Measuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics
ABSTRACT Objective: To extend development of a pediatric inflammatory bowel disease (IBD) health‐related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables. Patients and Methods: Cross‐sectional survey of...
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Veröffentlicht in: | Journal of pediatric gastroenterology and nutrition 2008-02, Vol.46 (2), p.164-171 |
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container_title | Journal of pediatric gastroenterology and nutrition |
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creator | Perrin, James M Kuhlthau, Karen Chughtai, Aziz Romm, Diane Kirschner, Barbara S Ferry, George D Cohen, Stanley A Gold, Benjamin D Heyman, Melvin B Baldassano, Robert N Winter, Harland S |
description | ABSTRACT
Objective:
To extend development of a pediatric inflammatory bowel disease (IBD) health‐related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.
Patients and Methods:
Cross‐sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age‐eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD‐specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.
Results:
We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well‐being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.
Conclusions:
This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators. |
doi_str_mv | 10.1097/MPG.0b013e31812f7f4e |
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Objective:
To extend development of a pediatric inflammatory bowel disease (IBD) health‐related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.
Patients and Methods:
Cross‐sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age‐eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD‐specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.
Results:
We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well‐being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.
Conclusions:
This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.</description><identifier>ISSN: 0277-2116</identifier><identifier>EISSN: 1536-4801</identifier><identifier>DOI: 10.1097/MPG.0b013e31812f7f4e</identifier><identifier>PMID: 18223375</identifier><identifier>CODEN: JPGND6</identifier><language>eng</language><publisher>Hagerstown, MD: Lippincott Williams & Wilkins, Inc</publisher><subject>Adolescent ; Biological and medical sciences ; Body Image ; Child ; Chronic Disease ; Crohn disease ; Cross-Sectional Studies ; Disease activity ; Factor Analysis, Statistical ; Female ; Functional status ; Gastroenterology. Liver. Pancreas. Abdomen ; Humans ; Inflammatory Bowel Diseases - pathology ; Inflammatory Bowel Diseases - psychology ; Male ; Medical sciences ; Other diseases. Semiology ; Quality of Life ; Severity of Illness Index ; Social Adjustment ; Stomach. Duodenum. Small intestine. Colon. Rectum. Anus ; Stress, Psychological ; Surveys and Questionnaires ; Ulcerative colitis ; Well‐being</subject><ispartof>Journal of pediatric gastroenterology and nutrition, 2008-02, Vol.46 (2), p.164-171</ispartof><rights>2008 by European Society for European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition</rights><rights>2008 Lippincott Williams & Wilkins, Inc.</rights><rights>2008 INIST-CNRS</rights><rights>2008 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition 2008</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5357-f1e95de552df6873bdaa6d8ac3d835c540302d6814ab0e21ee598528dfcecad13</citedby><cites>FETCH-LOGICAL-c5357-f1e95de552df6873bdaa6d8ac3d835c540302d6814ab0e21ee598528dfcecad13</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1097%2FMPG.0b013e31812f7f4e$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1097%2FMPG.0b013e31812f7f4e$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,780,784,885,1417,27924,27925,45574,45575</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=20052783$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/18223375$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Perrin, James M</creatorcontrib><creatorcontrib>Kuhlthau, Karen</creatorcontrib><creatorcontrib>Chughtai, Aziz</creatorcontrib><creatorcontrib>Romm, Diane</creatorcontrib><creatorcontrib>Kirschner, Barbara S</creatorcontrib><creatorcontrib>Ferry, George D</creatorcontrib><creatorcontrib>Cohen, Stanley A</creatorcontrib><creatorcontrib>Gold, Benjamin D</creatorcontrib><creatorcontrib>Heyman, Melvin B</creatorcontrib><creatorcontrib>Baldassano, Robert N</creatorcontrib><creatorcontrib>Winter, Harland S</creatorcontrib><title>Measuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics</title><title>Journal of pediatric gastroenterology and nutrition</title><addtitle>J Pediatr Gastroenterol Nutr</addtitle><description>ABSTRACT
Objective:
To extend development of a pediatric inflammatory bowel disease (IBD) health‐related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.
