Development of a Patient-Reported Outcomes Tool to Assess Pain and Discomfort in Autosomal Dominant Polycystic Kidney Disease
Pain has been identified as a core outcome for individuals with autosomal dominant polycystic kidney disease (ADPKD), but no disease-specific pain assessment has been developed using current development methodology for patient-reported outcomes (PRO) instruments. We developed and validated an ADPKD-...
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| Veröffentlicht in: | Clinical journal of the American Society of Nephrology 2023-02, Vol.18 (2), p.213-222 |
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| container_title | Clinical journal of the American Society of Nephrology |
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| creator | Oberdhan, Dorothee Cole, Jason C Atkinson, Mark J Krasa, Holly B Davison, Sara N Perrone, Ronald D |
| description | Pain has been identified as a core outcome for individuals with autosomal dominant polycystic kidney disease (ADPKD), but no disease-specific pain assessment has been developed using current development methodology for patient-reported outcomes (PRO) instruments. We developed and validated an ADPKD-specific pain questionnaire: the ADPKD Pain and Discomfort Scale (ADPKD-PDS).
Conceptual underpinnings were drawn from literature review, concept elicitation, expert consultation, and measurement performance. In the qualitative analysis phase, concepts were elicited from focus groups of adults with ADPKD, and the resulting draft instrument was refined using cognitive debriefing interviews with individuals with ADPKD. For quantitative analysis, adults with ADPKD completed the draft instrument and other PRO tools in an online survey, and a follow-up survey was conducted 3-4 weeks later. Survey responses were analyzed for item-level descriptive statistics, latent model fit statistics, item discrimination, item- and domain-level psychometric statistics, test-retest reliability, responsiveness to change, and convergent validity.
In the qualitative phase, 46 focus groups were conducted in 18 countries with 293 participants. Focus groups described three conceptually distinct types of ADPKD-related pain and discomfort (dull kidney pain, sharp kidney pain, and fullness/discomfort). In the quantitative phase, 298 adults with ADPKD completed the online survey, and 108 participants completed the follow-up survey. After iterative refinement of the instrument, latent variable measurement models showed very good fit (comparative fit and nonnormed fit indices both 0.99), as did item- and domain-level psychometric characteristics. The final ADPKD-PDS contains 20 items assessing pain severity and interference with activities over a 7-day recall period.
The ADPKD-PDS is the first validated tool for systematically assessing pain and discomfort in ADPKD. |
| doi_str_mv | 10.2215/CJN.0000000000000034 |
| format | Article |
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Conceptual underpinnings were drawn from literature review, concept elicitation, expert consultation, and measurement performance. In the qualitative analysis phase, concepts were elicited from focus groups of adults with ADPKD, and the resulting draft instrument was refined using cognitive debriefing interviews with individuals with ADPKD. For quantitative analysis, adults with ADPKD completed the draft instrument and other PRO tools in an online survey, and a follow-up survey was conducted 3-4 weeks later. Survey responses were analyzed for item-level descriptive statistics, latent model fit statistics, item discrimination, item- and domain-level psychometric statistics, test-retest reliability, responsiveness to change, and convergent validity.
In the qualitative phase, 46 focus groups were conducted in 18 countries with 293 participants. Focus groups described three conceptually distinct types of ADPKD-related pain and discomfort (dull kidney pain, sharp kidney pain, and fullness/discomfort). In the quantitative phase, 298 adults with ADPKD completed the online survey, and 108 participants completed the follow-up survey. After iterative refinement of the instrument, latent variable measurement models showed very good fit (comparative fit and nonnormed fit indices both 0.99), as did item- and domain-level psychometric characteristics. The final ADPKD-PDS contains 20 items assessing pain severity and interference with activities over a 7-day recall period.
