Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment
Autor(a) principal: | |
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Data de Publicação: | 2019 |
Outros Autores: | , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10316/107006 https://doi.org/10.1186/s12955-019-1118-9 |
Resumo: | Background: The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated with human growth hormone (hGH). Method: The instrument was administered to children with idiopathic growth hormone Deficiency (IGHD) and small for gestational age (SGA) before and after 12 month of hGH treatment. Children with idiopathic short stature (ISS) served as a reference group receiving no treatment. Psychometric testing included scale distribution characteristics, reliability (internal consistency), criterion-and convergent validity (correlations with the generic KIDSCREEN-Index, inter-correlations among QOLISSY subscales), known-group validity (treatment status, height SDS), and responsiveness analysis (ability to detect change). Results: One hundred fifty-two parents and 66 children/adolescents completed both HRQOL assessments. The QoLISSY demonstrated good reliability with Cronbach’s alpha > .70. Moderate significant correlations between QoLISSY domains and the KIDSCREEN-10 Index supported criterion validity. Statistically significant differences in HRQOL were observed between treatment groups at baseline with children who were about to start treatment reporting a significantly lower HRQOL compared to the children who will not receive treatment. No significant differences were found between the level of short stature based on height SDS scores (≤ −2 SDS, > − 2 SDS). Furthermore, the instrument detected significant changes in HRQOL between the treated and the untreated group in patient-reports. Conclusions: In conclusion, the scales showed satisfactory reliability, adequate validity and ability to detect change in self-reported HRQOL within GH treatment. Findings support QoLISSY’s further use in clinical trials, offering the opportunity to adequately assess HRQOL from the patients’ and caregivers’ perspective to improve patient-centered care. |
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Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatmentHealth-related quality of lifePatient-reported outcomeIdiopathic growth hormone deficiencySmall for gestational ageIdiopathic short statureHuman growth hormone treatmentAdolescentChildDwarfismFemaleGermanyGrowth DisordersHuman Growth HormoneHumansMaleParentsProspective StudiesPsychometricsQuality of LifeReproducibility of ResultsSurveys and QuestionnairesBackground: The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated with human growth hormone (hGH). Method: The instrument was administered to children with idiopathic growth hormone Deficiency (IGHD) and small for gestational age (SGA) before and after 12 month of hGH treatment. Children with idiopathic short stature (ISS) served as a reference group receiving no treatment. Psychometric testing included scale distribution characteristics, reliability (internal consistency), criterion-and convergent validity (correlations with the generic KIDSCREEN-Index, inter-correlations among QOLISSY subscales), known-group validity (treatment status, height SDS), and responsiveness analysis (ability to detect change). Results: One hundred fifty-two parents and 66 children/adolescents completed both HRQOL assessments. The QoLISSY demonstrated good reliability with Cronbach’s alpha > .70. Moderate significant correlations between QoLISSY domains and the KIDSCREEN-10 Index supported criterion validity. Statistically significant differences in HRQOL were observed between treatment groups at baseline with children who were about to start treatment reporting a significantly lower HRQOL compared to the children who will not receive treatment. No significant differences were found between the level of short stature based on height SDS scores (≤ −2 SDS, > − 2 SDS). Furthermore, the instrument detected significant changes in HRQOL between the treated and the untreated group in patient-reports. Conclusions: In conclusion, the scales showed satisfactory reliability, adequate validity and ability to detect change in self-reported HRQOL within GH treatment. Findings support QoLISSY’s further use in clinical trials, offering the opportunity to adequately assess HRQOL from the patients’ and caregivers’ perspective to improve patient-centered care.Springer Nature2019-03-18info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articlehttp://hdl.handle.net/10316/107006http://hdl.handle.net/10316/107006https://doi.org/10.1186/s12955-019-1118-9eng1477-7525Bloemeke, JanikaSilva, NeuzaBullinger, MonikaWitt, StefanieDörr, Helmuth-GüntherQuitmann, Juliainfo:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-05-09T08:36:01Zoai:estudogeral.uc.pt:10316/107006Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T21:23:23.285238Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment |
