Translation and validation of the Hirschsprung and anorectal malformation quality of life (HAQL) questionnaire in a Danish Hirschsprung population
Background Hirschsprung’s disease (HD) may result in an impaired quality of life (QoL) due to bowel problems, postoperative complications and other health-related issues. The Hirschsprung and Anorectal Malformation Quality of Life (HAQL) questionnaire is a disease-specific instrument developed in th...
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| Veröffentlicht in: | Pediatric surgery international 2024-02, Vol.40 (1), p.52, Article 52 |
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| creator | Gosvig, Kristina Jensen, Signe Steenstrup Sjölander, Hannes Hansen, Nina Højer Möller, Sören Qvist, Niels Ellebæk, Mark Bremholm |
| description | Background
Hirschsprung’s disease (HD) may result in an impaired quality of life (QoL) due to bowel problems, postoperative complications and other health-related issues. The Hirschsprung and Anorectal Malformation Quality of Life (HAQL) questionnaire is a disease-specific instrument developed in the Netherlands to measure the QoL in patients with HD and anorectal malformations. The aim of this study was to translate, culturally adapt and validate HAQL in a Danish Hirschsprung population.
Material and methods
Translation and cultural adaptation were performed according to international guidelines. Invitations to participate in the validation were sent to 401 patients operated for HD during the period from 1985 to 2012. A total of 156 patients completed the translated and culturally adapted Danish versions of HAQL and 35 parents of children and adolescents completed the corresponding parent questionnaire. Reliability was evaluated in terms of internal consistency using Cronbach’s
α
and test–retest reliability using Intraclass Correlation Coefficient for the retest step. Known groups comparison was performed with comparison of mild HD (defined as recto-sigmoidal HD) and serious HD (defined as more proximal disease).
Results
The internal consistency of the dimensions was overall satisfactory for adults and adolescents but more problematic for children, where Cronbach’s
α
was less than 0.7 in 60% of the dimensions. For both children and adolescents, the
α
-value was unsatisfactory for social functioning, emotional functioning, and body image. The test–retest reliability was overall good. The known groups comparison was only able to demonstrate a significant difference between mild and severe HD within one dimension.
Conclusions
The translated version of the HAQL questionnaires provides an overall reliable instrument for evaluating disease-specific QoL in a Danish HD population, but it is important to acknowledge the limitations of the questionnaire, especially in children and adolescents. |
| doi_str_mv | 10.1007/s00383-024-05634-y |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_10857969</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2924060783</sourcerecordid><originalsourceid>FETCH-LOGICAL-c426t-8b7b9d5326700b4790ca4af8ee0dec9b2c509d04d3e6f349708ce2c82c71a72c3</originalsourceid><addsrcrecordid>eNp9kc1u1DAUhS0Eou3AC7BAkdiUReDGduJ4hapCmUojVUhlbTmOM-PKsYOdVJrX6BPjTEp_WHTlv3POvdcfQh8K-FIAsK8RgNQkB0xzKCtC8_0rdFxQwnJeF-T1k_0ROonxBgBqUvG36CjZCGW8OEZ310G6aOVovMuka7NbaU27HH2XjTudrU2IaheHMLntQSKdD1qN0ma9tJ0P_SL_MyXruJ9t1nQ6O12f_dp8Ttc6zu9OmqAzk6pk36Uzcfc8ePDDtLTxDr3ppI36_f26Qr8vflyfr_PN1c_L87NNriiuxrxuWMPbkuCKATRpGlCSyq7WGlqteINVCbwF2hJddYRyBrXSWNVYsUIyrMgKfVtyh6npdau0G4O0Ygiml2EvvDTi-YszO7H1t6KAumS84inh9D4h-MOYojdRaWul036KAnNcJkYzpRX69J_0xk_BpflmFYUKWGKyQnhRqeBjDLp76KYAMTMXC3ORmIsDc7FPpo9P53iw_IOcBGQRpK82bqvDY-0XYv8CkAC7kg</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2924060783</pqid></control><display><type>article</type><title>Translation and validation of the Hirschsprung and anorectal malformation quality of life (HAQL) questionnaire in a Danish Hirschsprung population</title><source>MEDLINE</source><source>Springer Nature - Complete Springer Journals</source><creator>Gosvig, Kristina ; Jensen, Signe Steenstrup ; Sjölander, Hannes ; Hansen, Nina Højer ; Möller, Sören ; Qvist, Niels ; Ellebæk, Mark Bremholm</creator><creatorcontrib>Gosvig, Kristina ; Jensen, Signe Steenstrup ; Sjölander, Hannes ; Hansen, Nina Højer ; Möller, Sören ; Qvist, Niels ; Ellebæk, Mark Bremholm</creatorcontrib><description>Background
Hirschsprung’s disease (HD) may result in an impaired quality of life (QoL) due to bowel problems, postoperative complications and other health-related issues. The Hirschsprung and Anorectal Malformation Quality of Life (HAQL) questionnaire is a disease-specific instrument developed in the Netherlands to measure the QoL in patients with HD and anorectal malformations. The aim of this study was to translate, culturally adapt and validate HAQL in a Danish Hirschsprung population.
