What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer Rosenberg,AR, Dussel,V, Orellana,L, Kang,T, Geyer,JR, Feudtner,C and Wolfe,J 2014, What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer, Journal of Palliative Medicine, vol. 17, no. 8, pp. 953-956, doi: 10.1089/jpm.2013.0663. Attached Files Name Description MIMEType Size Downloads orellana-whatsmissing-2014.pdf Published version application/pdf 172.20KB 175 Title What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer Author(s) Rosenberg,AR Dussel,V Orellana,L orcid.org/0000-0003-3736-4337 Kang,T Geyer,JR Feudtner,C Wolfe,J Journal name Journal of Palliative Medicine Volume number 17 Issue number 8 Start page 953 End page 956 Total pages 4 Publisher Mary Ann Liebert Inc. Place of publication New Rochelle, NY Publication date 2014-08-01 ISSN 1096-6218 1557-7740 Summary Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research. © Copyright 2014, Mary Ann Liebert, Inc. 2014. Language eng DOI 10.1089/jpm.2013.0663 Field of Research 111299 Oncology and Carcinogenesis not elsewhere classified Socio Economic Objective 920102 Cancer and Related Disorders HERDC Research category C1.1 Refereed article in a scholarly journal ERA Research output type C Journal article Copyright notice ©2014, Mary Ann Liebert Inc. Free to Read? Yes Persistent URL http://hdl.handle.net/10536/DRO/DU:30069768 Document type: Journal Article Collections: Faculty of Health Open Access Collection Related Links Link Description Connect to Elements publication management system Go to link with your DU access privileges   Connect to published version Go to link with your DU access privileges     Unless expressly stated otherwise, the copyright for items in DRO is owned by the author, with all rights reserved. Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au. Versions Version Filter Type Tue, 17 Feb 2015, 12:51:28 EST Tue, 17 Feb 2015, 13:31:36 EST Wed, 18 Feb 2015, 07:58:54 EST Thu, 19 Feb 2015, 05:06:45 EST Tue, 03 Mar 2015, 09:02:03 EST Tue, 03 Mar 2015, 09:02:36 EST Tue, 03 Mar 2015, 09:03:40 EST Tue, 03 Mar 2015, 09:04:10 EST Tue, 03 Mar 2015, 09:06:59 EST Thu, 05 Mar 2015, 07:27:13 EST Mon, 23 Mar 2015, 08:34:44 EST Tue, 24 Mar 2015, 07:54:17 EST Wed, 07 Sep 2016, 08:25:52 EST Wed, 06 Dec 2017, 06:12:47 EST Fri, 07 Sep 2018, 17:25:18 EST Filtered Full Citation counts:   Cited 7 times in TR Web of Science Cited 7 times in Scopus Search Google Scholar Access Statistics: 561 Abstract Views, 176 File Downloads  -  Detailed Statistics Created: Tue, 17 Feb 2015, 12:51:28 EST