Development of Focal Segmental Glomerulosclerosis Patient-Reported Outcome Measures: Symptom Diary and Symptom Impact Questionnaire

Mathias, Susan D.; Vallow, S.; Gipson, Debbie S.; Thorneloe, Kevin S.; Sprecher, Dennis L.

doi:10.1053/j.ajkd.2017.04.023

Cited by 12 publications

(36 citation statements)

References 13 publications

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“…The prospective Cure Glomerulonephropathy cohort plans to collect patient-reported data on both generic and disease-specific outcomes (50). Glomerular disease-specific measures for patients with systemic ANCA-associated vasculitis and the FSGS symptom diary/effect questionnaire are starting to be validated (11,51). However, the importance of these outcomes to patients and caregivers highlights the need to develop instruments that can be used in specific diseases but also across a range of glomerular diseases.…”

Section: Discussionmentioning

confidence: 99%

“…Moreover, there is uncertainty about what outcomes of the disease and its treatment are most important to patients. Patients with glomerular disease may experience kidney failure (1,2), bone disease (3), cancer (4)(5)(6), infertility (7,8), fatigue, swelling (9)(10)(11), impaired psychosocial wellbeing (9,11,12), and reduced life expectancy (13)(14)(15). In weighing treatment options, decision makers require comprehensive information about all relevant harms and benefits.…”

Section: Introductionmentioning

confidence: 99%

“…Instead, trials frequently report biochemical or clinical outcomes selected by researchers with little or no patient involvement (19)(20)(21). Scant attention has been paid to patient-reported outcomes that reflect how patients feel and function (22,23), even though symptoms, such as swelling, fatigue, and depression, are often identified by patients as major concerns (10,11,24,25). Life participation, defined as the ability to do meaningful activities in life, has been identified as an important outcome for people receiving peritoneal dialysis or living with a kidney transplant (26,27).…”

Section: Introductionmentioning

confidence: 99%

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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%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Carter

Gutman

Logeman

et al. 2020

CJASN

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“…21,22 The domains included in the CureGN PRO assessment were selected based on available data and knowledge of the diseases at the inception of this study, but no such data on patient experience in this population had been published. Research since that time has corroborated the importance of the domains included here, 23 but we suspect that not all the domains important to the experience of these diseases are captured by our assessment. Another limitation of this study is that some domains are composed of a single item (anxiety in children and adults, sleep impairments in adults) and thus provide less precision.…”

Section: Discussionmentioning

confidence: 94%

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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“…For in-person visits, a focused physical exam is performed and patient-reported outcome (PRO) measures are assessed (medication adherence, symptoms, and Patient-Reported Outcomes Measurement Information System [PROMIS] items). [8][9][10][11] A fresh, spot urine sample is collected and centrifuged at each visit, and the supernatant and pellet are stored. A 24-hour collection is requested annually for adults and continent children.…”

Section: Objectives and Study Desigmentioning

confidence: 99%

CureGN Study Rationale, Design, and Methods: Establishing a Large Prospective Observational Study of Glomerular Disease

Flessner

Nachman

Cattran

et al. 2019

American Journal of Kidney Diseases

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Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriate investigated and resolved. Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Development of Focal Segmental Glomerulosclerosis Patient-Reported Outcome Measures: Symptom Diary and Symptom Impact Questionnaire

Cited by 12 publications

References 13 publications

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

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

CureGN Study Rationale, Design, and Methods: Establishing a Large Prospective Observational Study of Glomerular Disease

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