Material and methods
Translation and cultural adaptation were performed according to international guidelines. Invitations to participate in the validation were sent to 401 patients operated for HD during the period from 1985 to 2012. A total of 156 patients completed the translated and culturally adapted Danish versions of HAQL and 35 parents of children and adolescents completed the corresponding parent questionnaire. Reliability was evaluated in terms of internal consistency using Cronbach’s
α
and test–retest reliability using Intraclass Correlation Coefficient for the retest step. Known groups comparison was performed with comparison of mild HD (defined as recto-sigmoidal HD) and serious HD (defined as more proximal disease).
Results
The internal consistency of the dimensions was overall satisfactory for adults and adolescents but more problematic for children, where Cronbach’s
α
was less than 0.7 in 60% of the dimensions. For both children and adolescents, the
α
-value was unsatisfactory for social functioning, emotional functioning, and body image. The test–retest reliability was overall good. The known groups comparison was only able to demonstrate a significant difference between mild and severe HD within one dimension.
Conclusions
The translated version of the HAQL questionnaires provides an overall reliable instrument for evaluating disease-specific QoL in a Danish HD population, but it is important to acknowledge the limitations of the questionnaire, especially in children and adolescents.</description><identifier>ISSN: 1437-9813</identifier><identifier>ISSN: 0179-0358</identifier><identifier>EISSN: 1437-9813</identifier><identifier>DOI: 10.1007/s00383-024-05634-y</identifier><identifier>PMID: 38334791</identifier><language>eng</language><publisher>Berlin/Heidelberg: Springer Berlin Heidelberg</publisher><subject>Adolescent ; Adult ; Anorectal Malformations - complications ; Child ; Denmark ; Hirschsprung Disease - complications ; Hirschsprung Disease - surgery ; Humans ; Medicine ; Medicine & Public Health ; Original ; Original Article ; Pediatric Surgery ; Pediatrics ; Quality of Life ; Questionnaires ; Reproducibility of Results ; Surgery ; Surveys and Questionnaires ; Teenagers</subject><ispartof>Pediatric surgery international, 2024-02, Vol.40 (1), p.52, Article 52</ispartof><rights>The Author(s) 2024</rights><rights>2024. The Author(s).</rights><rights>Copyright Springer Nature B.V. Dec 2024</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c426t-8b7b9d5326700b4790ca4af8ee0dec9b2c509d04d3e6f349708ce2c82c71a72c3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s00383-024-05634-y$$EPDF$$P50$$Gspringer$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s00383-024-05634-y$$EHTML$$P50$$Gspringer$$Hfree_for_read</linktohtml><link.rule.ids>230,314,776,780,881,27903,27904,41467,42536,51297</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/38334791$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Gosvig, Kristina</creatorcontrib><creatorcontrib>Jensen, Signe Steenstrup</creatorcontrib><creatorcontrib>Sjölander, Hannes</creatorcontrib><creatorcontrib>Hansen, Nina Højer</creatorcontrib><creatorcontrib>Möller, Sören</creatorcontrib><creatorcontrib>Qvist, Niels</creatorcontrib><creatorcontrib>Ellebæk, Mark Bremholm</creatorcontrib><title>Translation and validation of the Hirschsprung and anorectal malformation quality of life (HAQL) questionnaire in a Danish Hirschsprung population</title><title>Pediatric surgery international</title><addtitle>Pediatr Surg Int</addtitle><addtitle>Pediatr Surg Int</addtitle><description>Background
Hirschsprung’s disease (HD) may result in an impaired quality of life (QoL) due to bowel problems, postoperative complications and other health-related issues. The Hirschsprung and Anorectal Malformation Quality of Life (HAQL) questionnaire is a disease-specific instrument developed in the Netherlands to measure the QoL in patients with HD and anorectal malformations. The aim of this study was to translate, culturally adapt and validate HAQL in a Danish Hirschsprung population.
