Background
Methods
Study design and participants
Collection of PRO data
Statistical analysis
Results
N(%), or Mean(std) | |
---|---|
Disease duration | |
Incident, n(%) | 60 (47) |
Prevalent, n(%) | 67 (53) |
Age | |
8–12 years, n(%) | 67 (53) |
13–17 years, n(%) | 60 (47) |
Female, n(%) | 44 (35) |
Race | |
White, n(%) | 65 (52) |
Black, n(%) | 36 (28) |
Asian, n(%) | 16 (13) |
Other, n(%) | 10 (8) |
Hispanic or Latino ethnicity, n(%) | 10 (8) |
Maternal Education | |
< High School, n(%) | 12 (9) |
High school, n(%) | 46 (36) |
2-Year Associate’s Degree, n(%) | 16 (13) |
4-Year College Degree, n(%) | 24 (19) |
Graduate Degree, n(%) | 7 (6) |
Unknown, n(%) | 22 (17) |
Obese, n(%) | 44 (35) |
Edema Present, n(%) | 96 (76) |
Hypertension, n(%) | 53 (42) |
Number of Symptoms, Mean(std) | 4 (3) |
Number of Medical Conditions, Mean(std) | 1 (1) |
Immunosuppressive therapy, n(%) | 99 (78) |
Emergency Department Visits in last 6 months (≥ 1 visit), n(%) | 49 (39) |
Hospitalizations in last 6 months (≥ 1 visit), n(%) | 58 (46) |
Estimated GFR (mL/min/1.73 m2), Mean(std) | 113 (48) |
Urine Protein:Creatinine, Mean(std) | 6.7 (7.1) |
Albumin, Mean(std) | 2.4 (1.0) |
Hemoglobin, Mean(std) | 13.3 (2.0) |
Number of medications, Mean(std)
|
3 (3)
|
Baseline | Event visit | Month 12 | |||||||
---|---|---|---|---|---|---|---|---|---|
N = 127 |
N = 112 |
N = 90 | |||||||
PROMIS | Mean(SD) | Clinically impaired N(%)* | Mean(SD) | Clinically impaired N(%)* | Mean(SD) | Clinically impaired N(%)* | F-value |
p-value | η2
|
Mobility | 46.3 (9.2) | 31 (25) | 50.8 (9.5) | 14 (13) | 52.4 (9.2) | 9 (10) | 12.81 | <0.001 | 0.074 |
Fatigue | 49.6 (12.6) | 29 (23) | 43.4 (12.7) | 9 (8) | 43.3 (13.4) | 11 (12) | 9.16 | <0.001 | 0.054 |
Pain Interference | 49.7 (11.1) | 24 (20) | 44.9 (11.2) | 7 (6) | 44.7 (10.9) | 10 (11) | 7.44 | <0.001 | 0.045 |
Depression | 49.7 (9.3) | 22 (18) | 45.2 (9.9) | 8 (7) | 46.2 (9.6) | 6 (7) | 7.04 | 0.001 | 0.042 |
Anxiety | 49.4 (10.6) | 23 (19) | 43.2 (11.5) | 11 (10) | 44.5 (10.7) | 7 (8) | 10.64 | <0.001 | 0.062 |
Peer Relationships | 48.6 (10.6) | 23 (19) | 50.4 (11.3) | 16 (15) | 51.7 (10.4) | 7 (8) | 2.15 | 0.12 | 0.013 |
PedsQL | |||||||||
Physical functioning | 69.3 (22.7) | 59 (47) | 79.1 (20.8) | 29 (27) | 81.5 (21.1) | 25 (28) | 10.04 | <0.001 | 0.059 |
Emotional functioning | 72.3 (22.1) | 61 (48) | 80.1 (20.9) | 33 (30) | 80.5 (20.9) | 27 (30) | 5.42 | 0.005 | 0.032 |
Social functioning | 80.6 (18.0) | 25 (20) | 84.0 (18.2) | 18 (17) | 85.2 (18.5) | 16 (18) | 1.91 | 0.15 | 0.012 |
School functioning | 63.7 (21.2) | 38 (35) | 76.9 (20.3) | 15 (16) | 74.7 (21.1) | 20 (25) | 11.57 | <0.001 | 0.076 |
Overall | 71.0 (17.0) | 44 (35) | 80.0 (17.1) | 21 (19) | 80.5 (18.2) | 20 (22) | 10.91 | <0.001 | 0.064 |
Peds QL Domains | |||||
---|---|---|---|---|---|
PROMIS Domain | Physical Functioning | Emotional Functioning | Social Functioning | School Functioning | Overall HRQOL |
Physical Functioning | |||||
Mobility | 0.60 | 0.39 | 0.45 | 0.37 | 0.60 |
Fatigue | −0.65 | −0.57 | −0.48 | −0.59 | −0.73 |
Pain Interference | −0.63 | −0.52 | −0.44 | −0.46 | −0.66 |
Emotional Functioning | |||||
Depressive Symptoms | −0.46 | −0.55 | −0.44 | −0.39 | −0.57 |
Anxiety | −0.51 | −0.68 | −0.35 | −0.51 | −0.64 |
Social Functioning | |||||
Peer Relationships | 0.13 | 0.18 | 0.11 | 0.10 | 0.16 |