The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study

David T. Selewski; Jonathan P. Troost; Susan F. Massengill; Rasheed A. Gbadegesin; Larry A. Greenbaum; Ibrahim F. Shatat; Yi Cai; Gaurav Kapur; Diane Hebert; Michael J. Somers; Howard Trachtman; Priya Pais; Michael E. Seifert; Jens Goebel; Christine B. Sethna; John D. Mahan; Heather E. Gross; Emily Herreshoff; Yang Liu; Peter X. Song; Bryce B. Reeve; Darren A. DeWalt; Debbie S. Gipson

doi:10.1007/s00467-015-3074-x

The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study

David T. Selewski, Jonathan P. Troost, Susan F. Massengill, Rasheed A. Gbadegesin, Larry A. Greenbaum, Ibrahim F. Shatat, Yi Cai, Gaurav Kapur, Diane Hebert, Michael J. Somers, Howard Trachtman, Priya Pais, Michael E. Seifert, Jens Goebel, Christine B. Sethna, John D. Mahan, Heather E. Gross, Emily Herreshoff, Yang Liu, Peter X. SongBryce B. Reeve, Darren A. DeWalt, Debbie S. Gipson

Research output: Contribution to journal › Article › peer-review

40 Scopus citations

Abstract

Background: The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. Methods: This was a prospective study in which 127 children (age range 8–17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit. Results: The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p = 0.02) and PedsQL social functioning (p < 0.01). Conclusion: The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.

Original language	English
Pages (from-to)	1467-1476
Number of pages	10
Journal	Pediatric Nephrology
Volume	30
Issue number	9
DOIs	https://doi.org/10.1007/s00467-015-3074-x
State	Published - Sep 18 2015

Keywords

Children
Nephrotic syndrome
Patient-reported outcomes
Pediatrics
Quality of life

Access to Document

10.1007/s00467-015-3074-x

Cite this

Selewski, D. T., Troost, J. P., Massengill, S. F., Gbadegesin, R. A., Greenbaum, L. A., Shatat, I. F., Cai, Y., Kapur, G., Hebert, D., Somers, M. J., Trachtman, H., Pais, P., Seifert, M. E., Goebel, J., Sethna, C. B., Mahan, J. D., Gross, H. E., Herreshoff, E., Liu, Y., ... Gipson, D. S. (2015). The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study. Pediatric Nephrology, 30(9), 1467-1476. https://doi.org/10.1007/s00467-015-3074-x

@article{03a57708b18042c4ad7cabdfa3085c73,

title = "The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study",

abstract = "Background: The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL{\texttrademark} 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. Methods: This was a prospective study in which 127 children (age range 8–17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit. Results: The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p = 0.02) and PedsQL social functioning (p < 0.01). Conclusion: The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.",

keywords = "Children, Nephrotic syndrome, Patient-reported outcomes, Pediatrics, Quality of life",

author = "Selewski, {David T.} and Troost, {Jonathan P.} and Massengill, {Susan F.} and Gbadegesin, {Rasheed A.} and Greenbaum, {Larry A.} and Shatat, {Ibrahim F.} and Yi Cai and Gaurav Kapur and Diane Hebert and Somers, {Michael J.} and Howard Trachtman and Priya Pais and Seifert, {Michael E.} and Jens Goebel and Sethna, {Christine B.} and Mahan, {John D.} and Gross, {Heather E.} and Emily Herreshoff and Yang Liu and Song, {Peter X.} and Reeve, {Bryce B.} and DeWalt, {Darren A.} and Gipson, {Debbie S.}",

note = "Publisher Copyright: {\textcopyright} 2015, IPNA.",

year = "2015",

month = sep,

day = "18",

doi = "10.1007/s00467-015-3074-x",

language = "English",

volume = "30",

pages = "1467--1476",

journal = "Pediatric Nephrology",

issn = "0931-041X",

number = "9",

}

Selewski, DT, Troost, JP, Massengill, SF, Gbadegesin, RA, Greenbaum, LA, Shatat, IF, Cai, Y, Kapur, G, Hebert, D, Somers, MJ, Trachtman, H, Pais, P, Seifert, ME, Goebel, J, Sethna, CB, Mahan, JD, Gross, HE, Herreshoff, E, Liu, Y, Song, PX, Reeve, BB, DeWalt, DA & Gipson, DS 2015, 'The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study', Pediatric Nephrology, vol. 30, no. 9, pp. 1467-1476. https://doi.org/10.1007/s00467-015-3074-x

TY - JOUR

T1 - The impact of disease duration on quality of life in children with nephrotic syndrome

T2 - a Midwest Pediatric Nephrology Consortium study

AU - Selewski, David T.

AU - Troost, Jonathan P.

AU - Massengill, Susan F.

AU - Gbadegesin, Rasheed A.

AU - Greenbaum, Larry A.

AU - Shatat, Ibrahim F.

AU - Cai, Yi

AU - Kapur, Gaurav

AU - Hebert, Diane

AU - Somers, Michael J.

AU - Trachtman, Howard

AU - Pais, Priya

AU - Seifert, Michael E.

AU - Goebel, Jens

AU - Sethna, Christine B.

AU - Mahan, John D.

AU - Gross, Heather E.

AU - Herreshoff, Emily

AU - Liu, Yang

AU - Song, Peter X.

AU - Reeve, Bryce B.

AU - DeWalt, Darren A.

AU - Gipson, Debbie S.

PY - 2015/9/18

Y1 - 2015/9/18

N2 - Background: The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. Methods: This was a prospective study in which 127 children (age range 8–17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit. Results: The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p = 0.02) and PedsQL social functioning (p < 0.01). Conclusion: The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.

AB - Background: The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. Methods: This was a prospective study in which 127 children (age range 8–17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit. Results: The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p = 0.02) and PedsQL social functioning (p < 0.01). Conclusion: The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.

KW - Children

KW - Nephrotic syndrome

KW - Patient-reported outcomes

KW - Pediatrics

KW - Quality of life

UR - http://www.scopus.com/inward/record.url?scp=84939259277&partnerID=8YFLogxK

U2 - 10.1007/s00467-015-3074-x

DO - 10.1007/s00467-015-3074-x

M3 - Article

C2 - 25784017

AN - SCOPUS:84939259277

SN - 0931-041X

VL - 30

SP - 1467

EP - 1476

JO - Pediatric Nephrology

JF - Pediatric Nephrology

IS - 9

ER -

The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study

Abstract

Keywords

Access to Document

Other files and links

Fingerprint

Cite this