Development of a disease-specific health-related quality of life questionnaire (THYCA-QoL) for thyroid cancer survivors
Abstract Background. To date, no valid instrument is available that focuses on specific health-related quality of life (HRQoL) issues that affect thyroid cancer survivors. The objective of this study was to develop and pretest a thyroid cancer specific HRQoL questionnaire that can be used in additio...
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| Veröffentlicht in: | Acta oncologica 2013-02, Vol.52 (2), p.447-454 |
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| creator | Husson, Olga Haak, Harm R. Mols, Floortje Nieuwenhuijzen, Grard A. Nieuwlaat, Willy-Anne Reemst, Peter H. Huysmans, Dyde A. Toorians, Arno W. van de Poll-Franse, Lonneke v. |
| description | Abstract
Background. To date, no valid instrument is available that focuses on specific health-related quality of life (HRQoL) issues that affect thyroid cancer survivors. The objective of this study was to develop and pretest a thyroid cancer specific HRQoL questionnaire that can be used in addition to the more general European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Material and methods. Potentially relevant issues were identified by a systematic literature review, a focus group meeting, and an issue list completed by six health care professionals (HCP) and 18 thyroid cancer survivors. Resultant issues were analyzed on importance and relevance (phase I). The issues were formulated into a long provisional list of questions (phase II). These questions were administered in combination with the EORTC QLQ-C30 to 306 Dutch thyroid cancer survivors to pretest the hypothesized scale structure (phase III). Although the development of this questionnaire was not set up as an international study, phases I-III are in agreement with the methodology of the EORTC guidelines. Results. The literature search, focus group and issue list completed by HCP and survivors resulted in 75 issues. These were reduced to create a 30 item provisional list. Pretesting led to a selection of 24 items with a good range of response. This resulted in the THYCA-QoL containing 24 items and seven conceptual scales. Conclusion. The THYCA-QoL in combination with the EORTC QLQ-C30 is ready for a large (international) scale validation study, and will assess HRQoL issues of most relevance and concern for thyroid cancer survivors. |
| doi_str_mv | 10.3109/0284186X.2012.718445 |
| format | Article |
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Background. To date, no valid instrument is available that focuses on specific health-related quality of life (HRQoL) issues that affect thyroid cancer survivors. The objective of this study was to develop and pretest a thyroid cancer specific HRQoL questionnaire that can be used in addition to the more general European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Material and methods. Potentially relevant issues were identified by a systematic literature review, a focus group meeting, and an issue list completed by six health care professionals (HCP) and 18 thyroid cancer survivors. Resultant issues were analyzed on importance and relevance (phase I). The issues were formulated into a long provisional list of questions (phase II). These questions were administered in combination with the EORTC QLQ-C30 to 306 Dutch thyroid cancer survivors to pretest the hypothesized scale structure (phase III). Although the development of this questionnaire was not set up as an international study, phases I-III are in agreement with the methodology of the EORTC guidelines. Results. The literature search, focus group and issue list completed by HCP and survivors resulted in 75 issues. These were reduced to create a 30 item provisional list. Pretesting led to a selection of 24 items with a good range of response. This resulted in the THYCA-QoL containing 24 items and seven conceptual scales. Conclusion. The THYCA-QoL in combination with the EORTC QLQ-C30 is ready for a large (international) scale validation study, and will assess HRQoL issues of most relevance and concern for thyroid cancer survivors.