Symptoms and impacts in anemia of chronic kidney disease

Background Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients’ health-related quality of life. Methods We conducted qualitative concept elicitation (CE) and cognitive debriefing (CD) interviews to assess the frequency, duration, and severity of symptom...

Full description

Saved in:
Bibliographic Details
Published in:Journal of patient-reported outcomes 2020-07, Vol.4 (1), p.64-10, Article 64
Main Authors: Mathias, Susan D., Blum, Steven I., Sikirica, Vanja, Johansen, Kirsten L., Colwell, Hilary H., Okoro, Tony
Format: Article
Language:English
Subjects:
Anemia
Chronic kidney disease
Cognitive debriefing
Concept elicitation
Interviews
Kidney diseases
Medicine
Medicine & Public Health
Patient-reported outcomes
Quality of Life Research
Semi-structured interview
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
cited_by cdi_FETCH-LOGICAL-c607t-d4ef8ba47a123a6f662b7aae2353b9dd085843dceb7530ba290258ab256cc2533
cites cdi_FETCH-LOGICAL-c607t-d4ef8ba47a123a6f662b7aae2353b9dd085843dceb7530ba290258ab256cc2533
container_end_page 10
container_issue 1
container_start_page 64
container_title Journal of patient-reported outcomes
container_volume 4
creator Mathias, Susan D.
Blum, Steven I.
Sikirica, Vanja
Johansen, Kirsten L.
Colwell, Hilary H.
Okoro, Tony
description Background Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients’ health-related quality of life. Methods We conducted qualitative concept elicitation (CE) and cognitive debriefing (CD) interviews to assess the frequency, duration, and severity of symptoms and impacts associated with anemia of CKD and to facilitate the development of a new patient-reported outcome (PRO) measure. We interviewed 36 patients with CKD and hemoglobin levels ≥8.0 to
doi_str_mv 10.1186/s41687-020-00215-8
format article
fullrecord <record><control><sourceid>proquest_doaj_</sourceid><recordid>TN_cdi_doaj_primary_oai_doaj_org_article_69988b7109314a80b3ca4f61a7c7433f</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><doaj_id>oai_doaj_org_article_69988b7109314a80b3ca4f61a7c7433f</doaj_id><sourcerecordid>2429060033</sourcerecordid><originalsourceid>FETCH-LOGICAL-c607t-d4ef8ba47a123a6f662b7aae2353b9dd085843dceb7530ba290258ab256cc2533</originalsourceid><addsrcrecordid>eNp9kUtv1DAUhS0EolXpH2CBIrFhE7h-2xskVPGoVIkFsLZuHGfqIYkHO1Np_j2eppSWBSvb9x5_99iHkJcU3lJq1LsiqDK6BQYtAKOyNU_IKZNgW1NrTx_sT8h5KVsAoNZaaflzcsKZZkZre0rMt8O0W9JUGpz7Jk479Etp4lyPYYrYpKHx1znN0Tc_Yz-HQ9PHErCEF-TZgGMJ53frGfnx6eP3iy_t1dfPlxcfrlqvQC9tL8JgOhQaKeOoBqVYpxED45J3tu_BSCN470OnJYcOmQUmDXZMKu-Z5PyMXK7cPuHW7XKcMB9cwuhuCylvHOYl-jE4Za0xnaZgORVooOMexaAoaq8F50NlvV9Zu303hTp0XjKOj6CPO3O8dpt04zS3VEhTAW_uADn92oeyuCkWH8ax_lbaF8dE9a8A-NH363-k27TPc_2qo8owQxmzVcVWlc-plByGezMU3DFnt-bsao7uNmd3dPHq4TPur_xJtQr4Kii1NW9C_jv7P9jf6bSxbA</addsrcrecordid><sourcetype>Open Website</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2428281229</pqid></control><display><type>article</type><title>Symptoms and impacts in anemia of chronic kidney disease</title><source>Open Access: PubMed Central</source><source>Publicly Available Content Database</source><source>Springer Nature - SpringerLink Journals - Fully Open Access </source><creator>Mathias, Susan D. ; Blum, Steven I. ; Sikirica, Vanja ; Johansen, Kirsten L. ; Colwell, Hilary H. ; Okoro, Tony</creator><creatorcontrib>Mathias, Susan D. ; Blum, Steven I. ; Sikirica, Vanja ; Johansen, Kirsten L. ; Colwell, Hilary H. ; Okoro, Tony</creatorcontrib><description>Background Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients’ health-related quality of life. Methods We conducted qualitative concept elicitation (CE) and cognitive debriefing (CD) interviews to assess the frequency, duration, and severity of symptoms and impacts associated with anemia of CKD and to facilitate the development of a new patient-reported outcome (PRO) measure. We interviewed 36 patients with CKD and hemoglobin levels ≥8.0 to &lt;12.0 g/dL using a semi-structured interview guide developed specifically for this study