Patients and Methods:
Cross‐sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age‐eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD‐specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.
Results:
We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well‐being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.
Conclusions:
This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.</description><subject>Adolescent</subject><subject>Biological and medical sciences</subject><subject>Body Image</subject><subject>Child</subject><subject>Chronic Disease</subject><subject>Crohn disease</subject><subject>Cross-Sectional Studies</subject><subject>Disease activity</subject><subject>Factor Analysis, Statistical</subject><subject>Female</subject><subject>Functional status</subject><subject>Gastroenterology. Liver. Pancreas. Abdomen</subject><subject>Humans</subject><subject>Inflammatory Bowel Diseases - pathology</subject><subject>Inflammatory Bowel Diseases - psychology</subject><subject>Male</subject><subject>Medical sciences</subject><subject>Other diseases. Semiology</subject><subject>Quality of Life</subject><subject>Severity of Illness Index</subject><subject>Social Adjustment</subject><subject>Stomach. Duodenum. Small intestine. Colon. Rectum. Anus</subject><subject>Stress, Psychological</subject><subject>Surveys and Questionnaires</subject><subject>Ulcerative colitis</subject><subject>Well‐being</subject><issn>0277-2116</issn><issn>1536-4801</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2008</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqNkUFv1DAQhSMEokvhHyDkC9xSxnYce5GoRBdailpYJBBHa9aZdA1OUuyE1fLrcemqBU5cbMnzvTfjeUXxmMMBh7l-fr48OYAVcEmSGy5a3VZ0p5hxJeuyMsDvFjMQWpeC83qveJDSVwDQlYL7xR43Qkip1az4eU6Ypuj7C_ZxwuDHLRtaduZbYr5nS2o8jtE7tsTRUz8m9sWPa3batwG7DschbtnRsKHAXvuUnegFW6atWw8d_ZZh37BF8L13GNhijRHdSNGn0bv0sLjXYkj0aHfvF5-P33xavC3PPpycLl6dlU5JpcuW01w1pJRo2tpouWoQ68agk42RyqkKJIimNrzCFZDgRGpulDBN68hhw-V-cXjtezmtOmpc_kbEYC-j7zBu7YDe_l3p_dpeDD-shDpPILPBs51BHL5PlEbb-eQoBOxpmJLVIORcCchgdQ26OKQUqb1pwsFehWZzaPbf0LLsyZ8D3op2KWXg6Q7AlBfZRuydTzecAFBCG3nbfzOEvOb0LUwbinZNGMa1zfGD4rouM28gH1BePekse7mT-UDb_5rZvlu-l0fHUGlh5C_qC8Z-</recordid><startdate>200802</startdate><enddate>200802</enddate><creator>Perrin, James M</creator><creator>Kuhlthau, Karen</creator><creator>Chughtai, Aziz</creator><creator>Romm, Diane</creator><creator>Kirschner, Barbara S</creator><creator>Ferry, George D</creator><creator>Cohen, Stanley A</creator><creator>Gold, Benjamin D</creator><creator>Heyman, Melvin B</creator><creator>Baldassano, Robert N</creator><creator>Winter, Harland S</creator><general>Lippincott Williams & Wilkins, Inc</general><general>Lippincott</general><scope>IQODW</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><scope>5PM</scope></search><sort><creationdate>200802</creationdate><title>Measuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics</title><author>Perrin, James M ; Kuhlthau, Karen ; Chughtai, Aziz ; Romm, Diane ; Kirschner, Barbara S ; Ferry, George D ; Cohen, Stanley A ; Gold, Benjamin D ; Heyman, Melvin B ; Baldassano, Robert N ; Winter, Harland S</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5357-f1e95de552df6873bdaa6d8ac3d835c540302d6814ab0e21ee598528dfcecad13</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2008</creationdate><topic>Adolescent</topic><topic>Biological and medical sciences</topic><topic>Body Image</topic><topic>Child</topic><topic>Chronic Disease</topic><topic>Crohn disease</topic><topic>Cross-Sectional Studies</topic><topic>Disease activity</topic><topic>Factor Analysis, Statistical</topic><topic>Female</topic><topic>Functional