Citations 3
Comparing Kidney Health Outcomes in Children, Adolescents, and Adults With Focal Segmental Glomerulosclerosis
Spino, Cathie , Attalla, Samara, Tarnoff, Joshua, Massengill, Susan F. , Lafayette, Richard , Vega-Warner, Virginia , Adler, Sharon G. , Gipson, Patrick E., Elliott, Matthew , Kaskel, Frederick J. , Fermin, Damian , Fine, Richard Ν., Brown, Elizabeth , Reidy, Kimberly J. , Tuttle, Katherine R. , Gibson, Keisha L. , Lemley, Kevin V. , Atkinson, Meredith A. , Hingorani, Sangeeta , Srivastava, Tarak, Sethna, Christine B. , Meyers, Kevin , Tran, Cheryl L. , Dell, Katherine M., Wang, Chia-shi , Yee, Jennifer Lai , Lin, J.J. , Rheault, Michelle N. , Tran, Cheryl, Wang, Chia-Shi , Tuttle, Katherine R , Gipson, Debbie S , Troost, Jonathan P. , Moxey‐Mims, Marva , Greenbaum, Larry A. , Sampson, Matthew Gordon , Gbadegesin, Rasheed , Brady, Tammy McLoughlin , Trachtman, Howard
JAMA Network Open | August 26, 2022 | Volume: 5 | Issue: 8 | Pages: e2228701
Risk Behaviors in Teens with Chronic Kidney Disease: A Study from the Midwest Pediatric Nephrology Consortium
Xiao, Nianzhou , Stolfi, Adrienne , Malatesta-Muncher, Rossana , Bholah, Reshma , Kogon, Amy J. , Eddington, Angelica R., Chand, Deepa H. , Greenbaum, Larry A. , Tran, Cheryl L. , Chishti, Aftab S. , Davis, Keefe, Matloff, Robyn , Woroniecki, Robert P. , Klosterman, Colleen, Luckritz, Kera E., Omoloja, Abiodun , Tran, Cheryl L , Chishti, Aftab , Omoloja, Abiodun , Hanevold, Coral Dawn
International Journal of Nephrology | December 4, 2019 | Volume: 2019 | Issue: No issue available | Pages: 1-10
Introduction . There is a paucity of information about risk behaviors in adolescents with chronic kidney disease (CKD). We designed this study to assess the prevalence of risk behaviors among teens with CKD in the United States and to investigate any associations between risk behavior and patient or disease characteristics. Methods . After informed consent, adolescents with CKD completed an anonymous, confidential, electronic web-based questionnaire to measure risk behaviors within five domains: sex, teen driving, alcohol and tobacco consumption, illicit drug use, and depression-related risk behavior. The reference group was composed of age-, gender-, and race-matched US high school students. Results . When compared with controls, teens with CKD showed significantly lower prevalence of risk behaviors, except for similar use of alcohol or illicit substances during sex (22.5% vs. 20.8%, p = 0.71 ), feeling depressed for ≥2 weeks (24.3% vs. 29.1%, p = 0.07 ), and suicide attempt resulting in injury needing medical attention (36.4% vs. 32.5%, p = 0.78 ). Furthermore, the CKD group had low risk perception of cigarettes (28%), alcohol (34%), marijuana (50%), and illicit prescription drug (28%). Use of two or more substances was significantly associated with depression and suicidal attempts ( p < 0.05 ) among teens with CKD. Conclusions . Teens with CKD showed significantly lower prevalence of risk behaviors than controls. Certain patient characteristics were associated with increased risk behaviors among the CKD group. These data are somewhat reassuring, but children with CKD still need routine assessment of and counselling about risk behaviors.
The longitudinal relationship between patient-reported outcomes and clinical characteristics among patients with focal segmental glomerulosclerosis in the Nephrotic Syndrome Study Network
Troost, Jonathan P. , Waldo, Anne, Carlozzi, Noelle E. , Murphy, Shannon L., Modersitzki, Frank , Trachtman, Howard , Nachman, Patrick H. , Reidy, Kimberly J. , Selewski, David T. , Herreshoff, Emily, Srivastava, Tarak, Gibson, Keisha L. , Derebail, Vimal K. , Lin, Jen Jar, Hingorani, Sangeeta, Sambandam, Kamalanathan K. , Athavale, Ambarish M., Reich, Heather N. , Adler, Sharon G. , Dell, Katherine M., Appel, Gerald B., Wang, Chia-shi , Kaskel, Frederick J. , Lafayette, Richard , Atkinson, Meredith A. , Kretzler, Matthias , Lemley, Kevin V. , Brown, Elizabeth , Meyers, Kevin , Gadegbeku, Crystal A., Holzman, Lawrence B. , Jefferson, Jonathan Ashley, Tuttle, Katherine R, Singer, Pamela, Hogan, Marie C. , Cattran, Daniel C., Network, the Nephrotic Syndrome Study, Dell, K, Schachere, M., Lemley, K, Whitted, L, Haney, Connie J, Gurusinghe, Sayuri , Toledo, Michelly Louise Sartório Altoé, Greenbaum, L, Wang, C, Lee, B, Nast, Cynthia C. , Page, J La, Stroger, John H, Itteera, M. , Neu, Alicia M. , Boynton, Sara Ashley, Chernitskiy, Vladimir, Reidy, K, Kopp, J, Castro-Rubio, E, Brede, E, Blake, J. Thomas, Modersitzki, F, Lafayette, R, Mehta, K. , Johnstone, Duncan B., Pfeffer, Zoe, Cattran, D, Hladunewich, M, Reich, H, Ling, P., Romano, M, Barisoni, L, Bidot, Carlos, Kretzler, M, Williams, A, Pitter, R, Gibson, K, Grubbs, S, Froment, Anne, Holzman, L, Kallem, K., Cerecino, F J, Johnson, N, Jefferson, A, Tuttle, Katherine R. , Klepach, K, Kelton, M, Cooper, Ann , Lin, J J, Spainhour, Mitzie, Gray, S, Barisoni, L, Gillespie, B, Gipson, D, Holzman, L, Mariani, Laura , Song, Peter X.