Health-related quality of life in glomerular disease

Mahoney, Shannon; Kogon, Amy J.; Carlozzi, Noelle E.; Cai, Yi; Davis, Thomas K.; Fernández, Hilda; Fornoni, Alessia; Herreshoff, Emily; Mahan, John D.; Selewski, David T.; Sethna, Christine B.; Srivastava, Tarak; Tuttle, Katherine R.; Wang, Chia-shi; Gharavi, Ali G.; Greenbaum, Larry A.; Holzman, Lawrence B.; Kretzler, Matthias; Robinson, Bruce M.; Smoyer, William E.; Guay‐Woodford, Lisa M.; Reeve, Bryce B.; Gipson, Debbie S.; Ahn, Wooin; Appel, Gerald B.; Babayev, Revekka; Batal, Ibrahim; Bomback, Andrew S.; Brown, Eric J.; Campenot, Eric S.; Canetta, Pietro A.; Carlassara, Lucrezia; Chan, Brenda; Chatterjee, Debanjana; D’Agati, Vivette D.; Delbarba, Elisa; Dogra, Samriti; Foroncewicz, Bartosz; Ghiggeri, Gian Marco; Hines, William H.; Husain, Sufia; Jain, Namrata G.; Khairallah, Pascale; Kil, Byum Hee; Kiryluk, Krzysztof; Jeyabalan, Anushya; Lau, Wai Lam; Lin, Fangming; Lugani, Francesca; Marasà, Maddalena; Markowitz, Glen S.; Mohan, Sumit; Mu, Xueru; Mucha, Krzysztof; Nickolas, Thomas L.; Piva, Stacy; Radhakrishnan, Jai; Rao, Maya K.; Regunathan-Shenk, Renu; Sanna‐Cherchi, Simone; Santoriello, Dominick; Shirazian, Shayan; Stokes, Michael B.; Uy, Natalie; Valeri, Anthony M.; Al‐Uzri, Amira; Ambruzs, Josephine M.; Ashoor, Isa; Avilés, Diego; Baracco, Rossana; Barcia, John; Bartosh, Sharon M.; Belsha, Craig W.; Bowers, Corinna; Braun, Michael C.; Chernitskiy, Vladimir; Chishti, Aftab S.; Claes, Donna; Clark, Kira; Cramer, Carl H.; Davis, Keefe; Erkan, Elif; Feig, Daniel I.; Freundlich, Michael; Gaut, Joseph P.; Gbadegesin, Rasheed; Hanna, M. G.; Hidalgo, Guillermo; Hooper, David K.; Hunley, Tracy E.; Jain, Amrish; Kallash, Mahmoud; Kamel, Margo; Khalid, Myda; Klein, Jon B.; Kump, Theresa; Lane, Jerome C.; Liapis, Helen; Nester, Carla; Pan, Cynthia G.; Patterson, Larry T.; Patel, Hiren P.; Raad, Alice; Revell, Adelaide; Rheault, Michelle N.; Silva, Cynthia; Sreedharan, Rajasree; Steinke, Julia; Sumner, Susan; Twombley, Katherine; Wenderfer, Scott E.; Vasylyeva, Tetyana L.; Weaver, Donald J.; Wong, Craig S.; Yin, Hong; Achanti, Anand; Almaani, Salem; Ayoub, Isabelle; Budisavljevic, Milos N.; D’Angelo, Maggie; Fatima, Huma; Falk, Ronald J.; Fogo, Agnes B.; Gibson, Keisha; Glenn, Dorey; Hogan, Susan L.; Jennette, J. Charles; Julian, Bruce A.; Kidd, Jason; Laurin, Louis-Philippe; Massey, H. Davis; Mottl, Amy K.; Murphy, Shannon L.; Nachman, Patrick H.; Nádasdy, Tibor; Novák, Jan; Parikh, Samir M.; Poulton, Caroline J.; Powell, T. Brian; Renfrow, Matthew B.; Reynolds, Monica L.; Rizk, Dana V.; Rovin, Brad H.; Royal, Virginie; Sanghani, Neil; Self, Sally; Adler, Sharon G.; Alachkar, Nada; Alpers, Charles E.; Matar, Raed Bou; Ávila-Casado, Carmen; Bagnasco, Serena M.; Brede, Emily; Brown, Elizabeth J.; Cattran, Daniel C.; Choi, Michael; Dell, Katherine MacRae; DeWalt, Darren A.; Denburg, Michelle R.; Dukkipati, Ram; Fervenza, Fernando C.; Gadegbeku, Crystal A.; Gipson, Patrick E.; Gonzalez-Zea, Anny; Hasely, Leah; Hendren, Elizabeth; Hingorani, Sangeeta; Hladunewich, Michelle A.; Hogan, Jonathan J.; Hou, Jean; Jefferson, J. Ashley; Jhaveri, Kenar D.; Johnstone, Duncan B.; Kaskel, Frederick J.; Kogan, Amy; Kopp, Jeffrey B.; Lafayette, Richard A.; Lemley, Kevin V.; Malaga-Dieguez, Laura; Meyers, Kevin; Neu, Alicia M.; O’Shaughnessy, Michelle M.; O’Toole, John F.; Oliverio, Andrea L.; Palmer, Matthew; Parekh, Rulan S.; Pitter, Renée; Reich, Heather N.; Reidy, Kimberly; Rondon, Helbert; Sambandam, Kamalanathan K.; Sampson, Matthew G.; Sedor, John R.; Schelling, Jeffrey R.; Sperati, C. John; Swiatecka‐Urban, Agnieszka; Trachtman, Howard; Waldman, Meryl; Weisstuch, Joseph; Wiggins, Roger C.; Williams, D. Brandon; Winkler, Cheryl A.; Vento, Suzanne; Young, Eric W.; Zhdanova, Olga; Barisoni, Laura; Beil, Charlotte A.; Eikstadt, Richard; Gillespie, Brenda W.; Graff, John J.; Hewitt, Stephen M.; Hill-Callahan, Peg; Helmuth, Margaret E.; Lienczewski, Chrysta; Mansfield, Sarah; Mariani, Laura; McCullough, Keith; Moore, Nicholas; Nast, Cynthia C.; Sexton, Melissa; Troost, Jonathan P.; Wladkowski, Matthew; Zee, Jarcy; Zinsser, Dawn

