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Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study
BACKGROUND: Autosomal dominant polycystic kidney disease (ADPKD) is a rare inherited kidney disorder with considerable symptom burden and negative effects even in early-stage disease. Patients’ reporting of ADPKD symptom burden may differ from physicians’ impressions. In this quantitative, cross-sec...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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Dove
2021
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Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8053527/ https://www.ncbi.nlm.nih.gov/pubmed/33880055 http://dx.doi.org/10.2147/IJNRD.S297491 |
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author | Sanon Aigbogun, Myrlene Oberdhan, Dorothee Doane, Michael J Rooney, Jillian Inyart, Brian C Pao, Christina S Denny, Alexis H |
author_facet | Sanon Aigbogun, Myrlene Oberdhan, Dorothee Doane, Michael J Rooney, Jillian Inyart, Brian C Pao, Christina S Denny, Alexis H |
author_sort | Sanon Aigbogun, Myrlene |
collection | PubMed |
description | BACKGROUND: Autosomal dominant polycystic kidney disease (ADPKD) is a rare inherited kidney disorder with considerable symptom burden and negative effects even in early-stage disease. Patients’ reporting of ADPKD symptom burden may differ from physicians’ impressions. In this quantitative, cross-section survey study, we evaluated patient and physician assessments of symptom burden at early- and late-stage ADPKD. METHODS: In the United States, 300 patients with ADPKD and 155 physicians treating patients with ADPKD completed online surveys administered by Kantar. Disease stage was categorized as early (chronic kidney disease [CKD] stages 1–3) or late (stages 4–5). Patients completed the Work Productivity and Activity Impairment Questionnaire and reported current disease symptoms. Patients and physicians assessed impacts of ADPKD on daily life and burden of specific symptoms. Statistical analyses compared patient versus physician responses stratified by early- versus late-stage ADPKD. RESULTS: We found that impairment in work productivity was statistically greater in late- versus early-stage CKD. Compared with physicians’ impressions, patients were more likely at early stages and less likely at later stages to report a moderate/strong impact of ADPKD on daily life. Among patients, 74% with early- and 88% with late-stage disease reported that ADPKD caused them to modify their daily lives. In early-stage disease, patients reported a statistically greater burden from feeling exhausted and less burden from dull kidney pain, cardiovascular problems, high blood pressure, and liver cysts than physicians assumed. At later stages, patients reported feeling exhausted and skeletal/joint pain as more burdensome, and frequent urination, high blood pressure, liver cysts, and hematuria as less burdensome, compared with physicians’ impressions. CONCLUSION: The results of this survey study demonstrate a disconnect between patients’ experiences and physicians’ awareness of the burden of ADPKD and highlight the need for more patient/physician discussion of symptoms and disease management. |
format | Online Article Text |
id | pubmed-8053527 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Dove |
record_format | MEDLINE/PubMed |
spelling | pubmed-80535272021-04-19 Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study Sanon Aigbogun, Myrlene Oberdhan, Dorothee Doane, Michael J Rooney, Jillian Inyart, Brian C Pao, Christina S Denny, Alexis H Int J Nephrol Renovasc Dis Original Research BACKGROUND: Autosomal dominant polycystic kidney disease (ADPKD) is a rare inherited kidney disorder with considerable symptom burden and negative effects even in early-stage disease. Patients’ reporting of ADPKD symptom burden may differ from physicians’ impressions. In this quantitative, cross-section survey study, we evaluated patient and physician assessments of symptom burden at early- and late-stage ADPKD. METHODS: In the United States, 300 patients with ADPKD and 155 physicians treating patients with ADPKD completed online surveys administered by Kantar. Disease stage was categorized as early (chronic kidney disease [CKD] stages 1–3) or late (stages 4–5). Patients completed the Work Productivity and Activity Impairment Questionnaire and reported current disease symptoms. Patients and physicians assessed impacts of ADPKD on daily life and burden of specific symptoms. Statistical analyses compared patient versus physician responses stratified by early- versus late-stage ADPKD. RESULTS: We found that impairment in work productivity was statistically greater in late- versus early-stage CKD. Compared with physicians’ impressions, patients were more likely at early stages and less likely at later stages to report a moderate/strong impact of ADPKD on daily life. Among patients, 74% with early- and 88% with late-stage disease reported that ADPKD caused them to modify their daily lives. In early-stage disease, patients reported a statistically greater burden from feeling exhausted and less burden from dull kidney pain, cardiovascular problems, high blood pressure, and liver cysts than physicians assumed. At later stages, patients reported feeling exhausted and skeletal/joint pain as more burdensome, and frequent urination, high blood pressure, liver cysts, and hematuria as less burdensome, compared with physicians’ impressions. CONCLUSION: The results of this survey study demonstrate a disconnect between patients’ experiences and physicians’ awareness of the burden of ADPKD and highlight the need for more patient/physician discussion of symptoms and disease management. Dove 2021-04-13 /pmc/articles/PMC8053527/ /pubmed/33880055 http://dx.doi.org/10.2147/IJNRD.S297491 Text en © 2021 Sanon Aigbogun et al. https://creativecommons.org/licenses/by-nc/3.0/This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/ (https://creativecommons.org/licenses/by-nc/3.0/) ). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php). |
spellingShingle | Original Research Sanon Aigbogun, Myrlene Oberdhan, Dorothee Doane, Michael J Rooney, Jillian Inyart, Brian C Pao, Christina S Denny, Alexis H Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study |
title | Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study |
title_full | Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study |
title_fullStr | Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study |
title_full_unstemmed | Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study |
title_short | Disconnect in Assessments of Autosomal Dominant Polycystic Kidney Disease Burden Between Patients and Physicians: A Survey Study |
title_sort | disconnect in assessments of autosomal dominant polycystic kidney disease burden between patients and physicians: a survey study |
topic | Original Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8053527/ https://www.ncbi.nlm.nih.gov/pubmed/33880055 http://dx.doi.org/10.2147/IJNRD.S297491 |
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