title |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment |
spellingShingle |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment Bloemeke, Janika Health-related quality of life Patient-reported outcome Idiopathic growth hormone deficiency Small for gestational age Idiopathic short stature Human growth hormone treatment Adolescent Child Dwarfism Female Germany Growth Disorders Human Growth Hormone Humans Male Parents Prospective Studies Psychometrics Quality of Life Reproducibility of Results Surveys and Questionnaires |
title_short |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment |
title_full |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment |
title_fullStr |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment |
title_full_unstemmed |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment |
title_sort |
Psychometric properties of the quality of life in short statured youth (QoLISSY) questionnaire within the course of growth hormone treatment |
author |
Bloemeke, Janika |
author_facet |
Bloemeke, Janika Silva, Neuza Bullinger, Monika Witt, Stefanie Dörr, Helmuth-Günther Quitmann, Julia |
author_role |
author |
author2 |
Silva, Neuza Bullinger, Monika Witt, Stefanie Dörr, Helmuth-Günther Quitmann, Julia |
author2_role |
author author author author author |
dc.contributor.author.fl_str_mv |
Bloemeke, Janika Silva, Neuza Bullinger, Monika Witt, Stefanie Dörr, Helmuth-Günther Quitmann, Julia |
dc.subject.por.fl_str_mv |
Health-related quality of life Patient-reported outcome Idiopathic growth hormone deficiency Small for gestational age Idiopathic short stature Human growth hormone treatment Adolescent Child Dwarfism Female Germany Growth Disorders Human Growth Hormone Humans Male Parents Prospective Studies Psychometrics Quality of Life Reproducibility of Results Surveys and Questionnaires |
topic |
Health-related quality of life Patient-reported outcome Idiopathic growth hormone deficiency Small for gestational age Idiopathic short stature Human growth hormone treatment Adolescent Child Dwarfism Female Germany Growth Disorders Human Growth Hormone Humans Male Parents Prospective Studies Psychometrics Quality of Life Reproducibility of Results Surveys and Questionnaires |
description |
Background: The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated with human growth hormone (hGH). Method: The instrument was administered to children with idiopathic growth hormone Deficiency (IGHD) and small for gestational age (SGA) before and after 12 month of hGH treatment. Children with idiopathic short stature (ISS) served as a reference group receiving no treatment. Psychometric testing included scale distribution characteristics, reliability (internal consistency), criterion-and convergent validity (correlations with the generic KIDSCREEN-Index, inter-correlations among QOLISSY subscales), known-group validity (treatment status, height SDS), and responsiveness analysis (ability to detect change). Results: One hundred fifty-two parents and 66 children/adolescents completed both HRQOL assessments. The QoLISSY demonstrated good reliability with Cronbach’s alpha > .70. Moderate significant correlations between QoLISSY domains and the KIDSCREEN-10 Index supported criterion validity. Statistically significant differences in HRQOL were observed between treatment groups at baseline with children who were about to start treatment reporting a significantly lower HRQOL compared to the children who will not receive treatment. No significant differences were found between the level of short stature based on height SDS scores (≤ −2 SDS, > − 2 SDS). Furthermore, the instrument detected significant changes in HRQOL between the treated and the untreated group in patient-reports. Conclusions: In conclusion, the scales showed satisfactory reliability, adequate validity and ability to detect change in self-reported HRQOL within GH treatment. Findings support QoLISSY’s further use in clinical trials, offering the opportunity to adequately assess HRQOL from the patients’ and caregivers’ perspective to improve patient-centered care. |
publishDate |
2019 |
dc.date.none.fl_str_mv |
2019-03-18 |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10316/107006 http://hdl.handle.net/10316/107006 https://doi.org/10.1186/s12955-019-1118-9 |
url |
http://hdl.handle.net/10316/107006 https://doi.org/10.1186/s12955-019-1118-9 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
1477-7525 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.publisher.none.fl_str_mv |
Springer Nature |
publisher.none.fl_str_mv |
Springer Nature |
dc.source.none.fl_str_mv |
reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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