Development of the Autosomal Dominant Polycystic Kidney Disease Impact Scale: A New Health-Related Quality-of-Life Instrument
The impact of autosomal dominant polycystic kidney disease (ADPKD) on health-related quality of life (HRQoL) is not well understood due to a lack of instruments specific to the condition. Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL w...
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Veröffentlicht in: | American journal of kidney diseases 2018-02, Vol.71 (2), p.225-235 |
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container_title | American journal of kidney diseases |
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creator | Oberdhan, Dorothee Cole, Jason C. Krasa, Holly B. Cheng, Rebecca Czerwiec, Frank S. Hays, Ron D. Chapman, Arlene B. Perrone, Ronald D. |
description | The impact of autosomal dominant polycystic kidney disease (ADPKD) on health-related quality of life (HRQoL) is not well understood due to a lack of instruments specific to the condition.
Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL was developed through clinical expert and patient focus group discussions. The new PRO instrument was administered to study patients with ADPKD to evaluate its reliability and validity.
1,674 adult patients with ADPKD participated in this research: 285 patients in focus groups to generate questionnaire content, 15 patients in debriefing interviews to refine the PRO questionnaire, and 1,374 patients to assess the performance and measurement properties of the PRO questionnaire.
A new PRO questionnaire.
The ADPKD Impact Scale (ADPKD-IS), consisting of 14 items representing 3 conceptual domains (physical, emotional, and fatigue) plus 4 additional questions, was developed. The instrument’s reliability (regarding internal consistency and test-retest consistency) and validity (content and construct) were supported.
Need for more responsiveness testing when more data from clinical use become available over time. Complex concepts such as ADPKD-related pain and impact on a patient's HRQoL need further evaluation.
The ADPKD-IS is a new patient-centric tool that reliably and validly provides a standardized method for assessing HRQoL and overall disease burden in patients with ADPKD. |
doi_str_mv | 10.1053/j.ajkd.2017.08.020 |
format | Article |
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Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL was developed through clinical expert and patient focus group discussions. The new PRO instrument was administered to study patients with ADPKD to evaluate its reliability and validity.
1,674 adult patients with ADPKD participated in this research: 285 patients in focus groups to generate questionnaire content, 15 patients in debriefing interviews to refine the PRO questionnaire, and 1,374 patients to assess the performance and measurement properties of the PRO questionnaire.
A new PRO questionnaire.
The ADPKD Impact Scale (ADPKD-IS), consisting of 14 items representing 3 conceptual domains (physical, emotional, and fatigue) plus 4 additional questions, was developed. The instrument’s reliability (regarding internal consistency and test-retest consistency) and validity (content and construct) were supported.
Need for more responsiveness testing when more data from clinical use become available over time. Complex concepts such as ADPKD-related pain and impact on a patient's HRQoL need further evaluation.
The ADPKD-IS is a new patient-centric tool that reliably and validly provides a standardized method for assessing HRQoL and overall disease burden in patients with ADPKD.</description><identifier>ISSN: 0272-6386</identifier><identifier>EISSN: 1523-6838</identifier><identifier>DOI: 10.1053/j.ajkd.2017.08.020</identifier><identifier>PMID: 29150246</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>ADPKD ; autosomal dominant ; Cost of Illness ; cystic ; disease burden ; Emotional Adjustment - physiology ; Fatigue - psychology ; Female ; Focus Groups ; Humans ; kidney diseases ; Male ; Middle Aged ; pain ; Patient Reported Outcome Measures ; patient-centered outcomes ; patient-reported outcome (PRO) ; Physical Functional Performance ; Polycystic kidney ; Polycystic Kidney, Autosomal Dominant - physiopathology ; Polycystic Kidney, Autosomal Dominant - psychology ; PRO instrument ; Quality of Life ; quality of life (QoL) ; Reproducibility of Results ; Surveys and Questionnaires - standards</subject><ispartof>American journal of kidney diseases, 2018-02, Vol.71 (2), p.225-235</ispartof><rights>2017 The Authors</rights><rights>Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c466t-7f771ee4a07c35559bf02eca6b359b4848dc905012bf817cb76475f10bc9a0c63</citedby><cites>FETCH-LOGICAL-c466t-7f771ee4a07c35559bf02eca6b359b4848dc905012bf817cb76475f10bc9a0c63</cites><orcidid>0000-0003-1034-9049</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1053/j.ajkd.2017.08.020$$EHTML$$P50$$Gelsevier$$Hfree_for_read</linktohtml><link.rule.ids>314,777,781,3537,27905,27906,45976</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/29150246$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Oberdhan, Dorothee</creatorcontrib><creatorcontrib>Cole, Jason C.</creatorcontrib><creatorcontrib>Krasa, Holly B.</creatorcontrib><creatorcontrib>Cheng, Rebecca</creatorcontrib><creatorcontrib>Czerwiec, Frank S.</creatorcontrib><creatorcontrib>Hays, Ron D.</creatorcontrib><creatorcontrib>Chapman, Arlene B.</creatorcontrib><creatorcontrib>Perrone, Ronald D.</creatorcontrib><title>Development of the Autosomal Dominant Polycystic Kidney Disease Impact Scale: A New Health-Related Quality-of-Life Instrument</title><title>American journal of kidney diseases</title><addtitle>Am J Kidney Dis</addtitle><description>The impact of autosomal dominant polycystic kidney disease (ADPKD) on health-related quality of life (HRQoL) is not well understood due to a lack of instruments specific to the condition.
Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL was developed through clinical expert and patient focus group discussions. The new PRO instrument was administered to study patients with ADPKD to evaluate its reliability and validity.
1,674 adult patients with ADPKD participated in this research: 285 patients in focus groups to generate questionnaire content, 15 patients in debriefing interviews to refine the PRO questionnaire, and 1,374 patients to assess the performance and measurement properties of the PRO questionnaire.
A new PRO questionnaire.
The ADPKD Impact Scale (ADPKD-IS), consisting of 14 items representing 3 conceptual domains (physical, emotional, and fatigue) plus 4 additional questions, was developed. The instrument’s reliability (regarding internal consistency and test-retest consistency) and validity (content and construct) were supported.
Need for more responsiveness testing when more data from clinical use become available over time. Complex concepts such as ADPKD-related pain and impact on a patient's HRQoL need further evaluation.
The ADPKD-IS is a new patient-centric tool that reliably and validly provides a standardized method for assessing HRQoL and overall disease burden in patients with ADPKD.</description><subject>ADPKD</subject><subject>autosomal dominant</subject><subject>Cost of Illness</subject><subject>cystic</subject><subject>disease burden</subject><subject>Emotional Adjustment - physiology</subject><subject>Fatigue - psychology</subject><subject>Female</subject><subject>Focus Groups</subject><subject>Humans</subject><subject>kidney diseases</subject><subject>Male</subject><subject>Middle Aged</subject><subject>pain</subject><subject>Patient Reported Outcome Measures</subject><subject>patient-centered outcomes</subject><subject>patient-reported outcome (PRO)</subject><subject>Physical Functional Performance</subject><subject>Polycystic kidney</subject><subject>Polycystic Kidney, Autosomal Dominant - physiopathology</subject><subject>Polycystic Kidney, Autosomal Dominant - psychology</subject><subject>PRO instrument</subject><subject>Quality of Life</subject><subject>quality of life (QoL)</subject><subject>Reproducibility of Results</subject><subject>Surveys and Questionnaires - standards</subject><issn>0272-6386</issn><issn>1523-6838</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2018</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kE1v1DAQhi1ERbeFP8AB-cglYWwnToK4rLqUVl2V77PlOGPVixNvY6coB_47WW3h2JNH8vO-o3kIec0gZ1CKd7tc7351OQdW5VDnwOEZWbGSi0zWon5OVsArnklRy1NyFuMOABoh5QtyyhtWAi_kivzZ4AP6sO9xSDRYmu6QrqcUYui1p5vQu0EvP1-Cn80ckzP0xnUDznTjIuqI9Lrfa5Pod6M9vqdreou_6RVqn-6yb-h1wo5-nbR3ac6CzbbOLpEhpnE6bHxJTqz2EV89vufk5-XHHxdX2fbzp-uL9TYzhZQpq2xVMcRCQ2VEWZZNa4Gj0bIVy1zURd2ZBkpgvLU1q0xbyaIqLYPWNBqMFOfk7bF3P4b7CWNSvYsGvdcDhikq1kjJBeO8WVB-RM0YYhzRqv3oej3OioE6aFc7ddCuDtoV1GrRvoTePPZPbY_d_8g_zwvw4QjgcuWDw1FF43Aw2LkRTVJdcE_1_wXN-JQp</recordid><startdate>201802</startdate><enddate>201802</enddate><creator>Oberdhan, Dorothee</creator><creator>Cole, Jason C.</creator><creator>Krasa, Holly B.</creator><creator>Cheng, Rebecca</creator><creator>Czerwiec, Frank S.</creator><creator>Hays, Ron D.</creator><creator>Chapman, Arlene B.</creator><creator>Perrone, Ronald D.</creator><general>Elsevier Inc</general><scope>6I.</scope><scope>AAFTH</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0003-1034-9049</orcidid></search><sort><creationdate>201802</creationdate><title>Development of the Autosomal Dominant Polycystic Kidney Disease Impact Scale: A New Health-Related Quality-of-Life Instrument</title><author>Oberdhan, Dorothee ; Cole, Jason C. ; Krasa, Holly B. ; Cheng, Rebecca ; Czerwiec, Frank S. ; Hays, Ron D. ; Chapman, Arlene B. ; Perrone, Ronald D.