until saturation was reached. We used MAXQDA to perform qualitative analysis of interview transcripts to determine the most relevant symptoms and impacts (based on the frequency of concept mentions) experienced by participants. Results Most participants had stage 4/5 CKD (81%) and were being treated with an erythropoietin stimulating agent (69%). Spontaneously reported symptoms included feeling tired (79%), shortness of breath (39%), and weak/lacking strength (36%). We developed the Chronic Kidney Disease and Anemia Questionnaire (CKD-AQ), which includes 23 items assessing frequency and severity of the most relevant symptoms and impacts identified by patients with anemia of CKD. The CD interviews confirmed the clarity and relevance of the concepts identified in the CE phase. Conclusion The CKD-AQ is a novel PRO measure that captures the frequency and severity of the most relevant symptoms and impacts associated with anemia of CKD. Future studies will evaluate its psychometric properties and its potential utility in anemia management.</description><identifier>ISSN: 2509-8020</identifier><identifier>EISSN: 2509-8020</identifier><identifier>DOI: 10.1186/s41687-020-00215-8</identifier><identifier>PMID: 32728779</identifier><language>eng</language><publisher>Cham: Springer International Publishing</publisher><subject>Anemia ; Chronic kidney disease ; Cognitive debriefing ; Concept elicitation ; Interviews ; Kidney diseases ; Medicine ; Medicine &amp; Public Health ; Patient-reported outcomes ; Quality of Life Research ; Semi-structured interview</subject><ispartof>Journal of patient-reported outcomes, 2020-07, Vol.4 (1), p.64-10, Article 64</ispartof><rights>The Author(s) 2020</rights><rights>The Author(s) 2020. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c607t-d4ef8ba47a123a6f662b7aae2353b9dd085843dceb7530ba290258ab256cc2533</citedby><cites>FETCH-LOGICAL-c607t-d4ef8ba47a123a6f662b7aae2353b9dd085843dceb7530ba290258ab256cc2533</cites><orcidid>0000-0002-7158-730X</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC7391458/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/2428281229?pq-origsite=primo$$EHTML$$P50$$Gproquest$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,885,25753,27924,27925,37012,37013,44590,53791,53793</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32728779$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Mathias, Susan D.</creatorcontrib><creatorcontrib>Blum, Steven I.</creatorcontrib><creatorcontrib>Sikirica, Vanja</creatorcontrib><creatorcontrib>Johansen, Kirsten L.</creatorcontrib><creatorcontrib>Colwell, Hilary H.</creatorcontrib><creatorcontrib>Okoro, Tony</creatorcontrib><title>Symptoms and impacts in anemia of chronic kidney disease</title><title>Journal of patient-reported outcomes</title><addtitle>J Patient Rep Outcomes</addtitle><addtitle>J Patient Rep Outcomes</addtitle><description>Background Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients’ health-related quality of life. Methods We conducted qualitative concept elicitation (CE) and cognitive debriefing (CD) interviews to assess the frequency, duration, and severity of symptoms and impacts associated with anemia of CKD and to facilitate the development of a new patient-reported outcome (PRO) measure. We interviewed 36 patients with CKD and hemoglobin levels ≥8.0 to &lt;12.0 g/dL using a semi-structured interview guide developed specifically for this study until saturation was reached. We used MAXQDA to perform qualitative analysis of interview transcripts to determine the most relevant symptoms and impacts (based on the frequency of concept mentions) experienced by participants. Results Most participants had stage 4/5 CKD (81%) and were being treated with an erythropoietin stimulating agent (69%). Spontaneously reported symptoms included feeling tired (79%), shortness of breath (39%), and weak/lacking strength (36%). We developed the Chronic Kidney Disease and Anemia Questionnaire (CKD-AQ), which includes 23 items assessing frequency and severity of the most relevant symptoms and impacts identified by patients with anemia of CKD. The CD interviews confirmed the clarity and relevance of the concepts identified in the CE phase. Conclusion The CKD-AQ is a novel PRO measure that captures the frequency and severity of the most relevant symptoms and impacts associated with anemia of CKD. Future studies will evaluate its psychometric properties and its potential utility in anemia management.