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  1. Article ; Online: Optimizing Enrollment of Patients into Nephrology Research Studies.

    Selewski, David T / Herreshoff, Emily G / Gipson, Debbie S

    Clinical journal of the American Society of Nephrology : CJASN

    2015  Volume 11, Issue 3, Page(s) 512–517

    Abstract: Advances in medical care and biomedical research depend on the participation of human subjects. Poor patient enrollment in research has limited past clinical and translational research endeavors in nephrology. Simultaneously, patients and their ... ...

    Abstract Advances in medical care and biomedical research depend on the participation of human subjects. Poor patient enrollment in research has limited past clinical and translational research endeavors in nephrology. Simultaneously, patients and their caregivers are seeking better diagnostic, monitoring, and therapeutic approaches to improve or restore kidney and overall health. This manuscript will discuss a framework and strategies to optimize patient enrollment within nephrology research and provide examples of success from existing nephrology research programs.
    MeSH term(s) Attitude of Health Personnel ; Biomedical Research/methods ; Community-Institutional Relations ; Delivery of Health Care ; Health Knowledge, Attitudes, Practice ; Humans ; Nephrology/methods ; Patient Acceptance of Health Care ; Patient Selection ; Research Subjects/psychology ; Sample Size
    Language English
    Publishing date 2015-07-16
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2226665-3
    ISSN 1555-905X ; 1555-9041
    ISSN (online) 1555-905X
    ISSN 1555-9041
    DOI 10.2215/CJN.00500115
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Using PROMIS® to create clinically meaningful profiles of nephrotic syndrome patients.

    Troost, Jonathan P / Gipson, Debbie S / Carlozzi, Noelle E / Reeve, Bryce B / Nachman, Patrick H / Gbadegesin, Rasheed / Wang, Jichuan / Modersitzki, Frank / Massengill, Susan / Mahan, John D / Liu, Yang / Trachtman, Howard / Herreshoff, Emily G / DeWalt, Darren A / Selewski, David T

    Health psychology : official journal of the Division of Health Psychology, American Psychological Association

    2019  Volume 38, Issue 5, Page(s) 410–421

    Abstract: Objective: Nephrotic syndrome (NS) is a kidney disease known to adversely impact health-related quality of life (HRQOL). Patient-reported outcome (PRO) measures are commonly used to characterize HRQOL and the patient disease experience. This study aims ... ...

    Abstract Objective: Nephrotic syndrome (NS) is a kidney disease known to adversely impact health-related quality of life (HRQOL). Patient-reported outcome (PRO) measures are commonly used to characterize HRQOL and the patient disease experience. This study aims to improve the interpretability and clinical utility of the Patient-Reported Outcomes Measurement Information System® (PROMIS®) by identifying distinct meaningful HRQOL profiles in children and adults with NS.
    Method: Patients were from 2 prospective NS cohort studies (PROMIS-II®: 121 children; NEPTUNE: 40 children and 219 adults) with data from 6 PROMIS® domains. Latent Profile Analysis was used to identify subgroups of patients based on PROMIS® score patterns. A 3-step analysis of latent profile predictors was used to determine how clinical parameters predicted HRQOL profile membership.
    Results: We identified 3 HRQOL profiles (Good, Average, and Poor) with strong indicators of membership classification (entropy >0.86). Complete proteinuria remission, reduction in symptoms, and shorter disease duration, were significant predictors of better HRQOL profile membership.
    Conclusions: Patients with NS can be classified by HRQOL into clinically meaningful categories. Integrating this approach into clinic may help in the identification of individuals with poor HRQOL will help clinicians better manage their symptoms and researchers study the causes and possible interventions for these patients. PROMIS® HRQOL profiles were reproducible in replication cohorts. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
    MeSH term(s) Adolescent ; Adult ; Child ; Cohort Studies ; Female ; Humans ; Longitudinal Studies ; Male ; Nephrotic Syndrome/epidemiology ; Nephrotic Syndrome/pathology ; Patient Reported Outcome Measures ; Quality of Life/psychology ; Young Adult
    Language English
    Publishing date 2019-05-02
    Publishing country United States
    Document type Journal Article
    ZDB-ID 226369-5
    ISSN 1930-7810 ; 0278-6133
    ISSN (online) 1930-7810
    ISSN 0278-6133
    DOI 10.1037/hea0000679
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Inpatient health care utilization in the United States among children, adolescents, and young adults with nephrotic syndrome.

    Gipson, Debbie S / Messer, Kassandra L / Tran, Cheryl L / Herreshoff, Emily G / Samuel, Joyce P / Massengill, Susan F / Song, Peter / Selewski, David T

    American journal of kidney diseases : the official journal of the National Kidney Foundation

    2013  Volume 61, Issue 6, Page(s) 910–917

    Abstract: Background: Data describing inpatient health care utilization in children with nephrotic syndrome and related severe complications are limited. Our goals were to describe the charges, length of stay (LOS), and number of hospitalizations among children, ... ...

