Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.

<h4>Background</h4>Health related quality of life (HRQL) assessments during therapy for pediatric cancer are important. The objective of this study was to describe reasons for failure to provide HRQL assessments during a pediatric acute myeloid leukemia (AML) clinical trial.<h4>Met...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Donna L Johnston, Rajaram Nagarajan, Mae Caparas, Fiona Schulte, Patricia Cullen, Richard Aplenc, Lillian Sung
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2013
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/d191dbffc6094f1e9ec3f186b8de9d18
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:d191dbffc6094f1e9ec3f186b8de9d18
record_format	dspace
spelling	oai:doaj.org-article:d191dbffc6094f1e9ec3f186b8de9d182021-11-18T08:56:27ZReasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.1932-620310.1371/journal.pone.0074549https://doaj.org/article/d191dbffc6094f1e9ec3f186b8de9d182013-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/pmid/24040278/?tool=EBIhttps://doaj.org/toc/1932-6203<h4>Background</h4>Health related quality of life (HRQL) assessments during therapy for pediatric cancer are important. The objective of this study was to describe reasons for failure to provide HRQL assessments during a pediatric acute myeloid leukemia (AML) clinical trial.<h4>Methods</h4>We focused on HRQL assessments embedded in a multicenter pediatric AML clinical trial. The PedsQL 4.0 Generic Core Scales, PedsQL 3.0 Acute Cancer Module, PedsQL Multidimensional Fatigue Scale, and Pediatric Inventory for Parents were obtained from parent/guardian respondents at a maximum of six time points. Children provided self-report optionally. A central study coordinator contacted sites with delinquent HRQL data. Reasons for failure to submit the HRQL assessments were evaluated by three pediatric oncologists and themes were generated using thematic analysis.<h4>Results</h4>There were 906 completed and 1091 potential assessments included in this analysis (83%). The median age of included children was 12.9 years (range 2.0 to 18.9). The five themes for non-completion were: patient too ill; passive or active refusal by respondent; developmental delay; logistical challenges; and poor knowledge of study processes from both the respondent and institutional perspective.<h4>Conclusions</h4>We identified reasons for non-completion of HRQL assessments during active therapy. This information will facilitate recommendations to improve study processes and future HRQL study designs to maximize response rates.Donna L JohnstonRajaram NagarajanMae CaparasFiona SchultePatricia CullenRichard AplencLillian SungPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 8, Iss 9, p e74549 (2013)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Donna L Johnston Rajaram Nagarajan Mae Caparas Fiona Schulte Patricia Cullen Richard Aplenc Lillian Sung Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
description	<h4>Background</h4>Health related quality of life (HRQL) assessments during therapy for pediatric cancer are important. The objective of this study was to describe reasons for failure to provide HRQL assessments during a pediatric acute myeloid leukemia (AML) clinical trial.<h4>Methods</h4>We focused on HRQL assessments embedded in a multicenter pediatric AML clinical trial. The PedsQL 4.0 Generic Core Scales, PedsQL 3.0 Acute Cancer Module, PedsQL Multidimensional Fatigue Scale, and Pediatric Inventory for Parents were obtained from parent/guardian respondents at a maximum of six time points. Children provided self-report optionally. A central study coordinator contacted sites with delinquent HRQL data. Reasons for failure to submit the HRQL assessments were evaluated by three pediatric oncologists and themes were generated using thematic analysis.<h4>Results</h4>There were 906 completed and 1091 potential assessments included in this analysis (83%). The median age of included children was 12.9 years (range 2.0 to 18.9). The five themes for non-completion were: patient too ill; passive or active refusal by respondent; developmental delay; logistical challenges; and poor knowledge of study processes from both the respondent and institutional perspective.<h4>Conclusions</h4>We identified reasons for non-completion of HRQL assessments during active therapy. This information will facilitate recommendations to improve study processes and future HRQL study designs to maximize response rates.
format	article
author	Donna L Johnston Rajaram Nagarajan Mae Caparas Fiona Schulte Patricia Cullen Richard Aplenc Lillian Sung
author_facet	Donna L Johnston Rajaram Nagarajan Mae Caparas Fiona Schulte Patricia Cullen Richard Aplenc Lillian Sung
author_sort	Donna L Johnston
title	Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
title_short	Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
title_full	Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
title_fullStr	Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
title_full_unstemmed	Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.
title_sort	reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the children's oncology group.
publisher	Public Library of Science (PLoS)
publishDate	2013
url	https://doaj.org/article/d191dbffc6094f1e9ec3f186b8de9d18
work_keys_str_mv	AT donnaljohnston reasonsfornoncompletionofhealthrelatedqualityoflifeevaluationsinpediatricacutemyeloidleukemiaareportfromthechildrensoncologygroup AT rajaramnagarajan reasonsfornoncompletionofhealthrelatedqualityoflifeevaluationsinpediatricacutemyeloidleukemiaareportfromthechildrensoncologygroup AT maecaparas reasonsfornoncompletionofhealthrelatedqualityoflifeevaluationsinpediatricacutemyeloidleukemiaareportfromthechildrensoncologygroup AT fionaschulte reasonsfornoncompletionofhealthrelatedqualityoflifeevaluationsinpediatricacutemyeloidleukemiaareportfromthechildrensoncologygroup AT patriciacullen reasonsfornoncompletionofhealthrelatedqualityoflifeevaluationsinpediatricacutemyeloidleukemiaareportfromthechildrensoncologygroup AT richardaplenc reasonsfornoncompletionofhealthrelatedqualityoflifeevaluationsinpediatricacutemyeloidleukemiaareportfromthechildrensoncologygroup AT lilliansung reasonsfornoncompletionofhealthrelatedqualityoflifeevaluationsinpediatricacutemyeloidleukemiaareportfromthechildrensoncologygroup
_version_	1718421168424222720

Reasons for non-completion of health related quality of life evaluations in pediatric acute myeloid leukemia: a report from the Children's Oncology Group.

Ejemplares similares