Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale
IntroductionCrohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new v...
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| Veröffentlicht in: | Gut 2021-09, Vol.70 (9), p.1649-1656 |
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| creator | Adegbola, Samuel O Dibley, Lesley Sahnan, Kapil Wade, Tiffany Verjee, Azmina Sawyer, Rachel Mannick, Sameer McCluskey, Damian Bassett, Paul Yassin, Nuha Warusavitarne, Janindra Faiz, Omar Phillips, Robin Tozer, Phil J Norton, Christine Hart, Ailsa L |
| description | IntroductionCrohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype.MethodsA draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis.ResultsData from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS.ConclusionThe CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient. |
| doi_str_mv | 10.1136/gutjnl-2019-320553 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_8355881</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2558933791</sourcerecordid><originalsourceid>FETCH-LOGICAL-b534t-25d3e1029f328bcfca4109281f18c20b2b4f48eee27b592cf8a6fd7c38e085c3</originalsourceid><addsrcrecordid>eNqNks1u1DAUhSMEokPhBVggS2zKIuCf_DgsKo0GBpBGQpW6txznuuOREwfbGWl2vAZv0Wfqk-AopSqsWNnWOfe7vlcny14T_J4QVn24meJhsDnFpMkZxWXJnmQrUlQ8vTh_mq0wJnVe1kVzlr0I4YAx5rwhz7MzxmhNm5qvsttPcATrxh6GiOTQITOYaKRFYzipvesheqPQUVrTyWjcgJxGEo3pngpyD6PzETrkpqiSGfUgw-QBaefRxrv9cPfzV0AjeCOHBNUmxMnKjyju4ZG-nrXtoqGrKTWLp7nRzmhAF5v1Nr9yu3coKGnhZfZMSxvg1f15nl1vP19vvua771--bda7vC1ZEXNadgwIpo1Ou2iVVrIguKGcaMIVxS1tC11wAKB1WzZUaS4r3dWKccC8VOw8u1yw49T20Kk0rZdWjN700p-Ek0b8rQxmL27cUXBWlpyTBLi4B3j3Y4IQRW-CAmvlAG4KghZVXVFCSZGsb_-xHtzk006SK8EaxupmBtLFpbwLwYN--AzBYs6DWPIg5jyIJQ-p6M3jMR5K_gQgGfLF0PaH_wH-Bknexog</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2558933791</pqid></control><display><type>article</type><title>Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale</title><source>MEDLINE</source><source>PubMed Central</source><creator>Adegbola, Samuel O ; Dibley, Lesley ; Sahnan, Kapil ; Wade, Tiffany ; Verjee, Azmina ; Sawyer, Rachel ; Mannick, Sameer ; McCluskey, Damian ; Bassett, Paul ; Yassin, Nuha ; Warusavitarne, Janindra ; Faiz, Omar ; Phillips, Robin ; Tozer, Phil J ; Norton, Christine ; Hart, Ailsa L</creator><creatorcontrib>Adegbola, Samuel O ; Dibley, Lesley ; Sahnan, Kapil ; Wade, Tiffany ; Verjee, Azmina ; Sawyer, Rachel ; Mannick, Sameer ; McCluskey, Damian ; Bassett, Paul ; Yassin, Nuha ; Warusavitarne, Janindra ; Faiz, Omar ; Phillips, Robin ; Tozer, Phil J ; Norton, Christine ; Hart, Ailsa L</creatorcontrib><description>IntroductionCrohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype.MethodsA draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis.ResultsData from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS.ConclusionThe CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient.</description><identifier>ISSN: 0017-5749</identifier><identifier>EISSN: 1468-3288</identifier><identifier>DOI: 10.1136/gutjnl-2019-320553</identifier><identifier>PMID: 33272978</identifier><language>eng</language><publisher>England: BMJ Publishing Group LTD</publisher><subject>Adult ; Crohn Disease - complications ; Crohn Disease - psychology ; Crohn Disease - therapy ; Disease ; Female ; Fistula ; Fistulae ; Humans ; Inflammatory Bowel Disease ; Inflammatory bowel diseases ; Likert scale ; Male ; Patient Reported Outcome Measures ; Patients ; Phenotypes ; Psychiatric Status Rating Scales ; Psychometrics ; Quality of life ; Quality of Life - psychology ; Quantitative psychology ; Questionnaires ; Rectal Fistula - etiology ; Rectal Fistula - psychology ; Rectal Fistula - therapy ; Reproducibility of Results ; Surveys and Questionnaires ; Systematic review ; Treatment Outcome</subject><ispartof>Gut, 2021-09, Vol.70 (9), p.1649-1656</ispartof><rights>Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.</rights><rights>2021 Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2021</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b534t-25d3e1029f328bcfca4109281f18c20b2b4f48eee27b592cf8a6fd7c38e085c3</citedby><cites>FETCH-LOGICAL-b534t-25d3e1029f328bcfca4109281f18c20b2b4f48eee27b592cf8a6fd7c38e085c3</cites><orcidid>0000-0003-3885-5752 ; 0000-0003-2522-3895</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/PMC8355881/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8355881/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,885,27924,27925,53791,53793</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33272978$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Adegbola, Samuel