Article Figures & Data
Figures
- 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).
- Figure 2.
Thematic schema indicating three themes that underpin the prioritization of major outcome groups.
Tables
- Table 1.
Characteristics of adult patients with glomerular disease and their caregivers who prioritized outcomes using focus groups with nominal group technique
Characteristic Australia, n=50 Hong Kong, n=22 United Kingdom, n=29 United States, n=33 All, N=134 Patient 38 (76) 16 (73) 24 (83) 23 (70) 101 (75) Caregiver or family 12 (24) 6 (27) 5 (17) 10 (30) 33 (25) Sex Men 29 (58) 13 (59) 14 (48) 10 (30) 66 (49) Women 21 (42) 9 (41) 15 (52) 23 (70) 68 (51) Age group, yr 18–39 14 (28) 3 (14) 4 (14) 11 (33) 32 (24) 40–59 20 (40) 15 (68) 8 (28) 14 (42) 57 (43) 60–79 16 (32) 4 (18) 16 (55) 6 (18) 42 (32) >80 — — 1 (3) 1 (3) 2 (2) Ethnicity White/European 34 (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) Other 3 (6) — 1 (3) 2 (6) 6 (4) Educational attainmenta Primary school 4 (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/diploma 9 (24) — 7 (29) 6 (26) 22 (22) University degree 14 (37) 6 (38) 7 (29) 3 (13) 30 (30) Employmenta Full time or part time 22 (58) 8 (50) 6 (25) 4 (17) 40 (40) Student 1 (3) — — 3 (13) 4 (4) Not employed 4 (11) 4 (25) 3 (13) 10 (43) 21 (21) Other/retired 11 (29) 4 (25) 14 (58) 5 (22) 34 (34) Type of glomerular diseasea Lupus nephritis 6 (16) 2 (13) 6 (25) 4 (17) 18 (18) Vasculitis 6 (16) — 7 (29) 5 (22) 18 (18) IgA nephropathy 10 (26) 5 (31) 2 (8) 1 (4) 18 (18) FSGS 6 (16) — — 4 (17) 10 (10) Membranous nephropathy 3 (8) 1 (6) 1 (4) 1 (4) 6 (6) Minimal change nephropathy 2 (5) — 1 (4) 2 (9) 5 (5) MPGN 1 (3) — — 5 (22) 6 (6) C3 glomerulopathy 2 (5) — 3 (13) — 5 (5) Anti-GBM disease 1 (3) — — — 1 (1) IgG4-related disease 1 (3) — — — 1 (1) Years since diagnosisa ≤2 11 (29) 1 (6) 8 (33) 10 (43) 30 (30) 3–11 14 (37) 3 (19) 7 (29) 7 (30) 31 (31) ≥12 13 (34) 11 (69) 6 (25) 4 (17) 34 (34) Immunosuppression exposurea Any 30 (79) 9 (56) 17 (71) 17 (74) 73 (74) Corticosteroids 26 (68) 7 (44) 14 (58) 13 (57) 60 (60) Antiproliferative/calcineurin inhibitor 20 (53) 3 (19) 12 (50) 6 (26) 41 (41) Cyclophosphamide 9 (24) — 6 (25) 12 (52) 27 (27) Plasma exchange 7 (18) — 5 (21) 5 (22) 17 (17) Biologic agent 2 (5) — 3 (13) 2 (9) 7 (7) Stage of kidney diseasea CKD 31 (82) 4 (25) 13 (54) 18 (78) 66 (65) Hemodialysis 3 (8) 3 (19) 3 (13) 5 (22) 14 (14) Peritoneal dialysis 2 (5) 8 (50) — 3 (13) 13 (13) Living donor transplant 1 (3) 1 (6) 1 (4) 1 (4) 4 (4) Deceased donor transplant 1 (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.
Subthemes Illustrative 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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Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers
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