CKD31 (82)4 (25)13 (54)18 (78)66 (65)
     Hemodialysis3 (8)3 (19)3 (13)5 (22)14 (14)
     Peritoneal dialysis2 (5)8 (50)—3 (13)13 (13)
     Living donor transplant1 (3)1 (6)1 (4)1 (4)4 (4)
     Deceased donor transplant1 (3)5 (31)4 (17)1 (4)11 (11)
    • MPGN, membranoproliferative GN; GBM, glomerular basement membrane.

    • ↵a Patients only. May not sum to totals because some categories represent overlapping experience. Thirteen patients did not know their type of glomerular disease. One patient was missing for age; two patients had missing data for education and immunosuppression. Six patients had missing years since diagnosis; six patients had data missing for kidney disease stage.

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    Table 2.

    Selected illustrative quotations for the themes and subthemes

    SubthemesIllustrative Quotations
    Constraining day-to-day existence
     Permeating and confining daily living“This sickness is just killing me, I couldn’t focus on doing—I’m running a business myself, I just can’t get focused on anything. This memory thing is bothering me as well, because I think I can’t focus on anything, I’m not able to remember anything.” —Patient (man), Hong Kong
     Permeating and confining daily living“I’m very anxious all the time. It’s actually created almost a mental problem within me, of anxiety. I think that’s probably my worst side effect of having kidney disease.” —Patient (woman), Australia
     Permeating and confining daily living“I put life participation because I know that looking from the outside, I know [his kidney disease] stops [him] from thinking bigger…Although that’s really big, there’s this life that has to happen at the same time.” —Caregiver (woman), Australia
     Altered appearance eroding self-confidence“People couldn’t recognize me. I walked past old colleagues and had to introduce myself again because they couldn’t believe I was the same person.” —Patient (woman), Australia
     Altered appearance eroding self-confidence“It has a knock-on effect on your confidence because you lose hair. You lose confidence, and that’s very important. Self-esteem.” —Patient (woman), United States
     Altered appearance eroding self-confidence“When you go out you look quite horrible, you feel quite horrible. Particularly when your steroid dose goes up really high and you get that real moon face. It’s just awful. How do you live with that?” —Patient (woman), Australia
     Trauma of past events“If you’ve not experienced [dialysis] you can’t possibly comprehend how difficult it is.” —Patient (woman), United Kingdom
     Trauma of past events“The reason why we all have slightly different views as to what is one, two, three is because those are the things which impacted us the most when we got diagnosed with that condition” —Caregiver (man), Australia
     Trauma of past events“Yeah, keeping it away, because I don’t want to go through the hell again…that was probably one of the worst nights of my life.” —Patient (man), Australia
     Loss of valued social and work opportunities“I was going to do my job. But I couldn’t do it, just too exhausted. I knew that I couldn’t fulfill the role that I was doing, so very hard for me to say that I couldn’t go back to work, very hard. I found that really quite emotional time then.” —Patient (woman), United Kingdom
     Loss of valued social and work opportunities“I think it’s like people look at you and think oh, there’s nothing wrong with you. You’re not sick…You’re tired again, what’s wrong with you? Oh, you’re sick again, what’s wrong with you? They just don’t get it.” —Patient (woman), Australia
     Loss of valued social and work opportunities“I lost my job. It was huge for me. I was doing a lot of hours there as well, and I was constantly tired, but I loved it. I wasn’t as tired as I am now, but yeah, that really, really hurt, that they did that to me.” —Patient (woman), Australia
     Undermining family roles and relationships“I picked death, because now I’m fine, but there was a moment, when I saw how my children and grandchildren were affected by my condition, that I thought it would be better if I died. They would have to accept it if I died.” —Patient (woman), United States
     Undermining family roles and relationships“My husband actually has a man cave now and he doesn’t even live in my house. He said ‘I can’t live with you.’” —Patient (woman) Australia
     Undermining family roles and relationships“When I get sick I can’t help anybody. I can’t even help myself. And when she sees me being sick, that makes her more anxious, and that puts pressure on her. Then my father-in-law not being well, he then gets anxious. It’s just a cycle that keeps going round and round, so it does make it hard.”—Patient (woman), Australia
    Impaired agency and control over health
     Demoralizing loss of freedom“I can’t do anything except take medicine. I can only follow the instructions, taking low salts, low protein diets. There’s nothing more I can do. In other words, I can’t control. It seems I can’t control the whole thing.” —Patient (man), Hong Kong
     Demoralizing loss of freedom“When you’ve been in there a few times, you kind of feel constrained or imprisoned. You just want to be able to walk out and do something else.” —Patient (man), Australia
     Demoralizing loss of freedom“I say ‘what choice?’ They say, you have it or else you die…I think well, I better have it then.” —Patient (woman), United Kingdom
     Fear of unexpected bodily harms“Straight into hospital…dialysis for another 4 mo after I came out. But then, it just stopped. Stopped the dialysis for 2.5 yr. But it was a big surprise, because I didn’t feel sick. I felt fine. I was working like a madman, next day you’re in hospital and they’re saying that you’re really, really sick. I don’t feel sick.” —Patient (man), Australia