‐K. , Kincaid, Colleen, Lienczewski, Chrysta, Mainieri, T, Williams, Anna , Ávila-Casado, Carmen , Bagnasco, Serena M. , Gaut, Joseph P. , Hewitt, Stephen M. , Palmer, M, Rosenberg, A, Royal, Virginie , Barisoni, L, Nast, C, Roy, Cindy N., Urv, T, Dell, K, Greenbaum, L, Lee, B, Page, J La, Stroger, John H, Reidy, K, Kopp, J, Brede, E, Modersitzki, F, Lafayette, R, Gadegbeku, C, Cattran, D, Hladunewich, M, Reich, H, Romano, M, Pitter, R, Gibson, K, Cerecino, F J, Jefferson, A, Lin, J J, Gray, S, Kretzler, M, Gillespie, B, Gipson, D, Mariani, L, Mainieri, T, Williams, A, Mariani, L, Palmer, M, Rosenberg, A, Barisoni, L, Urv, T, Wang, Chia-Shi , Tuttle, Katherine R , Hogan, Marie C , Fornoni, Alessia , Fervenza, Fernando C. , Kopp, Jeffrey B. , Greenbaum, Larry A. , Sedor, John R. , Lieske, John C. , Srivastava, Tarak , Hladunewich, Michelle , Tuttle, Katherine R, Singer, Pamela S. , Barisoni, Laura , Gipson, Debbie S , Network, the Nephrotic Syndrome Study, Dell, K, Lemley, K, Greenbaum, L, Lee, B, Page, J La, Stroger, John H, Reidy, K, Kopp, J, Brede, E, Zhdanova, Olga A. , Modersitzki, F, Vento, Sandro , Lafayette, R, Cattran, D, Hladunewich, M, Reich, H, Romano, M, Barisoni, L, Bidot, C, Kretzler, M, Williams, A, Pitter, R, Gibson, K, Holzman, L, Cerecino, F J, Jefferson, A, Freedman, Barry I. , Lin, J J, Gray, S, Barisoni, L, Gillespie, B, Gipson, D, Holzman, L, Sampson, Matthew Gordon , Zee, Jarcy , Mainieri, T, Hodgin, Jeffrey B. , Palmer, M, Rosenberg, A, Thomas, D, Barisoni, L, Nast, C, Abbott, Kevin C. , Roy, C, Urv, T, Brooks, Philip John , Dell, K, Greenbaum, L, Lee, B, Page, J La, Stroger, John H, Reidy, K, Kopp, J, Brede, E, Modersitzki, F, Lafayette, R, Gadegbeku, C, Cattran, D, Hladunewich, M, Reich, H, Romano, M, Bidot, C, Pitter, R, Gibson, K, Cerecino, F J, Jefferson, A, Lin, J J, Gray, S, Kretzler, M, Gillespie, B, Gipson, D, Mariani, L, Mainieri, T, Williams, A, Mariani, L, Palmer, M, Rosenberg, A, Thomas, D, Barisoni, L, Roy, C, Urv, T, Troost, Jonathan P.
Clinical Kidney Journal | July 3, 2019 | Volume: 13 | Issue: 4 | Pages: 597-606
Abstract Background Understanding the relationship between clinical and patient-reported outcomes (PROs) will help support clinical care and future clinical trial design of novel therapies for focal segmental glomerulosclerosis (FSGS). Methods FSGS patients ≥8 years of age enrolled in the Nephrotic Syndrome Study Network completed Patient-Reported Outcomes Measurement Information System PRO measures of health-related quality of life (HRQoL) (children: global health, mobility, fatigue, pain interference, depression, anxiety, stress and peer relationships; adults: physical functioning, fatigue, pain interference, sleep impairment, mental health, depression, anxiety and social satisfaction) at baseline and during longitudinal follow-up for a maximum of 5 years. Linear mixed-effects models were used to determine which demographic, clinical and laboratory features were associated with PROs for each of the eight children and eight adults studied. Results There were 45 children and 114 adult FSGS patients enrolled that had at least one PRO assessment and 519 patient visits. Multivariable analyses among children found that edema was associated with global health (−7.6 points, P = 0.02) and mobility (−4.2, P = 0.02), the number of reported symptoms was associated with worse depression (−2.7 per symptom, P = 0.009) and anxiety (−2.3, P = 0.02) and the number of emergency room (ER) visits in the prior 6 months was associated with worse mobility (−2.8 per visit, P < 0.001) and fatigue (−2.4, P = 0.03). Multivariable analyses among adults found the number of reported symptoms was associated with worse function in all eight PROMIS measures and the number of ER visits was associated with worse fatigue, pain interference, sleep impairment, depression, anxiety and social satisfaction. Laboratory markers of disease severity (i.e. proteinuria, estimated glomerular filtration rate and serum albumin) did not predict PRO in multivariable analyses, with the single exception of complete remission and better pain interference scores among children (+9.3, P = 0.03). Conclusions PROs provide important information about HRQoL for persons with FSGS that is not captured solely by the examination of laboratory-based markers of disease. However, it is critical that instruments capture the patient experience and FSGS clinical trials may benefit from a disease-specific instrument more sensitive to within-patient changes.