The ADPKD-PDS is the first validated tool for systematically assessing pain and discomfort in ADPKD.</description><identifier>ISSN: 1555-9041</identifier><identifier>EISSN: 1555-905X</identifier><identifier>DOI: 10.2215/CJN.0000000000000034</identifier><identifier>PMID: 36754008</identifier><language>eng</language><publisher>United States: American Society of Nephrology</publisher><subject>Adult ; Cystic Kidney Disease ; Humans ; Original ; Pain ; Patient Reported Outcome Measures ; Polycystic Kidney, Autosomal Dominant - complications ; Polycystic Kidney, Autosomal Dominant - diagnosis ; Reproducibility of Results ; Surveys and Questionnaires</subject><ispartof>Clinical journal of the American Society of Nephrology, 2023-02, Vol.18 (2), p.213-222</ispartof><rights>Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of American Society of Nephrology.</rights><rights>Copyright © 2023 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of American Society of Nephrology. 2023</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c363t-1938165ad67ae34c4c35e761b03d7ca9277ae2023f5c407ee3f5a40bf5ecd2613</citedby><cites>FETCH-LOGICAL-c363t-1938165ad67ae34c4c35e761b03d7ca9277ae2023f5c407ee3f5a40bf5ecd2613</cites><orcidid>0000-0002-4963-1132 ; 0000-0003-1034-9049 ; 0000-0003-4513-6449</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/PMC10103266/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC10103266/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,881,27901,27902,53766,53768</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36754008$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Oberdhan, Dorothee</creatorcontrib><creatorcontrib>Cole, Jason C</creatorcontrib><creatorcontrib>Atkinson, Mark J</creatorcontrib><creatorcontrib>Krasa, Holly B</creatorcontrib><creatorcontrib>Davison, Sara N</creatorcontrib><creatorcontrib>Perrone, Ronald D</creatorcontrib><title>Development of a Patient-Reported Outcomes Tool to Assess Pain and Discomfort in Autosomal Dominant Polycystic Kidney Disease</title><title>Clinical journal of the American Society of Nephrology</title><addtitle>Clin J Am Soc Nephrol</addtitle><description>Pain has been identified as a core outcome for individuals with autosomal dominant polycystic kidney disease (ADPKD), but no disease-specific pain assessment has been developed using current development methodology for patient-reported outcomes (PRO) instruments. We developed and validated an ADPKD-specific pain questionnaire: the ADPKD Pain and Discomfort Scale (ADPKD-PDS).
Conceptual underpinnings were drawn from literature review, concept elicitation, expert consultation, and measurement performance. In the qualitative analysis phase, concepts were elicited from focus groups of adults with ADPKD, and the resulting draft instrument was refined using cognitive debriefing interviews with individuals with ADPKD. For quantitative analysis, adults with ADPKD completed the draft instrument and other PRO tools in an online survey, and a follow-up survey was conducted 3-4 weeks later. Survey responses were analyzed for item-level descriptive statistics, latent model fit statistics, item discrimination, item- and domain-level psychometric statistics, test-retest reliability, responsiveness to change, and convergent validity.
In the qualitative phase, 46 focus groups were conducted in 18 countries with 293 participants. Focus groups described three conceptually distinct types of ADPKD-related pain and discomfort (dull kidney pain, sharp kidney pain, and fullness/discomfort). In the quantitative phase, 298 adults with ADPKD completed the online survey, and 108 participants completed the follow-up survey. After iterative refinement of the instrument, latent variable measurement models showed very good fit (comparative fit and nonnormed fit indices both 0.99), as did item- and domain-level psychometric characteristics. The final ADPKD-PDS contains 20 items assessing pain severity and interference with activities over a 7-day recall period.
The ADPKD-PDS is the first validated tool for systematically assessing pain and discomfort in ADPKD.</description><subject>Adult</subject><subject>Cystic Kidney Disease</subject><subject>Humans</subject><subject>Original</subject><subject>Pain</subject><subject>Patient Reported Outcome Measures</subject><subject>Polycystic Kidney, Autosomal Dominant - complications</subject><subject>Polycystic Kidney, Autosomal Dominant - diagnosis</subject><subject>Reproducibility of Results</subject><subject>Surveys and Questionnaires</subject><issn>1555-9041</issn><issn>1555-905X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpdUclOwzAQtRAIyvIHCPnIJeA1aU6oatkRRQgkbpbrTMAoiUvsVMqBf8eoUFF8mcXvvZnRQ-iQkhPGqDwd39yfkLXHxQYaUCllkhP5srnKBd1Bu96_EyIEZ3Ib7fA0k4KQ4QB9TmABlZvX0ATsSqzxgw42FskjzF0boMDTLhhXg8dPzlU4ODzyHryPQNtg3RR4Yn0ElBGNY2fUBeddrSs8cbVtdNR9cFVveh-swbe2aKD_poD2sI-2Sl15OPiJe-j54vxpfJXcTS-vx6O7xPCUh4TmfEhTqYs008CFEYZLyFI6I7zIjM5ZFvuMMF5KI0gGEBMtyKyUYAqWUr6Hzpa6825WQ2Hifa2u1Ly1tW575bRV6z-NfVOvbqEooYSzNI0Kxz8KrfvowAdVx6uhqnQDrvMqriCGeZblLELFEmpa530L5WoOJerbOhWtU_-ti7SjvzuuSL9e8S9impbN</recordid><startdate>20230201</startdate><enddate>20230201</enddate><creator>Oberdhan, Dorothee</creator><creator>Cole, Jason