    Abstract Background: Data describing inpatient health care utilization in children with nephrotic syndrome and related severe complications are limited. Our goals were to describe the charges, length of stay (LOS), and number of hospitalizations among children, adolescents, and young adults with nephrotic syndrome.
    Study design: A cross-sectional analysis of the Kids' Inpatient Database (KID) database from the Healthcare Cost and Utilization Project (HCUP). The HCUP-KID is an all-payer database of hospital discharges for children, adolescents, and young adults in the United States compiled every 3 years by the Agency for Healthcare Research and Quality.
    Setting & participants: HCUP-KID data were obtained for the 2006 and 2009 cohort years. We identified patients by searching discharges for nephrotic syndrome International Classification of Diseases, Ninth Revision, Clinical Modification diagnosis codes.
    Predictor: Patient demographics, disease complications in children, adolescents, and young adults hospitalized with nephrotic syndrome.
    Outcome: Number of hospitalizations, mean charges, and LOS for children, adolescents, and young adults hospitalized with nephrotic syndrome.
    Results: There were 6,308 hospitalization discharges in children, adolescents, and young adults with a primary or secondary diagnosis of nephrotic syndrome reported by 38 and 44 states in 2006 and 2009, respectively, representing an estimated 9,934 discharges nationally. Nephrotic syndrome resulted in an estimated 48,700 inpatient days and charges totaling $259 million. The mean charge per hospitalization was ∼$26,500 (SE, $1,100) and LOS was 5 days (SE, 0.1). 16% of discharges for nephrotic syndrome had a diagnosis code for at least one severe complication, including thromboembolism (3.6%), septicemia (3.8%), peritonitis (2.6%), pneumonia (5.4%), or diabetes (2.4%). Multivariable analysis showed age 15 years or older, race, higher socioeconomic status, acute renal failure, thromboembolic disease, hypertension, and infections predicted higher mean hospitalization charges.
    Limitations: The HCUP-KID database collects data on a hospitalization level. Consequently, health care utilization on an individual patient level or in the outpatient environment is not possible.
    Conclusions: We present a comprehensive description of inpatient health care utilization in children, adolescents, and young adults with nephrotic syndrome. The complications of nephrotic syndrome, including thromboembolism, infection, and hypertension, contribute significantly to these charges.
    MeSH term(s) Adolescent ; Child ; Child, Preschool ; Cohort Studies ; Cross-Sectional Studies ; Databases, Factual ; Female ; Health Services/economics ; Health Services/utilization ; Hospital Charges/statistics & numerical data ; Hospitalization/economics ; Hospitalization/statistics & numerical data ; Humans ; Infant ; Length of Stay/economics ; Length of Stay/statistics & numerical data ; Male ; Nephrotic Syndrome ; United States ; Young Adult
    Language English
    Publishing date 2013-06
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 604539-x
    ISSN 1523-6838 ; 0272-6386
    ISSN (online) 1523-6838
    ISSN 0272-6386
    DOI 10.1053/j.ajkd.2012.12.025
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article: 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 / Modersitzki, Frank / Trachtman, Howard / Nachman, Patrick H / Reidy, Kimberly J / Selewski, David T / Herreshoff, Emily G / Srivastava, Tarak / Gibson, Keisha L / Derebail, Vimal K / Lin, Jen Jar / Hingorani, Sangeeta / Fornoni, Alessia / Fervenza, Fernando C / Sambandam, Kamalanathan / Athavale, Ambarish M /
    Kopp, Jeffrey B / Reich, Heather N / Adler, Sharon G / Greenbaum, Larry A / Dell, Katherine M / Appel, Gerald / Wang, Chia-Shi / Sedor, John / Kaskel, Frederick J / Lafayette, Richard A / Atkinson, Meredith A / Lieske, John C / Sethna, Christine B / Kretzler, Matthias / Hladunewich, Michelle A / Lemley, Kevin V / Brown, Elizabeth / Meyers, Kevin E / Gadegbeku, Crystal A / Holzman, Lawrence B / Jefferson, Jonathan Ashley / Tuttle, Katherine R / Singer, Pamela / Hogan, Marie C / Cattran, Daniel C / Barisoni, Laura / Gipson, Debbie S

    Clinical kidney journal

    2019  Volume 13, Issue 4, Page(s) 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 ... ...

    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 
    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.
    Language English
    Publishing date 2019-08-05
    Publishing country England
    Document type Journal Article
    ZDB-ID 2655800-2
    ISSN 2048-8513 ; 2048-8505
    ISSN (online) 2048-8513
    ISSN 2048-8505
    DOI 10.1093/ckj/sfz092
    Database MEDical Literature Analysis and Retrieval System OnLINE

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