</description><identifier>ISSN: 0284-186X</identifier><identifier>EISSN: 1651-226X</identifier><identifier>DOI: 10.3109/0284186X.2012.718445</identifier><identifier>PMID: 23013266</identifier><language>eng</language><publisher>England: Informa Healthcare</publisher><subject>Adult ; Aged ; Female ; Health Status ; Humans ; Male ; Middle Aged ; Quality of Life - psychology ; Surveys and Questionnaires ; Survivors - psychology ; Survivors - statistics & numerical data ; Thyroid Neoplasms - complications ; Thyroid Neoplasms - mortality ; Thyroid Neoplasms - psychology ; Thyroid Neoplasms - rehabilitation ; Young Adult</subject><ispartof>Acta oncologica, 2013-02, Vol.52 (2), p.447-454</ispartof><rights>2013 Informa Healthcare 2013</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c428t-78e163540fe01398724a61479a80ebfd43ed2c31718b8d652e712c096bdbf7e53</citedby><cites>FETCH-LOGICAL-c428t-78e163540fe01398724a61479a80ebfd43ed2c31718b8d652e712c096bdbf7e53</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.tandfonline.com/doi/pdf/10.3109/0284186X.2012.718445$$EPDF$$P50$$Ginformahealthcare$$H</linktopdf><linktohtml>$$Uhttps://www.tandfonline.com/doi/full/10.3109/0284186X.2012.718445$$EHTML$$P50$$Ginformahealthcare$$H</linktohtml><link.rule.ids>314,780,784,27924,27925,61221,61402</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/23013266$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Husson, Olga</creatorcontrib><creatorcontrib>Haak, Harm R.</creatorcontrib><creatorcontrib>Mols, Floortje</creatorcontrib><creatorcontrib>Nieuwenhuijzen, Grard A.</creatorcontrib><creatorcontrib>Nieuwlaat, Willy-Anne</creatorcontrib><creatorcontrib>Reemst, Peter H.</creatorcontrib><creatorcontrib>Huysmans, Dyde A.</creatorcontrib><creatorcontrib>Toorians, Arno W.</creatorcontrib><creatorcontrib>van de Poll-Franse, Lonneke v.</creatorcontrib><title>Development of a disease-specific health-related quality of life questionnaire (THYCA-QoL) for thyroid cancer survivors</title><title>Acta oncologica</title><addtitle>Acta Oncol</addtitle><description>Abstract
Background. To date, no valid instrument is available that focuses on specific health-related quality of life (HRQoL) issues that affect thyroid cancer survivors. The objective of this study was to develop and pretest a thyroid cancer specific HRQoL questionnaire that can be used in addition to the more general European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Material and methods. Potentially relevant issues were identified by a systematic literature review, a focus group meeting, and an issue list completed by six health care professionals (HCP) and 18 thyroid cancer survivors. Resultant issues were analyzed on importance and relevance (phase I). The issues were formulated into a long provisional list of questions (phase II). These questions were administered in combination with the EORTC QLQ-C30 to 306 Dutch thyroid cancer survivors to pretest the hypothesized scale structure (phase III). Although the development of this questionnaire was not set up as an international study, phases I-III are in agreement with the methodology of the EORTC guidelines. Results. The literature search, focus group and issue list completed by HCP and survivors resulted in 75 issues. These were reduced to create a 30 item provisional list. Pretesting led to a selection of 24 items with a good range of response. This resulted in the THYCA-QoL containing 24 items and seven conceptual scales. Conclusion. The THYCA-QoL in combination with the EORTC QLQ-C30 is ready for a large (international) scale validation study, and will assess HRQoL issues of most relevance and concern for thyroid cancer survivors.</description><subject>Adult</subject><subject>Aged</subject><subject>Female</subject><subject>Health Status</subject><subject>Humans</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Quality of Life - psychology</subject><subject>Surveys and Questionnaires</subject><subject>Survivors - psychology</subject><subject>Survivors - statistics & numerical data</subject><subject>Thyroid Neoplasms - complications</subject><subject>Thyroid Neoplasms - mortality</subject><subject>Thyroid Neoplasms - psychology</subject><subject>Thyroid Neoplasms - rehabilitation</subject><subject>Young Adult</subject><issn>0284-186X</issn><issn>1651-226X</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2013</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kEtr3DAURkVJaCZp_0EpWiYLT_SyJG8CYZI0hYFSSCFdCVm-YhRsayrZU-bf166TLru6XDj38R2EPlGy5pRU14RpQbV8XjNC2VpRLUT5Dq2oLGnBmHw-QasZKWbmDJ3n_EIIYVyV79EZ44RyJuUK_b6DA7Rx30E_4OixxU3IYDMUeQ8u-ODwDmw77IoErR2gwb9G24bhOMNt8DD1kIcQ-96GBPjy6fHn5rb4HrdX2MeEh90xxdBgZ3sHCecxHcIhpvwBnXrbZvj4Wi_Qj4f7p81jsf325evmdls4wfRQKA1U8lIQD9PHlVZMWEmFqqwmUPtGcGiY43SKX-tGlgwUZY5Usm5qr6DkF-hy2btP8e-npgvZQdvaHuKYDWWKl0pX5YyKBXUp5pzAm30KnU1HQ4mZlZs35WZWbhbl09jn1wtj3UHzb-jN8QTcLEDoJyOdXXw6m8C8xDH1U_z_X_gDc6mQow</recordid><startdate>20130201</startdate><enddate>20130201</enddate><creator>Husson, Olga</creator><creator>Haak, Harm R.</creator><creator>Mols, Floortje</creator><creator>Nieuwenhuijzen, Grard A.</creator><creator>Nieuwlaat, Willy-Anne</creator><creator>Reemst, Peter H.</creator><creator>Huysmans, Dyde A.</creator><creator>Toorians, Arno W.</creator><creator>van de Poll-Franse, Lonneke v.