</description><subject>Anemia</subject><subject>Chronic kidney disease</subject><subject>Cognitive debriefing</subject><subject>Concept elicitation</subject><subject>Interviews</subject><subject>Kidney diseases</subject><subject>Medicine</subject><subject>Medicine &amp; Public Health</subject><subject>Patient-reported outcomes</subject><subject>Quality of Life Research</subject><subject>Semi-structured interview</subject><issn>2509-8020</issn><issn>2509-8020</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>PIMPY</sourceid><sourceid>DOA</sourceid><recordid>eNp9kUtv1DAUhS0EolXpH2CBIrFhE7h-2xskVPGoVIkFsLZuHGfqIYkHO1Np_j2eppSWBSvb9x5_99iHkJcU3lJq1LsiqDK6BQYtAKOyNU_IKZNgW1NrTx_sT8h5KVsAoNZaaflzcsKZZkZre0rMt8O0W9JUGpz7Jk479Etp4lyPYYrYpKHx1znN0Tc_Yz-HQ9PHErCEF-TZgGMJ53frGfnx6eP3iy_t1dfPlxcfrlqvQC9tL8JgOhQaKeOoBqVYpxED45J3tu_BSCN470OnJYcOmQUmDXZMKu-Z5PyMXK7cPuHW7XKcMB9cwuhuCylvHOYl-jE4Za0xnaZgORVooOMexaAoaq8F50NlvV9Zu303hTp0XjKOj6CPO3O8dpt04zS3VEhTAW_uADn92oeyuCkWH8ax_lbaF8dE9a8A-NH363-k27TPc_2qo8owQxmzVcVWlc-plByGezMU3DFnt-bsao7uNmd3dPHq4TPur_xJtQr4Kii1NW9C_jv7P9jf6bSxbA</recordid><startdate>20200729</startdate><enddate>20200729</enddate><creator>Mathias, Susan D.</creator><creator>Blum, Steven I.</creator><creator>Sikirica, Vanja</creator><creator>Johansen, Kirsten L.</creator><creator>Colwell, Hilary H.</creator><creator>Okoro, Tony</creator><general>Springer International Publishing</general><general>Springer Nature B.V</general><general>SpringerOpen</general><scope>C6C</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7RV</scope><scope>7XB</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>KB0</scope><scope>NAPCQ</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope><scope>DOA</scope><orcidid>https://orcid.org/0000-0002-7158-730X</orcidid></search><sort><creationdate>20200729</creationdate><title>Symptoms and impacts in anemia of chronic kidney disease</title><author>Mathias, Susan D. ; Blum, Steven I. ; Sikirica, Vanja ; Johansen, Kirsten L. ; Colwell, Hilary H. ; Okoro, Tony</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c607t-d4ef8ba47a123a6f662b7aae2353b9dd085843dceb7530ba290258ab256cc2533</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Anemia</topic><topic>Chronic kidney disease</topic><topic>Cognitive debriefing</topic><topic>Concept elicitation</topic><topic>Interviews</topic><topic>Kidney diseases</topic><topic>Medicine</topic><topic>Medicine &amp; Public Health</topic><topic>Patient-reported outcomes</topic><topic>Quality of Life Research</topic><topic>Semi-structured interview</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Mathias, Susan D.</creatorcontrib><creatorcontrib>Blum, Steven I.</creatorcontrib><creatorcontrib>Sikirica, Vanja</creatorcontrib><creatorcontrib>Johansen, Kirsten L.</creatorcontrib><creatorcontrib>Colwell, Hilary H.</creatorcontrib><creatorcontrib>Okoro, Tony</creatorcontrib><collection>Springer Nature OA Free Journals</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing &amp; Allied Health Database</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni)</collection><collection>ProQuest Central</collection><collection>ProQuest Central Essentials</collection><collection>AUTh Library subscriptions: ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>Nursing &amp; Allied Health Database (Alumni Edition)</collection><collection>Nursing &amp; Allied Health Premium</collection><collection>Publicly Available Content Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><collection>Open Access: DOAJ - Directory of Open Access Journals</collection><jtitle>Journal of patient-reported outcomes</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Mathias, Susan D.