doi:10.1016/j.kint.2018.12.018

Cited by 47 publications

(38 citation statements)

References 31 publications

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“…Patients with active glomerular disease have a poor health-related quality of life, and they often have anxiety and depression (24,(37)(38)(39)(40). Fatigue is a frequent, under-recognized, and highly disabling symptom in patients with vasculitis (10,41), but it is also of concern in those with kidney-limited glomerular disease or nephrotic conditions, and it is worst in those who are on dialysis (37,40,42). Swelling has previously been shown to have a strong negative association with healthrelated quality of life in predominantly proteinuric glomerular diseases (37).…”

Section: Discussionmentioning

confidence: 99%

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Carter

Gutman

Logeman

et al. 2020

CJASN

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Background and objectivesShared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices.Design, setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically.ResultsAcross 16 focus groups, 134 participants (range, 19–85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family.ConclusionsPatients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.

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Section: Discussionmentioning

confidence: 99%

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Carter

Gutman

Logeman

et al. 2020

CJASN

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“…The symptoms of nephrotic syndrome and the relapsing nature of most podocytopathies greatly compromise the quality of life of patients and their families. In general, patient-reported questionnaires identify oedema as the symptom that most negatively affects the quality of life 228 . Certain patients are at higher risk of developing drug-related adverse events linked to dose and length of exposure 229,230 .…”

Section: Quality Of Lifementioning

confidence: 99%

Podocytopathies

Kopp

Anders

Suszták

et al. 2020

Nat Rev Dis Primers

334

270

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Podocytopathies are kidney diseases in which direct or indirect podocyte injury drives proteinuria or nephrotic syndrome. In children and young adults, genetic variants in >50 podocyte-expressed genes, syndromal non-podocyte-specific genes and phenocopies with other underlying genetic abnormalities cause podocytopathies associated with steroid-resistant nephrotic syndrome or severe proteinuria. A variety of genetic variants likely contribute to disease development. Among genes with non-Mendelian inheritance, variants in APOL1 have the largest effect size. In addition to genetic variants, environmental triggers such as immune-related, infection-related, toxic and haemodynamic factors and obesity are also important causes of podocyte injury and frequently combine to cause various degrees of proteinuria in children and adults. Typical manifestations on kidney biopsy are minimal change lesions and focal segmental glomerulosclerosis lesions. Standard treatment for primary podocytopathies manifesting with focal segmental glomerulosclerosis lesions includes glucocorticoids and other immunosuppressive drugs; individuals not responding with a resolution of proteinuria have a poor renal prognosis. Renin-angiotensin system antagonists help to control proteinuria and slow the progression of fibrosis. Symptomatic management may include the use of diuretics, statins, infection prophylaxis and anticoagulation. This Primer discusses a shift in paradigm from patient stratification based on kidney biopsy findings towards personalized management based on clinical, morphological and genetic data as well as pathophysiological understanding.

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“…This is consistent with cross-sectional analyses suggesting edema as a strong predictor of HRQOL in this population. [16][17][18] Although not surprising given how profoundly edema can affect individuals with these diseases, these longitudinal results add to prior cross-sectional work by demonstrating that changes in edema for an individual patient over time are associated with change in HRQOL. Though proteinuria and serum albumin were associated with all HRQOL measures in unadjusted analyses, in the final multivariable model, proteinuria failed to be an independent predictor of HRQOL and albumin was significant in only 4 of 7 domains.…”

Section: Discussionmentioning

confidence: 53%

Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study

Murphy

Mahan

Troost

et al. 2020

Kidney International Reports

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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. Methods: 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. Results: 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. Conclusion: 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.

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Health-related quality of life in glomerular disease

Cited by 47 publications

References 31 publications

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Podocytopathies

Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study

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