Explaining Change Over Time in Quality of Life of Adult Patients With Anorectal Malformations or Hirschsprung's Disease
The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding...
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| Veröffentlicht in: | Diseases of the colon & rectum 2006-01, Vol.49 (1), p.96-103 |
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| creator | Hartman, Esther E Oort, Frans J Visser, Mechteld R Sprangers, Mirjam A Hanneman, Marianne J. G de Langen, Zacharias J van Heurn, L W. Ernest Rieu, Paul N. M. A Madern, Gerard C van der Zee, David C Looyaard, Nic van Silfhout-Bezemer, Marina Aronson, Daniel C |
| description | The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care.
Questionnaires were administered to 261 patients (77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice.
On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition" most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease.
Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients. |
| doi_str_mv | 10.1007/s10350-005-0216-4 |
| format | Article |
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Questionnaires were administered to 261 patients (77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice.
On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition" most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease.
Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients.</description><identifier>ISSN: 0012-3706</identifier><identifier>EISSN: 1530-0358</identifier><identifier>DOI: 10.1007/s10350-005-0216-4</identifier><identifier>PMID: 16328611</identifier><identifier>CODEN: DICRAG</identifier><language>eng</language><publisher>Secaucus, NJ: The ASCRS</publisher><subject>Adolescent ; Adult ; Anal Canal - abnormalities ; Biological and medical sciences ; Female ; Gastroenterology. Liver. Pancreas. Abdomen ; Hirschsprung Disease - psychology ; Humans ; Male ; Medical sciences ; Middle Aged ; Netherlands ; Quality of Life ; Rectum - abnormalities ; Retrospective Studies ; Surveys and Questionnaires ; Time Factors</subject><ispartof>Diseases of the colon & rectum, 2006-01, Vol.49 (1), p.96-103</ispartof><rights>The ASCRS 2006</rights><rights>2006 INIST-CNRS</rights><rights>The American Society of Colon and Rectal Surgeons 2005</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4012-738fd83f4ecf389f5915ed1411b9dd98c7094167a2b9083e5d5889b1e6ba2fca3</citedby><cites>FETCH-LOGICAL-c4012-738fd83f4ecf389f5915ed1411b9dd98c7094167a2b9083e5d5889b1e6ba2fca3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>309,310,314,776,780,785,786,4036,4037,23909,23910,25118,27901,27902</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=17665761$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/16328611$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hartman, Esther E</creatorcontrib><creatorcontrib>Oort, Frans J</creatorcontrib><creatorcontrib>Visser, Mechteld R</creatorcontrib><creatorcontrib>Sprangers, Mirjam A</creatorcontrib><creatorcontrib>Hanneman, Marianne J. G</creatorcontrib><creatorcontrib>de Langen, Zacharias J</creatorcontrib><creatorcontrib>van Heurn, L W. Ernest</creatorcontrib><creatorcontrib>Rieu, Paul N. M. A</creatorcontrib><creatorcontrib>Madern, Gerard C</creatorcontrib><creatorcontrib>van der Zee, David C</creatorcontrib><creatorcontrib>Looyaard, Nic</creatorcontrib><creatorcontrib>van Silfhout-Bezemer, Marina</creatorcontrib><creatorcontrib>Aronson, Daniel C</creatorcontrib><title>Explaining Change Over Time in Quality of Life of Adult Patients With Anorectal Malformations or Hirschsprung's Disease</title><title>Diseases of the colon & rectum</title><addtitle>Dis Colon Rectum</addtitle><description>The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care.
Questionnaires were administered to 261 patients (77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice.
On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition" most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease.
Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Anal Canal - abnormalities</subject><subject>Biological and medical sciences</subject><subject>Female</subject><subject>Gastroenterology. Liver. Pancreas. Abdomen</subject><subject>Hirschsprung Disease - psychology</subject><subject>Humans</subject><subject>Male</subject><subject>Medical sciences</subject><subject>Middle Aged</subject><subject>Netherlands</subject><subject>Quality of Life</subject><subject>Rectum - abnormalities</subject><subject>Retrospective Studies</subject><subject>Surveys and Questionnaires</subject><subject>Time Factors</subject><issn>0012-3706</issn><issn>1530-0358</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2006</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNpdkluL1DAUgIMo7uzoD_BFguD6VD1pLm0fh3F1hZFVWPExpO3pNGuajknruP_elBlY8OmQ5DsXzhdCXjF4zwCKD5EBl5AByAxypjLxhKyY5OmGy_IpWQGwPOMFqAtyGeN9OkIOxXNywRTPS8XYihyv_x6csd76Pd32xu-R3v7BQO_sgNR6-n02zk4PdOzozna4xE07u4l-M5NFP0X600493fgxYDMZR78a141hSK-jj3QM9MaG2PTxEGa_fxfpRxvRRHxBnnXGRXx5jmvy49P13fYm291-_rLd7LJGLMMXvOzakncCm46XVScrJrFlgrG6atuqbAqoBFOFyesKSo6ylWVZ1QxVbfKuMXxNrk51D2H8PWOc9GBjg84Zj-MctSoUVFDJBL75D7wf5-DTbDpnAqQq07LXhJ2gJowxBuz0IdjBhAfNQC9K9EmJTkr0okSLlPP6XHiuB2wfM84OEvD2DJjYpO0F4xsbH7lCKVmohRMn7ji6CUP85eYjBt2jcVOfOgJwIXmWAyhRJdXpX6QV8n_-XaK6</recordid><startdate>200601</startdate><enddate>200601</enddate><creator>Hartman, Esther E</creator><creator>Oort, Frans J</creator><creator>Visser, Mechteld R</creator><creator>Sprangers, Mirjam A</creator><creator>Hanneman, Marianne J. 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Abdomen</topic><topic>Hirschsprung Disease - psychology</topic><topic>Humans</topic><topic>Male</topic><topic>Medical sciences</topic><topic>Middle Aged</topic><topic>Netherlands</topic><topic>Quality of Life</topic><topic>Rectum - abnormalities</topic><topic>Retrospective Studies</topic><topic>Surveys and Questionnaires</topic><topic>Time Factors</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hartman, Esther E</creatorcontrib><creatorcontrib>Oort, Frans J</creatorcontrib><creatorcontrib>Visser, Mechteld R</creatorcontrib><creatorcontrib>Sprangers, Mirjam A</creatorcontrib><creatorcontrib>Hanneman, Marianne J. G</creatorcontrib><creatorcontrib>de Langen, Zacharias J</creatorcontrib><creatorcontrib>van Heurn, L W. Ernest</creatorcontrib><creatorcontrib>Rieu, Paul N. M. A</creatorcontrib><creatorcontrib>Madern, Gerard C</creatorcontrib><creatorcontrib>van der Zee, David C</creatorcontrib><creatorcontrib>Looyaard, Nic</creatorcontrib><creatorcontrib>van Silfhout-Bezemer, Marina</creatorcontrib><creatorcontrib>Aronson, Daniel C</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>ProQuest Health & Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><jtitle>Diseases of the colon & rectum</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hartman, Esther E</au><au>Oort, Frans J</au><au>Visser, Mechteld R</au><au>Sprangers, Mirjam A</au><au>Hanneman, Marianne J. G</au><au>de Langen, Zacharias J</au><au>van Heurn, L W. Ernest</au><au>Rieu, Paul N. M. A</au><au>Madern, Gerard C</au><au>van der Zee, David C</au><au>Looyaard, Nic</au><au>van Silfhout-Bezemer, Marina</au><au>Aronson, Daniel C</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Explaining Change Over Time in Quality of Life of Adult Patients With Anorectal Malformations or Hirschsprung's Disease</atitle><jtitle>Diseases of the colon & rectum</jtitle><addtitle>Dis Colon Rectum</addtitle><date>2006-01</date><risdate>2006</risdate><volume>49</volume><issue>1</issue><spage>96</spage><epage>103</epage><pages>96-103</pages><issn>0012-3706</issn><eissn>1530-0358</eissn><coden>DICRAG</coden><abstract>The aim of this study was to examine changes in the quality of life of adult patients with anorectal malformations or Hirschsprung's disease over a three-year interval and to identify demographic, clinical, and psychosocial variables that explain possible quality-of-life changes. Understanding the factors that affect changes in quality of life over time is particularly important to provide adequate care.
Questionnaires were administered to 261 patients (77 percent), with a three-year interval. Background characteristics, including demographic and clinical variables, and psychosocial variables (i.e., self-esteem, mastery, social support, disease cognition) were measured on one occasion. Generic and disease-specific quality of life were measured twice.
On average patients indicated no change in quality-of-life level after three years. However, variance in the change scores revealed individual variation, indicating the presence of patients who improved and patients who deteriorated. Patients who were female, older, have other congenital diseases, or a stoma reported poorer quality of life over time. The psychosocial variable "disease cognition" most strongly affected the change in quality of life of patients with anorectal malformations or Hirschsprung's disease.
Our results could alert clinicians to patients who are at risk for quality-of-life deterioration and might therefore be in need for extra care. Our findings illustrate the importance of psychosocial functioning for enhancing the quality of life over time of these patients.</abstract><cop>Secaucus, NJ</cop><pub>The ASCRS</pub><pmid>16328611</pmid><doi>10.1007/s10350-005-0216-4</doi><tpages>8</tpages></addata></record> |
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| ispartof | Diseases of the colon & rectum, 2006-01, Vol.49 (1), p.96-103 |
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| language | eng |
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| source | MEDLINE; SpringerLink Journals; Journals@Ovid Complete |
| subjects | Adolescent Adult Anal Canal - abnormalities Biological and medical sciences Female Gastroenterology. Liver. Pancreas. Abdomen Hirschsprung Disease - psychology Humans Male Medical sciences Middle Aged Netherlands Quality of Life Rectum - abnormalities Retrospective Studies Surveys and Questionnaires Time Factors |
| title | Explaining Change Over Time in Quality of Life of Adult Patients With Anorectal Malformations or Hirschsprung's Disease |
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