C</creator><creator>Atkinson, Mark J</creator><creator>Krasa, Holly B</creator><creator>Davison, Sara N</creator><creator>Perrone, Ronald D</creator><general>American Society of Nephrology</general><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><scope>5PM</scope><orcidid>https://orcid.org/0000-0002-4963-1132</orcidid><orcidid>https://orcid.org/0000-0003-1034-9049</orcidid><orcidid>https://orcid.org/0000-0003-4513-6449</orcidid></search><sort><creationdate>20230201</creationdate><title>Development of a Patient-Reported Outcomes Tool to Assess Pain and Discomfort in Autosomal Dominant Polycystic Kidney Disease</title><author>Oberdhan, Dorothee ; Cole, Jason C ; Atkinson, Mark J ; Krasa, Holly B ; Davison, Sara N ; Perrone, Ronald D</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c363t-1938165ad67ae34c4c35e761b03d7ca9277ae2023f5c407ee3f5a40bf5ecd2613</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Adult</topic><topic>Cystic Kidney Disease</topic><topic>Humans</topic><topic>Original</topic><topic>Pain</topic><topic>Patient Reported Outcome Measures</topic><topic>Polycystic Kidney, Autosomal Dominant - complications</topic><topic>Polycystic Kidney, Autosomal Dominant - diagnosis</topic><topic>Reproducibility of Results</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Oberdhan, Dorothee</creatorcontrib><creatorcontrib>Cole, Jason C</creatorcontrib><creatorcontrib>Atkinson, Mark J</creatorcontrib><creatorcontrib>Krasa, Holly B</creatorcontrib><creatorcontrib>Davison, Sara N</creatorcontrib><creatorcontrib>Perrone, Ronald D</creatorcontrib><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><collection>PubMed Central (Full Participant titles)</collection><jtitle>Clinical journal of the American Society of Nephrology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Oberdhan, Dorothee</au><au>Cole, Jason C</au><au>Atkinson, Mark J</au><au>Krasa, Holly B</au><au>Davison, Sara N</au><au>Perrone, Ronald D</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Development of a Patient-Reported Outcomes Tool to Assess Pain and Discomfort in Autosomal Dominant Polycystic Kidney Disease</atitle><jtitle>Clinical journal of the American Society of Nephrology</jtitle><addtitle>Clin J Am Soc Nephrol</addtitle><date>2023-02-01</date><risdate>2023</risdate><volume>18</volume><issue>2</issue><spage>213</spage><epage>222</epage><pages>213-222</pages><issn>1555-9041</issn><eissn>1555-905X</eissn><abstract>Pain has been identified as a core outcome for individuals with autosomal dominant polycystic kidney disease (ADPKD), but no disease-specific pain assessment has been developed using current development methodology for patient-reported outcomes (PRO) instruments. We developed and validated an ADPKD-specific pain questionnaire: the ADPKD Pain and Discomfort Scale (ADPKD-PDS).
Conceptual underpinnings were drawn from literature review, concept elicitation, expert consultation, and measurement performance. In the qualitative analysis phase, concepts were elicited from focus groups of adults with ADPKD, and the resulting draft instrument was refined using cognitive debriefing interviews with individuals with ADPKD. For quantitative analysis, adults with ADPKD completed the draft instrument and other PRO tools in an online survey, and a follow-up survey was conducted 3-4 weeks later. Survey responses were analyzed for item-level descriptive statistics, latent model fit statistics, item discrimination, item- and domain-level psychometric statistics, test-retest reliability, responsiveness to change, and convergent validity.
In the qualitative phase, 46 focus groups were conducted in 18 countries with 293 participants. Focus groups described three conceptually distinct types of ADPKD-related pain and discomfort (dull kidney pain, sharp kidney pain, and fullness/discomfort). In the quantitative phase, 298 adults with ADPKD completed the online survey, and 108 participants completed the follow-up survey. After iterative refinement of the instrument, latent variable measurement models showed very good fit (comparative fit and nonnormed fit indices both 0.99), as did item- and domain-level psychometric characteristics. The final ADPKD-PDS contains 20 items assessing pain severity and interference with activities over a 7-day recall period.
The ADPKD-PDS is the first validated tool for systematically assessing pain and discomfort in ADPKD.</abstract><cop>United States</cop><pub>American Society of Nephrology</pub><pmid>36754008</pmid><doi>10.2215/CJN.0000000000000034</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0002-4963-1132</orcidid><orcidid>https://orcid.org/0000-0003-1034-9049</orcidid><orcidid>https://orcid.org/0000-0003-4513-6449</orcidid><oa>free_for_read</oa></addata></record> |
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| subjects | Adult Cystic Kidney Disease Humans Original Pain Patient Reported Outcome Measures Polycystic Kidney, Autosomal Dominant - complications Polycystic Kidney, Autosomal Dominant - diagnosis Reproducibility of Results Surveys and Questionnaires |
| title | Development of a Patient-Reported Outcomes Tool to Assess Pain and Discomfort in Autosomal Dominant Polycystic Kidney Disease |
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