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c466t-7f771ee4a07c35559bf02eca6b359b4848dc905012bf817cb76475f10bc9a0c63</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2018</creationdate><topic>ADPKD</topic><topic>autosomal dominant</topic><topic>Cost of Illness</topic><topic>cystic</topic><topic>disease burden</topic><topic>Emotional Adjustment - physiology</topic><topic>Fatigue - psychology</topic><topic>Female</topic><topic>Focus Groups</topic><topic>Humans</topic><topic>kidney diseases</topic><topic>Male</topic><topic>Middle Aged</topic><topic>pain</topic><topic>Patient Reported Outcome Measures</topic><topic>patient-centered outcomes</topic><topic>patient-reported outcome (PRO)</topic><topic>Physical Functional Performance</topic><topic>Polycystic kidney</topic><topic>Polycystic Kidney, Autosomal Dominant - physiopathology</topic><topic>Polycystic Kidney, Autosomal Dominant - psychology</topic><topic>PRO instrument</topic><topic>Quality of Life</topic><topic>quality of life (QoL)</topic><topic>Reproducibility of Results</topic><topic>Surveys and Questionnaires - standards</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Oberdhan, Dorothee</creatorcontrib><creatorcontrib>Cole, Jason C.</creatorcontrib><creatorcontrib>Krasa, Holly B.</creatorcontrib><creatorcontrib>Cheng, Rebecca</creatorcontrib><creatorcontrib>Czerwiec, Frank S.</creatorcontrib><creatorcontrib>Hays, Ron D.</creatorcontrib><creatorcontrib>Chapman, Arlene B.</creatorcontrib><creatorcontrib>Perrone, Ronald D.</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>American journal of kidney diseases</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Oberdhan, Dorothee</au><au>Cole, Jason C.</au><au>Krasa, Holly B.</au><au>Cheng, Rebecca</au><au>Czerwiec, Frank S.</au><au>Hays, Ron D.</au><au>Chapman, Arlene B.</au><au>Perrone, Ronald D.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Development of the Autosomal Dominant Polycystic Kidney Disease Impact Scale: A New Health-Related Quality-of-Life Instrument</atitle><jtitle>American journal of kidney diseases</jtitle><addtitle>Am J Kidney Dis</addtitle><date>2018-02</date><risdate>2018</risdate><volume>71</volume><issue>2</issue><spage>225</spage><epage>235</epage><pages>225-235</pages><issn>0272-6386</issn><eissn>1523-6838</eissn><abstract>The impact of autosomal dominant polycystic kidney disease (ADPKD) on health-related quality of life (HRQoL) is not well understood due to a lack of instruments specific to the condition.
Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL was developed through clinical expert and patient focus group discussions. The new PRO instrument was administered to study patients with ADPKD to evaluate its reliability and validity.
1,674 adult patients with ADPKD participated in this research: 285 patients in focus groups to generate questionnaire content, 15 patients in debriefing interviews to refine the PRO questionnaire, and 1,374 patients to assess the performance and measurement properties of the PRO questionnaire.
A new PRO questionnaire.
The ADPKD Impact Scale (ADPKD-IS), consisting of 14 items representing 3 conceptual domains (physical, emotional, and fatigue) plus 4 additional questions, was developed. The instrument’s reliability (regarding internal consistency and test-retest consistency) and validity (content and construct) were supported.
Need for more responsiveness testing when more data from clinical use become available over time. Complex concepts such as ADPKD-related pain and impact on a patient's HRQoL need further evaluation.
The ADPKD-IS is a new patient-centric tool that reliably and validly provides a standardized method for assessing HRQoL and overall disease burden in patients with ADPKD.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>29150246</pmid><doi>10.1053/j.ajkd.2017.08.020</doi><tpages>11</tpages><orcidid>https://orcid.org/0000-0003-1034-9049</orcidid><oa>free_for_read</oa></addata></record> |
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source | MEDLINE; Elsevier ScienceDirect Journals |
subjects | ADPKD autosomal dominant Cost of Illness cystic disease burden Emotional Adjustment - physiology Fatigue - psychology Female Focus Groups Humans kidney diseases Male Middle Aged pain Patient Reported Outcome Measures patient-centered outcomes patient-reported outcome (PRO) Physical Functional Performance Polycystic kidney Polycystic Kidney, Autosomal Dominant - physiopathology Polycystic Kidney, Autosomal Dominant - psychology PRO instrument Quality of Life quality of life (QoL) Reproducibility of Results Surveys and Questionnaires - standards |
title | Development of the Autosomal Dominant Polycystic Kidney Disease Impact Scale: A New Health-Related Quality-of-Life Instrument |
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