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Parents’ information needs and influential factors when making decisions about TNF-α inhibitors

BACKGROUND: Parents struggle when making treatment decisions for children with arthritis or other chronic conditions. Understanding their decision-making process is an essential step towards improving the decision-making experience. The objective of this study was to describe parents’ information ne...

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Autores principales: Lipstein, Ellen A., Lovell, Daniel J., Denson, Lee A., Kim, Sandra C., Spencer, Charles, Britto, Maria T.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024421/
https://www.ncbi.nlm.nih.gov/pubmed/27641835
http://dx.doi.org/10.1186/s12969-016-0113-5
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author Lipstein, Ellen A.
Lovell, Daniel J.
Denson, Lee A.
Kim, Sandra C.
Spencer, Charles
Britto, Maria T.
author_facet Lipstein, Ellen A.
Lovell, Daniel J.
Denson, Lee A.
Kim, Sandra C.
Spencer, Charles
Britto, Maria T.
author_sort Lipstein, Ellen A.
collection PubMed
description BACKGROUND: Parents struggle when making treatment decisions for children with arthritis or other chronic conditions. Understanding their decision-making process is an essential step towards improving the decision-making experience. The objective of this study was to describe parents’ information needs and the influences on their decision making about treatment with TNF-α inhibitors. METHODS: Survey domains were developed based on qualitative data and cognitive interviewing. We mailed the survey to parents of children with juvenile idiopathic arthritis or inflammatory bowel disease who had initiated treatment with TNF-α inhibitors in the prior 2 years. Data were analyzed using descriptive and non-parametric statistics. RESULTS: Survey response rate was 54.9 %. Each item had <2 % missing responses. Parents used an array of information sources when deciding about treatment with TNF-α inhibitors. Resources other than their child’s specialist were most often used to increase confidence in parents’ decisions or because they wanted to know more about other people’s experiences being treated with TNF-α inhibitors, rather than due to a lack of understanding. All but two (cost and route of administration) of the influential decision factors were very or extremely important to the majority of participants with factors related to long-term side effects, treatment efficacy, and disease impact being most important. CONCLUSIONS: This study describes parents’ information needs and influential factors in treatment decision making. Results suggest that future work should be aimed at helping families weigh risks and benefits, such as through decision support interventions, as well as developing opportunities to include people beyond the family and physician in the decision-making process. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12969-016-0113-5) contains supplementary material, which is available to authorized users.
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spelling pubmed-50244212016-09-20 Parents’ information needs and influential factors when making decisions about TNF-α inhibitors Lipstein, Ellen A. Lovell, Daniel J. Denson, Lee A. Kim, Sandra C. Spencer, Charles Britto, Maria T. Pediatr Rheumatol Online J Research Article BACKGROUND: Parents struggle when making treatment decisions for children with arthritis or other chronic conditions. Understanding their decision-making process is an essential step towards improving the decision-making experience. The objective of this study was to describe parents’ information needs and the influences on their decision making about treatment with TNF-α inhibitors. METHODS: Survey domains were developed based on qualitative data and cognitive interviewing. We mailed the survey to parents of children with juvenile idiopathic arthritis or inflammatory bowel disease who had initiated treatment with TNF-α inhibitors in the prior 2 years. Data were analyzed using descriptive and non-parametric statistics. RESULTS: Survey response rate was 54.9 %. Each item had <2 % missing responses. Parents used an array of information sources when deciding about treatment with TNF-α inhibitors. Resources other than their child’s specialist were most often used to increase confidence in parents’ decisions or because they wanted to know more about other people’s experiences being treated with TNF-α inhibitors, rather than due to a lack of understanding. All but two (cost and route of administration) of the influential decision factors were very or extremely important to the majority of participants with factors related to long-term side effects, treatment efficacy, and disease impact being most important. CONCLUSIONS: This study describes parents’ information needs and influential factors in treatment decision making. Results suggest that future work should be aimed at helping families weigh risks and benefits, such as through decision support interventions, as well as developing opportunities to include people beyond the family and physician in the decision-making process. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12969-016-0113-5) contains supplementary material, which is available to authorized users. BioMed Central 2016-09-15 /pmc/articles/PMC5024421/ /pubmed/27641835 http://dx.doi.org/10.1186/s12969-016-0113-5 Text en © The Author(s). 2016 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Lipstein, Ellen A.
Lovell, Daniel J.
Denson, Lee A.
Kim, Sandra C.
Spencer, Charles
Britto, Maria T.
Parents’ information needs and influential factors when making decisions about TNF-α inhibitors
title Parents’ information needs and influential factors when making decisions about TNF-α inhibitors
title_full Parents’ information needs and influential factors when making decisions about TNF-α inhibitors
title_fullStr Parents’ information needs and influential factors when making decisions about TNF-α inhibitors
title_full_unstemmed Parents’ information needs and influential factors when making decisions about TNF-α inhibitors
title_short Parents’ information needs and influential factors when making decisions about TNF-α inhibitors
title_sort parents’ information needs and influential factors when making decisions about tnf-α inhibitors
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024421/
https://www.ncbi.nlm.nih.gov/pubmed/27641835
http://dx.doi.org/10.1186/s12969-016-0113-5
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