O</creatorcontrib><creatorcontrib>Dibley, Lesley</creatorcontrib><creatorcontrib>Sahnan, Kapil</creatorcontrib><creatorcontrib>Wade, Tiffany</creatorcontrib><creatorcontrib>Verjee, Azmina</creatorcontrib><creatorcontrib>Sawyer, Rachel</creatorcontrib><creatorcontrib>Mannick, Sameer</creatorcontrib><creatorcontrib>McCluskey, Damian</creatorcontrib><creatorcontrib>Bassett, Paul</creatorcontrib><creatorcontrib>Yassin, Nuha</creatorcontrib><creatorcontrib>Warusavitarne, Janindra</creatorcontrib><creatorcontrib>Faiz, Omar</creatorcontrib><creatorcontrib>Phillips, Robin</creatorcontrib><creatorcontrib>Tozer, Phil J</creatorcontrib><creatorcontrib>Norton, Christine</creatorcontrib><creatorcontrib>Hart, Ailsa L</creatorcontrib><title>Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale</title><title>Gut</title><addtitle>Gut</addtitle><description>IntroductionCrohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype.MethodsA draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis.ResultsData from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS.ConclusionThe CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient.</description><subject>Adult</subject><subject>Crohn Disease - complications</subject><subject>Crohn Disease - psychology</subject><subject>Crohn Disease - therapy</subject><subject>Disease</subject><subject>Female</subject><subject>Fistula</subject><subject>Fistulae</subject><subject>Humans</subject><subject>Inflammatory Bowel Disease</subject><subject>Inflammatory bowel diseases</subject><subject>Likert scale</subject><subject>Male</subject><subject>Patient Reported Outcome Measures</subject><subject>Patients</subject><subject>Phenotypes</subject><subject>Psychiatric Status Rating Scales</subject><subject>Psychometrics</subject><subject>Quality of life</subject><subject>Quality of Life - psychology</subject><subject>Quantitative psychology</subject><subject>Questionnaires</subject><subject>Rectal Fistula - etiology</subject><subject>Rectal Fistula - psychology</subject><subject>Rectal Fistula - therapy</subject><subject>Reproducibility of Results</subject><subject>Surveys and Questionnaires</subject><subject>Systematic review</subject><subject>Treatment Outcome</subject><issn>0017-5749</issn><issn>1468-3288</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>9YT</sourceid><sourceid>ACMMV</sourceid><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqNks1u1DAUhSMEokPhBVggS2zKIuCf_DgsKo0GBpBGQpW6txznuuOREwfbGWl2vAZv0Wfqk-AopSqsWNnWOfe7vlcny14T_J4QVn24meJhsDnFpMkZxWXJnmQrUlQ8vTh_mq0wJnVe1kVzlr0I4YAx5rwhz7MzxmhNm5qvsttPcATrxh6GiOTQITOYaKRFYzipvesheqPQUVrTyWjcgJxGEo3pngpyD6PzETrkpqiSGfUgw-QBaefRxrv9cPfzV0AjeCOHBNUmxMnKjyju4ZG-nrXtoqGrKTWLp7nRzmhAF5v1Nr9yu3coKGnhZfZMSxvg1f15nl1vP19vvua771--bda7vC1ZEXNadgwIpo1Ou2iVVrIguKGcaMIVxS1tC11wAKB1WzZUaS4r3dWKccC8VOw8u1yw49T20Kk0rZdWjN700p-Ek0b8rQxmL27cUXBWlpyTBLi4B3j3Y4IQRW-CAmvlAG4KghZVXVFCSZGsb_-xHtzk006SK8EaxupmBtLFpbwLwYN--AzBYs6DWPIg5jyIJQ-p6M3jMR5K_gQgGfLF0PaH_wH-Bknexog</recordid><startdate>20210901</startdate><enddate>20210901</enddate><creator>Adegbola, Samuel O</creator><creator>Dibley, Lesley</creator><creator>Sahnan, Kapil</creator><creator>Wade, Tiffany</creator><creator>Verjee, Azmina</creator><creator>Sawyer, Rachel</creator><creator>Mannick, Sameer</creator><creator>McCluskey, Damian</creator><creator>Bassett, Paul</creator><creator>Yassin, Nuha</creator><creator>Warusavitarne, Janindra</creator><creator>Faiz, Omar</creator><creator>Phillips, Robin</creator><creator>Tozer, Phil J</creator><creator>Norton, Christine</creator><creator>Hart, Ailsa L</creator><general>BMJ Publishing Group LTD</general><general>BMJ Publishing Group</general><scope>9YT</scope><scope>ACMMV</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>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88I</scope><scope>8AF</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>BTHHO</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>K9.</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M2P</scope><scope>M7P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>Q9U</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-3885-5752</orcidid><orcidid>https://orcid.org/0000-0003-2522-3895</orcidid></search><sort><creationdate>20210901</creationdate><title>Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale</title><author>Adegbola, Samuel O ; Dibley, Lesley ; Sahnan, Kapil ; Wade, Tiffany ; Verjee, Azmina ; Sawyer, Rachel ; Mannick, Sameer ; McCluskey, Damian ; Bassett, Paul ; Yassin, Nuha ; Warusavitarne, Janindra ; Faiz, Omar ; Phillips, Robin ; Tozer, Phil J ; Norton, Christine ; Hart, Ailsa L</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-b534t-25d3e1029f328bcfca4109281f18c20b2b4f48eee27b592cf8a6fd7c38e085c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Adult</topic><topic>Crohn