</creator><general>Informa Healthcare</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></search><sort><creationdate>20130201</creationdate><title>Development of a disease-specific health-related quality of life questionnaire (THYCA-QoL) for thyroid cancer survivors</title><author>Husson, Olga ; Haak, Harm R. ; Mols, Floortje ; Nieuwenhuijzen, Grard A. ; Nieuwlaat, Willy-Anne ; Reemst, Peter H. ; Huysmans, Dyde A. ; Toorians, Arno W. ; van de Poll-Franse, Lonneke v.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c428t-78e163540fe01398724a61479a80ebfd43ed2c31718b8d652e712c096bdbf7e53</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2013</creationdate><topic>Adult</topic><topic>Aged</topic><topic>Female</topic><topic>Health Status</topic><topic>Humans</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Quality of Life - psychology</topic><topic>Surveys and Questionnaires</topic><topic>Survivors - psychology</topic><topic>Survivors - statistics & numerical data</topic><topic>Thyroid Neoplasms - complications</topic><topic>Thyroid Neoplasms - mortality</topic><topic>Thyroid Neoplasms - psychology</topic><topic>Thyroid Neoplasms - rehabilitation</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Husson, Olga</creatorcontrib><creatorcontrib>Haak, Harm R.</creatorcontrib><creatorcontrib>Mols, Floortje</creatorcontrib><creatorcontrib>Nieuwenhuijzen, Grard A.</creatorcontrib><creatorcontrib>Nieuwlaat, Willy-Anne</creatorcontrib><creatorcontrib>Reemst, Peter H.</creatorcontrib><creatorcontrib>Huysmans, Dyde A.</creatorcontrib><creatorcontrib>Toorians, Arno W.</creatorcontrib><creatorcontrib>van de Poll-Franse, Lonneke v.</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><jtitle>Acta oncologica</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Husson, Olga</au><au>Haak, Harm R.</au><au>Mols, Floortje</au><au>Nieuwenhuijzen, Grard A.</au><au>Nieuwlaat, Willy-Anne</au><au>Reemst, Peter H.</au><au>Huysmans, Dyde A.</au><au>Toorians, Arno W.</au><au>van de Poll-Franse, Lonneke v.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Development of a disease-specific health-related quality of life questionnaire (THYCA-QoL) for thyroid cancer survivors</atitle><jtitle>Acta oncologica</jtitle><addtitle>Acta Oncol</addtitle><date>2013-02-01</date><risdate>2013</risdate><volume>52</volume><issue>2</issue><spage>447</spage><epage>454</epage><pages>447-454</pages><issn>0284-186X</issn><eissn>1651-226X</eissn><abstract>Abstract
Background. To date, no valid instrument is available that focuses on specific health-related quality of life (HRQoL) issues that affect thyroid cancer survivors. The objective of this study was to develop and pretest a thyroid cancer specific HRQoL questionnaire that can be used in addition to the more general European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Material and methods. Potentially relevant issues were identified by a systematic literature review, a focus group meeting, and an issue list completed by six health care professionals (HCP) and 18 thyroid cancer survivors. Resultant issues were analyzed on importance and relevance (phase I). The issues were formulated into a long provisional list of questions (phase II). These questions were administered in combination with the EORTC QLQ-C30 to 306 Dutch thyroid cancer survivors to pretest the hypothesized scale structure (phase III). Although the development of this questionnaire was not set up as an international study, phases I-III are in agreement with the methodology of the EORTC guidelines. Results. The literature search, focus group and issue list completed by HCP and survivors resulted in 75 issues. These were reduced to create a 30 item provisional list. Pretesting led to a selection of 24 items with a good range of response. This resulted in the THYCA-QoL containing 24 items and seven conceptual scales. Conclusion. The THYCA-QoL in combination with the EORTC QLQ-C30 is ready for a large (international) scale validation study, and will assess HRQoL issues of most relevance and concern for thyroid cancer survivors.</abstract><cop>England</cop><pub>Informa Healthcare</pub><pmid>23013266</pmid><doi>10.3109/0284186X.2012.718445</doi><tpages>8</tpages></addata></record> |
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| source | MEDLINE; Access via Taylor & Francis; EZB-FREE-00999 freely available EZB journals; Alma/SFX Local Collection |
| subjects | Adult Aged Female Health Status Humans Male Middle Aged Quality of Life - psychology Surveys and Questionnaires Survivors - psychology Survivors - statistics & numerical data Thyroid Neoplasms - complications Thyroid Neoplasms - mortality Thyroid Neoplasms - psychology Thyroid Neoplasms - rehabilitation Young Adult |
| title | Development of a disease-specific health-related quality of life questionnaire (THYCA-QoL) for thyroid cancer survivors |
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