</au><au>Blum, Steven I.</au><au>Sikirica, Vanja</au><au>Johansen, Kirsten L.</au><au>Colwell, Hilary H.</au><au>Okoro, Tony</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Symptoms and impacts in anemia of chronic kidney disease</atitle><jtitle>Journal of patient-reported outcomes</jtitle><stitle>J Patient Rep Outcomes</stitle><addtitle>J Patient Rep Outcomes</addtitle><date>2020-07-29</date><risdate>2020</risdate><volume>4</volume><issue>1</issue><spage>64</spage><epage>10</epage><pages>64-10</pages><artnum>64</artnum><issn>2509-8020</issn><eissn>2509-8020</eissn><abstract>Background Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients’ health-related quality of life. Methods We conducted qualitative concept elicitation (CE) and cognitive debriefing (CD) interviews to assess the frequency, duration, and severity of symptoms and impacts associated with anemia of CKD and to facilitate the development of a new patient-reported outcome (PRO) measure. We interviewed 36 patients with CKD and hemoglobin levels ≥8.0 to &lt;12.0 g/dL using a semi-structured interview guide developed specifically for this study until saturation was reached. We used MAXQDA to perform qualitative analysis of interview transcripts to determine the most relevant symptoms and impacts (based on the frequency of concept mentions) experienced by participants. Results Most participants had stage 4/5 CKD (81%) and were being treated with an erythropoietin stimulating agent (69%). Spontaneously reported symptoms included feeling tired (79%), shortness of breath (39%), and weak/lacking strength (36%). We developed the Chronic Kidney Disease and Anemia Questionnaire (CKD-AQ), which includes 23 items assessing frequency and severity of the most relevant symptoms and impacts identified by patients with anemia of CKD. The CD interviews confirmed the clarity and relevance of the concepts identified in the CE phase. Conclusion The CKD-AQ is a novel PRO measure that captures the frequency and severity of the most relevant symptoms and impacts associated with anemia of CKD. Future studies will evaluate its psychometric properties and its potential utility in anemia management.</abstract><cop>Cham</cop><pub>Springer International Publishing</pub><pmid>32728779</pmid><doi>10.1186/s41687-020-00215-8</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0002-7158-730X</orcidid><oa>free_for_read</oa></addata></record>
fulltext fulltext
identifier ISSN: 2509-8020
ispartof Journal of patient-reported outcomes, 2020-07, Vol.4 (1), p.64-10, Article 64
issn 2509-8020
2509-8020
language eng
recordid cdi_doaj_primary_oai_doaj_org_article_69988b7109314a80b3ca4f61a7c7433f
source Open Access: PubMed Central; Publicly Available Content Database; Springer Nature - SpringerLink Journals - Fully Open Access
subjects Anemia
Chronic kidney disease
Cognitive debriefing
Concept elicitation
Interviews
Kidney diseases
Medicine
Medicine & Public Health
Patient-reported outcomes
Quality of Life Research
Semi-structured interview
title Symptoms and impacts in anemia of chronic kidney disease
url http://sfxeu10.hosted.exlibrisgroup.com/loughborough?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-12-27T02%3A15%3A35IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_doaj_&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Symptoms%20and%20impacts%20in%20anemia%20of%20chronic%20kidney%20disease&rft.jtitle=Journal%20of%20patient-reported%20outcomes&rft.au=Mathias,%20Susan%20D.&rft.date=2020-07-29&rft.volume=4&rft.issue=1&rft.spage=64&rft.epage=10&rft.pages=64-10&rft.artnum=64&rft.issn=2509-8020&rft.eissn=2509-8020&rft_id=info:doi/10.1186/s41687-020-00215-8&rft_dat=%3Cproquest_doaj_%3E2429060033%3C/proquest_doaj_%3E%3Cgrp_id%3Ecdi_FETCH-LOGICAL-c607t-d4ef8ba47a123a6f662b7aae2353b9dd085843dceb7530ba290258ab256cc2533%3C/grp_id%3E%3Coa%3E%3C/oa%3E%3Curl%3E%3C/url%3E&rft_id=info:oai/&rft_pqid=2428281229&rft_id=info:pmid/32728779&rfr_iscdi=true