Journal article
Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study
Kidney international reports, Vol.5(10), pp.1679-1689
10/2020
DOI: 10.1016/j.ekir.2020.06.041
PMCID: PMC7569685
PMID: 33102960
Abstract
Prior cross-sectional studies suggest that health-related quality of life (HRQOL) worsens with more severe glomerular disease. This longitudinal analysis was conducted to assess changes in HRQOL with changing disease status.
Cure Glomerulonephropathy (CureGN) is a cohort of patients with minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, IgA vasculitis, or IgA nephropathy. HRQOL was assessed at enrollment and follow-up visits 1 to 3 times annually for up to 5 years with the Patient-Reported Outcomes Measurement Information System (PROMIS). Global health, anxiety, and fatigue domains were measured in all; mobility was measured in children; and sleep-related impairment was measured in adults. Linear mixed effects models were used to evaluate HRQOL responsiveness to changes in disease status.
A total of 469 children and 1146 adults with PROMIS scores were included in the analysis. HRQOL improved over time in nearly all domains, though group-level changes were modest. Edema was most consistently associated with worse HRQOL across domains among children and adults. A greater number of symptoms also predicted worse HRQOL in all domains. Sex, age, obesity, and serum albumin were associated with some HRQOL domains. The estimated glomerular filtration rate (eGFR) was only associated with fatigue and adult physical health; proteinuria was not associated with any HRQOL domain in adjusted models.
HRQOL measures were responsive to changes in disease activity, as indicated by edema. HRQOL over time was not predicted by laboratory-based markers of disease. Patient-reported edema and number of symptoms were the strongest predictors of HRQOL, highlighting the importance of the patient experience in glomerular disease. HRQOL outcomes inform understanding of the patient experience for children and adults with glomerular diseases.
Details
- Title: Subtitle
- Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study
- Creators
- Ali GharaviWooin AhnGerald B. AppelRupali S. AvasareRevekka BabayevIbrahim BatalAndrew S. BombackEric BrownEric S. CampenotPietro Canetta - Columbia UniversityBrenda ChanVivette D. D’AgatiBartosz ForoncewiczGian Marco GhiggeriWilliam H. HinesNamrata G. JainKrzysztof KirylukFangming LinFrancesca LuganiMaddalena MarasaGlen MarkowitzSumit MohanKrzysztof MuchaThomas L. NickolasJai RadhakrishnanMaya K. RaoRenu Regunathan-ShenkSimone Sanna-CherchiDominick SantorielloMichael B. StokesNatalie YuAnthony M. ValeriRonald ZvitiLarry A. GreenbaumWilliam E. SmoyerAmira Al-UzriIsa AshoorDiego AvilesRossana BaraccoJohn BarciaCraig BelshaMichael C. BraunAftab ChishtiDonna ClaesCarl CramerKeefe DavisElif ErkanDaniel FeigMichael FreundlichMelisha HannaGuillermo HidalgoAmrish JainMyda KhalidMahmoud KallashJerome C. LaneNisha MathewsCarla NesterCynthia PanHiren PatelAdelaide RevellRajasree SreedharanJulia SteinkeScott E. WenderferCraig S. WongRonald FalkWilliam CookVimal DerebailAgnes FogoAdil GasimTodd GehrRaymond HarrisJason KiddLouis-Philippe LaurinWill PendergraftVincent PichetteThomas Brian PowellMatthew B. RenfrowVirginie RoyalLawrence B. HolzmanSharon AdlerCharles AlpersShannon L. Murphy - University of North Carolina at Chapel HillRaed Bou MatarLaura Malaga DieguezJohn D. Mahan - Nationwide Children's HospitalElizabeth BrownMichael ChoiKevin MeyersKatherine M. DellJonathan P. Troost - University of MichiganAlicia NeuRam DukkipatiFernando C. FervenzaTarak Srivastava - University of Missouri–Kansas CityCrystal GadegbekuMichelle Marie O'ShaughnessyPatrick GipsonAmy J. Kogon - Children's Hospital of PhiladelphiaLeah HaselyJohn F. O’TooleYi Cai - Helen DeVos Children's HospitalSangeeta HingoraniMichelle A. HladunewichRulan ParekhJonathan HoganHeather ReichT. Keefe Davis - Washington University in St. LouisJ. Ashley JeffersonKenar JhaveriHilda Fernandez - Columbia UniversityKimberly ReidyDuncan B. JohnstoneAlessia Fornoni - University of MiamiFrederick KaskelAmy KoganHelbert RondonJeffrey KoppRasheed A. Gbadegesin - Duke UniversityKevin V. LemleyKamalanathan K. SambandamEmily Herreshoff - University of MichiganJohn R. SedorChristine B. SethnaPatrick H. Nachman - University of MinnesotaJeffrey SchellingBryce B. Reeve - Duke UniversityJohn C. SperatiDavid T. Selewski - University of MichiganAgnes Swiatecka-UrbanHoward TrachtmanChia-shi Wang - Emory UniversityJoseph WeisstuchOlga ZhdanovaSharon M. Bartosh - University of Wisconsin–MadisonDebbie S. Gipson - University of MichiganBrenda GillespieKatherine R. Tuttle - University of WashingtonMatthias KretzlerBruce M. RobinsonLaura MarianiMatthew WladkowskiLisa M. Guay-WoodfordCureGN Consortium
- Resource Type
- Journal article
- Publication Details
- Kidney international reports, Vol.5(10), pp.1679-1689
- DOI
- 10.1016/j.ekir.2020.06.041
- PMID
- 33102960
- PMCID
- PMC7569685
- NLM abbreviation
- Kidney Int Rep
- ISSN
- 2468-0249
- eISSN
- 2468-0249
- Publisher
- Elsevier Inc
- Grant note
- DOI: 10.13039/100000062, name: National Institute of Diabetes and Digestive and Kidney Diseases; DOI: 10.13039/100006108, name: National Center for Advancing Translational Sciences; DOI: 10.13039/100008269, name: Michigan Institute for Clinical and Health Research.
- Language
- English
- Date published
- 10/2020
- Academic Unit
- Nephrology, Dialysis and Transplantation; Stead Family Department of Pediatrics; Internal Medicine
- Record Identifier
- 9984353932302771
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