Disease - complications</topic><topic>Crohn Disease - psychology</topic><topic>Crohn Disease - therapy</topic><topic>Disease</topic><topic>Female</topic><topic>Fistula</topic><topic>Fistulae</topic><topic>Humans</topic><topic>Inflammatory Bowel Disease</topic><topic>Inflammatory bowel diseases</topic><topic>Likert scale</topic><topic>Male</topic><topic>Patient Reported Outcome Measures</topic><topic>Patients</topic><topic>Phenotypes</topic><topic>Psychiatric Status Rating Scales</topic><topic>Psychometrics</topic><topic>Quality of life</topic><topic>Quality of Life - psychology</topic><topic>Quantitative psychology</topic><topic>Questionnaires</topic><topic>Rectal Fistula - etiology</topic><topic>Rectal Fistula - psychology</topic><topic>Rectal Fistula - therapy</topic><topic>Reproducibility of Results</topic><topic>Surveys and Questionnaires</topic><topic>Systematic review</topic><topic>Treatment Outcome</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Adegbola, Samuel O</creatorcontrib><creatorcontrib>Dibley, Lesley</creatorcontrib><creatorcontrib>Sahnan, Kapil</creatorcontrib><creatorcontrib>Wade, Tiffany</creatorcontrib><creatorcontrib>Verjee, Azmina</creatorcontrib><creatorcontrib>Sawyer, Rachel</creatorcontrib><creatorcontrib>Mannick, Sameer</creatorcontrib><creatorcontrib>McCluskey, Damian</creatorcontrib><creatorcontrib>Bassett, Paul</creatorcontrib><creatorcontrib>Yassin, Nuha</creatorcontrib><creatorcontrib>Warusavitarne, Janindra</creatorcontrib><creatorcontrib>Faiz, Omar</creatorcontrib><creatorcontrib>Phillips, Robin</creatorcontrib><creatorcontrib>Tozer, Phil J</creatorcontrib><creatorcontrib>Norton, Christine</creatorcontrib><creatorcontrib>Hart, Ailsa L</creatorcontrib><collection>BMJ Open Access Journals</collection><collection>BMJ Journals: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>ProQuest Central (Corporate)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Science Database (Alumni Edition)</collection><collection>STEM Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</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 Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>BMJ Journals</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>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>ProQuest Biological Science Collection</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Science Database</collection><collection>Biological Science 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 Basic</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Gut</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Adegbola, Samuel O</au><au>Dibley, Lesley</au><au>Sahnan, Kapil</au><au>Wade, Tiffany</au><au>Verjee, Azmina</au><au>Sawyer, Rachel</au><au>Mannick, Sameer</au><au>McCluskey, Damian</au><au>Bassett, Paul</au><au>Yassin, Nuha</au><au>Warusavitarne, Janindra</au><au>Faiz, Omar</au><au>Phillips, Robin</au><au>Tozer, Phil J</au><au>Norton, Christine</au><au>Hart, Ailsa L</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale</atitle><jtitle>Gut</jtitle><addtitle>Gut</addtitle><date>2021-09-01</date><risdate>2021</risdate><volume>70</volume><issue>9</issue><spage>1649</spage><epage>1656</epage><pages>1649-1656</pages><issn>0017-5749</issn><eissn>1468-3288</eissn><abstract>IntroductionCrohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype.MethodsA draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis.ResultsData from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS.ConclusionThe CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient.</abstract><cop>England</cop><pub>BMJ Publishing Group LTD</pub><pmid>33272978</pmid><doi>10.1136/gutjnl-2019-320553</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0003-3885-5752</orcidid><orcidid>https://orcid.org/0000-0003-2522-3895</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Gut, 2021-09, Vol.70 (9), p.1649-1656 |
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| source | MEDLINE; PubMed Central |
| subjects | Adult Crohn Disease - complications Crohn Disease - psychology Crohn Disease - therapy Disease Female Fistula Fistulae Humans Inflammatory Bowel Disease Inflammatory bowel diseases Likert scale Male Patient Reported Outcome Measures Patients Phenotypes Psychiatric Status Rating Scales Psychometrics Quality of life Quality of Life - psychology Quantitative psychology Questionnaires Rectal Fistula - etiology Rectal Fistula - psychology Rectal Fistula - therapy Reproducibility of Results Surveys and Questionnaires Systematic review Treatment Outcome |
| title | Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale |
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