     Fear of unexpected bodily harms“They said 13% for him…to me that’s like my battery is low on my phone. You think he shouldn’t be able to, I would think he’d be in bed at that point, but then you’re working. They put these numbers out there” —Caregiver (woman), United States
     Fear of unexpected bodily harms“I didn’t think it was that serious. Got my blood test done, went to the doctor, the doctor said that this is stage four kidney disease. There were no symptoms. I’m still fine, I’m not on dialysis yet, but I’m currently running at 10%. It was a big shock.” —Patient (woman), Australia
     Gaps in care“Prednisolone is the killer, because that’s how I broke my back. I wasn’t told by the specialist or the GP when I was on Prednisolone, and then I did the weightlifting. I cracked my L2 and L5. Later on they told me oh, that could affect your bone. It’s too late.” —Patient (man), Australia
     Gaps in care“They didn’t say okay, you can’t have babies. Thanks for letting me know, you know?” —Patient (man), United Kingdom
     Gaps in care“We manage disease, but we don’t actually make people healthy…the pillars of health are diet, sleep, movement and exercise and stress management, and that if you get those things right, the body has an amazing capacity to heal itself if you nourish all of those things.” —Caregiver (woman), Australia
     Managing triggers and driving factors“I picked kidney function as number 1, because all the other conditions come from kidney failure, and if your kidneys are working, you won’t have any of that.” —Patient (woman), United Kingdom
     Managing triggers and driving factors“In my case stress, anxiety and depression. I have anger issues and if I keep them under control my medical condition will get better. Because if I’m able to control those, I’ll be able to control my medical condition. In the second place, my ability to work, my finances, if I’m able to control that, I’ll have a positive response to my treatment. Death is the least important to me.” —Patient (man), United States
     Managing triggers and driving factors“Dialysis and death doesn’t really worry me because it’s something I can’t control. Anxiety and stress. Time to dialysis and transplant is uncontrollable…The stress of worrying about it is more important…It’s the stress and anxiety of not being able to control something.” —Patient (man), Australia
    Threats to future self and family
     Adaptability to diverging expectations“[Anxiety, cognitive function] Your life changes completely when you get all this crap. Completely changes. Changes you. I don’t feel like I am the same person. My brain doesn’t work anymore.” —Patient (woman), United Kingdom
     Adaptability to diverging expectations“The dialysis word is a very scary word…I went you know what, we can live with this. It’s not something that’s going to define my life completely, there are still going to be options.” —Patient (woman), United Kingdom
     Adaptability to diverging expectations“[Life participation] It was more like, you’re not going to go back to that. You need to learn how to go around and come back. To me, the first couple years I was angry. This is really an inconvenience. That’s why my first word was frustrated.” —Patient (woman), United States
     Endangering life goals“My mum’s a teacher and she’s been teaching for 45 yr, and I would love to be able to do that. I think that’s why it’s different. It’s not a usual activity for me, it’s something else.” —Patient (woman), Australia
     Endangering life goals“We found out when I was 30 wk pregnant…I was hospitalized. Sorry, no more children. That’s the end. That was a big impact for us.” —Patient (woman), Australia
     Endangering life goals“You can’t work, so your income isn’t what you envisaged it was going to be…when you thought you were contributing to your pension. All of a sudden it’s wiped out.” —Patient (man), United Kingdom
     Inevitable, irreversible consequences“Eventually you’re going to end up with dialysis or transplant. Everything else fits in around that. My end result is this.” —Patient (man), Australia
     Inevitable, irreversible consequences“Dialysis in 1 yr time, probably a kidney transplant in future. That will be my story.” —Patient (man), Australia
     Inevitable, irreversible consequences“I’m unlucky…The doctor told me that the kidney wouldn’t get well by itself. It’ll just get worse and worse. I feel very worried about that.” —Patient (woman), Hong Kong
     Uncertainty and unpredictable hazards“You definitely need to know whether it’s going to get back to that remission again, or you’re just going to continue on having these ups and downs all the time.” —Patient (man), Australia
     Uncertainty and unpredictable hazards“When you’re on dialysis, anything could happen.” —Patient (woman), United States
     Uncertainty and unpredictable hazards“Predictability. I’m looking at it from my perspective as a mother and a caregiver. It affects the whole thing, like her future, her health status, financial-wise, whatever.” —Caregiver (woman), Australia

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Clinical Journal of the American Society of Nephrology: 15 (5)
Clinical Journal of the American Society of Nephrology
Vol. 15, Issue 5
May 07, 2020
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Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers
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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
CJASN May 2020, 15 (5) 673-684; DOI: 10.2215/CJN.13101019

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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
CJASN May 2020, 15 (5) 673-684; DOI: 10.2215/CJN.13101019
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