Material and methods
Translation and cultural adaptation were performed according to international guidelines. Invitations to participate in the validation were sent to 401 patients operated for HD during the period from 1985 to 2012. A total of 156 patients completed the translated and culturally adapted Danish versions of HAQL and 35 parents of children and adolescents completed the corresponding parent questionnaire. Reliability was evaluated in terms of internal consistency using Cronbach’s
α
and test–retest reliability using Intraclass Correlation Coefficient for the retest step. Known groups comparison was performed with comparison of mild HD (defined as recto-sigmoidal HD) and serious HD (defined as more proximal disease).
Results
The internal consistency of the dimensions was overall satisfactory for adults and adolescents but more problematic for children, where Cronbach’s
α
was less than 0.7 in 60% of the dimensions. For both children and adolescents, the
α
-value was unsatisfactory for social functioning, emotional functioning, and body image. The test–retest reliability was overall good. The known groups comparison was only able to demonstrate a significant difference between mild and severe HD within one dimension.
Conclusions
The translated version of the HAQL questionnaires provides an overall reliable instrument for evaluating disease-specific QoL in a Danish HD population, but it is important to acknowledge the limitations of the questionnaire, especially in children and adolescents.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Anorectal Malformations - complications</subject><subject>Child</subject><subject>Denmark</subject><subject>Hirschsprung Disease - complications</subject><subject>Hirschsprung Disease - surgery</subject><subject>Humans</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Original</subject><subject>Original Article</subject><subject>Pediatric Surgery</subject><subject>Pediatrics</subject><subject>Quality of Life</subject><subject>Questionnaires</subject><subject>Reproducibility of Results</subject><subject>Surgery</subject><subject>Surveys and Questionnaires</subject><subject>Teenagers</subject><issn>1437-9813</issn><issn>0179-0358</issn><issn>1437-9813</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>C6C</sourceid><sourceid>EIF</sourceid><recordid>eNp9kc1u1DAUhS0Eou3AC7BAkdiUReDGduJ4hapCmUojVUhlbTmOM-PKsYOdVJrX6BPjTEp_WHTlv3POvdcfQh8K-FIAsK8RgNQkB0xzKCtC8_0rdFxQwnJeF-T1k_0ROonxBgBqUvG36CjZCGW8OEZ310G6aOVovMuka7NbaU27HH2XjTudrU2IaheHMLntQSKdD1qN0ma9tJ0P_SL_MyXruJ9t1nQ6O12f_dp8Ttc6zu9OmqAzk6pk36Uzcfc8ePDDtLTxDr3ppI36_f26Qr8vflyfr_PN1c_L87NNriiuxrxuWMPbkuCKATRpGlCSyq7WGlqteINVCbwF2hJddYRyBrXSWNVYsUIyrMgKfVtyh6npdau0G4O0Ygiml2EvvDTi-YszO7H1t6KAumS84inh9D4h-MOYojdRaWul036KAnNcJkYzpRX69J_0xk_BpflmFYUKWGKyQnhRqeBjDLp76KYAMTMXC3ORmIsDc7FPpo9P53iw_IOcBGQRpK82bqvDY-0XYv8CkAC7kg</recordid><startdate>20240209</startdate><enddate>20240209</enddate><creator>Gosvig, Kristina</creator><creator>Jensen, Signe Steenstrup</creator><creator>Sjölander, Hannes</creator><creator>Hansen, Nina Højer</creator><creator>Möller, Sören</creator><creator>Qvist, Niels</creator><creator>Ellebæk, Mark Bremholm</creator><general>Springer Berlin Heidelberg</general><general>Springer Nature B.V</general><scope>C6C</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>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20240209</creationdate><title>Translation and validation of the Hirschsprung and anorectal malformation quality of life (HAQL) questionnaire in a Danish Hirschsprung population</title><author>Gosvig, Kristina ; Jensen, Signe Steenstrup ; Sjölander, Hannes ; Hansen, Nina Højer ; Möller, Sören ; Qvist, Niels ; Ellebæk, Mark Bremholm</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c426t-8b7b9d5326700b4790ca4af8ee0dec9b2c509d04d3e6f349708ce2c82c71a72c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Anorectal Malformations - complications</topic><topic>Child</topic><topic>Denmark</topic><topic>Hirschsprung Disease - complications</topic><topic>Hirschsprung Disease - surgery</topic><topic>Humans</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Original</topic><topic>Original Article</topic><topic>Pediatric Surgery</topic><topic>Pediatrics</topic><topic>Quality of Life</topic><topic>Questionnaires</topic><topic>Reproducibility of Results</topic><topic>Surgery</topic><topic>Surveys and