status</topic><topic>Gastroenterology. Liver. Pancreas. Abdomen</topic><topic>Humans</topic><topic>Inflammatory Bowel Diseases - pathology</topic><topic>Inflammatory Bowel Diseases - psychology</topic><topic>Male</topic><topic>Medical sciences</topic><topic>Other diseases. Semiology</topic><topic>Quality of Life</topic><topic>Severity of Illness Index</topic><topic>Social Adjustment</topic><topic>Stomach. Duodenum. Small intestine. Colon. Rectum. Anus</topic><topic>Stress, Psychological</topic><topic>Surveys and Questionnaires</topic><topic>Ulcerative colitis</topic><topic>Well‐being</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Perrin, James M</creatorcontrib><creatorcontrib>Kuhlthau, Karen</creatorcontrib><creatorcontrib>Chughtai, Aziz</creatorcontrib><creatorcontrib>Romm, Diane</creatorcontrib><creatorcontrib>Kirschner, Barbara S</creatorcontrib><creatorcontrib>Ferry, George D</creatorcontrib><creatorcontrib>Cohen, Stanley A</creatorcontrib><creatorcontrib>Gold, Benjamin D</creatorcontrib><creatorcontrib>Heyman, Melvin B</creatorcontrib><creatorcontrib>Baldassano, Robert N</creatorcontrib><creatorcontrib>Winter, Harland S</creatorcontrib><collection>Pascal-Francis</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><collection>PubMed Central (Full Participant titles)</collection><jtitle>Journal of pediatric gastroenterology and nutrition</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Perrin, James M</au><au>Kuhlthau, Karen</au><au>Chughtai, Aziz</au><au>Romm, Diane</au><au>Kirschner, Barbara S</au><au>Ferry, George D</au><au>Cohen, Stanley A</au><au>Gold, Benjamin D</au><au>Heyman, Melvin B</au><au>Baldassano, Robert N</au><au>Winter, Harland S</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Measuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics</atitle><jtitle>Journal of pediatric gastroenterology and nutrition</jtitle><addtitle>J Pediatr Gastroenterol Nutr</addtitle><date>2008-02</date><risdate>2008</risdate><volume>46</volume><issue>2</issue><spage>164</spage><epage>171</epage><pages>164-171</pages><issn>0277-2116</issn><eissn>1536-4801</eissn><coden>JPGND6</coden><abstract>ABSTRACT
Objective:
To extend development of a pediatric inflammatory bowel disease (IBD) health‐related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.
Patients and Methods:
Cross‐sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age‐eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD‐specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.
Results:
We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well‐being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.
Conclusions:
This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.</abstract><cop>Hagerstown, MD</cop><pub>Lippincott Williams & Wilkins, Inc</pub><pmid>18223375</pmid><doi>10.1097/MPG.0b013e31812f7f4e</doi><tpages>8</tpages><oa>free_for_read</oa></addata></record> |
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subjects | Adolescent Biological and medical sciences Body Image Child Chronic Disease Crohn disease Cross-Sectional Studies Disease activity Factor Analysis, Statistical Female Functional status Gastroenterology. Liver. Pancreas. Abdomen Humans Inflammatory Bowel Diseases - pathology Inflammatory Bowel Diseases - psychology Male Medical sciences Other diseases. Semiology Quality of Life Severity of Illness Index Social Adjustment Stomach. Duodenum. Small intestine. Colon. Rectum. Anus Stress, Psychological Surveys and Questionnaires Ulcerative colitis Well‐being |
title | Measuring Quality of Life in Pediatric Patients With Inflammatory Bowel Disease: Psychometric and Clinical Characteristics |
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