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Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability

BACKGROUND: The lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores poss...

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Autores principales: Vlot-van Anrooij, Kristel, Tobi, Hilde, Hilgenkamp, Thessa I. M., Leusink, Geraline L., Naaldenberg, Jenneken
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048750/
https://www.ncbi.nlm.nih.gov/pubmed/30012090
http://dx.doi.org/10.1186/s12874-018-0539-1
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author Vlot-van Anrooij, Kristel
Tobi, Hilde
Hilgenkamp, Thessa I. M.
Leusink, Geraline L.
Naaldenberg, Jenneken
author_facet Vlot-van Anrooij, Kristel
Tobi, Hilde
Hilgenkamp, Thessa I. M.
Leusink, Geraline L.
Naaldenberg, Jenneken
author_sort Vlot-van Anrooij, Kristel
collection PubMed
description BACKGROUND: The lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales. METHODS: In an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations. RESULTS: Main adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well. CONCLUSIONS: This study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study’s results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID.
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spelling pubmed-60487502018-07-19 Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability Vlot-van Anrooij, Kristel Tobi, Hilde Hilgenkamp, Thessa I. M. Leusink, Geraline L. Naaldenberg, Jenneken BMC Med Res Methodol Research Article BACKGROUND: The lack of suitable and reliable scales to measure self-reported health and health behaviour among people with intellectual disabilities (ID) is an important methodological challenge in health research. This study, which was undertaken together with co-researchers with ID, explores possibilities for self-reported health scales by adjusting, testing, and reflecting on three self-reported health scales. METHODS: In an inclusive process, the researchers and co-researchers with ID adjusted the SBQ (sedentary behaviour), SQUASH (physical activity), and SRH (self-reported health) scales, after which a test-retest study among adults with ID was performed. Test outcomes were analysed on suitability and test-retest reliability, and discussed with the co-researchers with ID to reflect on outcomes and to make further recommendations. RESULTS: Main adjustments made to the scales included: use easy words, short sentences, and easy answer formats. Suitability (N = 40) and test-retest reliability (N = 15) was higher for the adjusted SQUASH (SQUASH-ID), in which less precise time-based judgements are sought, than in the adjusted SBQ (SBQ-ID). Suitability and test-retest reliability were fair to moderate for the SRH-ID and CHS-ID. The main outcome from the reflection was the recommendation to use SQUASH-ID answer options, in which less precise time-based judgements were sought, in the SBQ-ID as well. CONCLUSIONS: This study served as a pilot of an inclusive process in which people with ID collaborated in adjusting, testing, and reflecting on self-reported health scales. Although the adjusted self-reported measurements may be reliable and suitable to the target group, the adjustments needed may impair measurement precision. This study’s results contribute to informed decision making on the adaptation and use of self-reported health scales for people with ID. BioMed Central 2018-07-16 /pmc/articles/PMC6048750/ /pubmed/30012090 http://dx.doi.org/10.1186/s12874-018-0539-1 Text en © The Author(s). 2018 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
Vlot-van Anrooij, Kristel
Tobi, Hilde
Hilgenkamp, Thessa I. M.
Leusink, Geraline L.
Naaldenberg, Jenneken
Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability
title Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability
title_full Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability
title_fullStr Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability
title_full_unstemmed Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability
title_short Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability
title_sort self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6048750/
https://www.ncbi.nlm.nih.gov/pubmed/30012090
http://dx.doi.org/10.1186/s12874-018-0539-1
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