Questionnaires</topic><topic>Teenagers</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Gosvig, Kristina</creatorcontrib><creatorcontrib>Jensen, Signe Steenstrup</creatorcontrib><creatorcontrib>Sjölander, Hannes</creatorcontrib><creatorcontrib>Hansen, Nina Højer</creatorcontrib><creatorcontrib>Möller, Sören</creatorcontrib><creatorcontrib>Qvist, Niels</creatorcontrib><creatorcontrib>Ellebæk, Mark Bremholm</creatorcontrib><collection>Springer Nature OA Free Journals</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 Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Pediatric surgery international</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Gosvig, Kristina</au><au>Jensen, Signe Steenstrup</au><au>Sjölander, Hannes</au><au>Hansen, Nina Højer</au><au>Möller, Sören</au><au>Qvist, Niels</au><au>Ellebæk, Mark Bremholm</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Translation and validation of the Hirschsprung and anorectal malformation quality of life (HAQL) questionnaire in a Danish Hirschsprung population</atitle><jtitle>Pediatric surgery international</jtitle><stitle>Pediatr Surg Int</stitle><addtitle>Pediatr Surg Int</addtitle><date>2024-02-09</date><risdate>2024</risdate><volume>40</volume><issue>1</issue><spage>52</spage><pages>52-</pages><artnum>52</artnum><issn>1437-9813</issn><issn>0179-0358</issn><eissn>1437-9813</eissn><abstract>Background
Hirschsprung’s disease (HD) may result in an impaired quality of life (QoL) due to bowel problems, postoperative complications and other health-related issues. The Hirschsprung and Anorectal Malformation Quality of Life (HAQL) questionnaire is a disease-specific instrument developed in the Netherlands to measure the QoL in patients with HD and anorectal malformations. The aim of this study was to translate, culturally adapt and validate HAQL in a Danish Hirschsprung population.
Material and methods
Translation and cultural adaptation were performed according to international guidelines. Invitations to participate in the validation were sent to 401 patients operated for HD during the period from 1985 to 2012. A total of 156 patients completed the translated and culturally adapted Danish versions of HAQL and 35 parents of children and adolescents completed the corresponding parent questionnaire. Reliability was evaluated in terms of internal consistency using Cronbach’s
α
and test–retest reliability using Intraclass Correlation Coefficient for the retest step. Known groups comparison was performed with comparison of mild HD (defined as recto-sigmoidal HD) and serious HD (defined as more proximal disease).
Results
The internal consistency of the dimensions was overall satisfactory for adults and adolescents but more problematic for children, where Cronbach’s
α
was less than 0.7 in 60% of the dimensions. For both children and adolescents, the
α
-value was unsatisfactory for social functioning, emotional functioning, and body image. The test–retest reliability was overall good. The known groups comparison was only able to demonstrate a significant difference between mild and severe HD within one dimension.
Conclusions
The translated version of the HAQL questionnaires provides an overall reliable instrument for evaluating disease-specific QoL in a Danish HD population, but it is important to acknowledge the limitations of the questionnaire, especially in children and adolescents.</abstract><cop>Berlin/Heidelberg</cop><pub>Springer Berlin Heidelberg</pub><pmid>38334791</pmid><doi>10.1007/s00383-024-05634-y</doi><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1437-9813 |
| ispartof | Pediatric surgery international, 2024-02, Vol.40 (1), p.52, Article 52 |
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| language | eng |
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| source | MEDLINE; Springer Nature - Complete Springer Journals |
| subjects | Adolescent Adult Anorectal Malformations - complications Child Denmark Hirschsprung Disease - complications Hirschsprung Disease - surgery Humans Medicine Medicine & Public Health Original Original Article Pediatric Surgery Pediatrics Quality of Life Questionnaires Reproducibility of Results Surgery Surveys and Questionnaires Teenagers |
| title | Translation and validation of the Hirschsprung and anorectal malformation quality of life (HAQL) questionnaire in a Danish Hirschsprung population |
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