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

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          Abstract

          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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          Most cited references28

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          Patient reported outcome measures in practice.

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            Reliability and validity of the Sedentary Behavior Questionnaire (SBQ) for adults.

            Sedentary behavior is related to obesity, but measures of sedentary behaviors are lacking for adults. The purpose of this study was to examine the reliability and validity of the Sedentary Behavior Questionnaire (SBQ) among overweight adults. Participants were 49 adults for the 2 week test-retest reliability study (67% female, 53% white, mean age = 20) and 401 overweight women (mean age = 41, 61% white) and 441 overweight men (mean age = 44, 81% white) for the validity study. The SBQ consisted of reports of time spent in 9 sedentary behaviors. Outcomes for validity included accelerometer measured inactivity, sitting time (International Physical Activity Questionnaire), and BMI. Intraclass correlation coefficients (ICCs) assessed reliability and partial correlations assessed validity. ICCs were acceptable for all items and the total scale (range = .51-.93). For men, there were significant relationships of SBQ items with IPAQ sitting time and BMI. For women, there were relationships between the SBQ and accelerometer inactivity minutes, IPAQ sitting time, and BMI. The SBQ has acceptable measurement properties for use among overweight adults. Specific measures of sedentary behavior should be included in studies and population surveillance.
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              The effectiveness of tailored feedback and action plans in an intervention addressing multiple health behaviors.

              Examine the effects of three iterative tailored feedback letters addressing smoking; physical activity; and fruit, vegetable, and fat intake, and test the additional effects of providing feedback on action plans. A tailored, print-based intervention was developed and tested in a randomized control trial with a posttest after 9 months. A total of 2827 respondents agreed to participate. They were recruited from a random sample of 35,000 addresses obtained through the Dutch national telephone company. The mean age was 49 years, and 55% were female. Intervention. The experimental group received three printed tailored letters, and the control group received three printed generic letters. Respondents from the experimental group randomly received either a third letter with tailored information or tailored information and action-planning feedback. MEASURES; The questionnaire assessed physical activity; smoking; consumption of fruit, vegetables and fat; motivational determinants; action plans; and demographics. Tailored information resulted in more improvement over time than generic information for the intake of fruit, vegetables, and fat and for physical activity. No differences between the conditions were found for smoking because of high cessation rates in all conditions. Action-planning feedback did not increase the effects. Tailored lifestyle information can be effective for adults in changing nutrition behavior and physical activity.
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                Author and article information

                Contributors
                +31 243610255 , Kristel.vanAnrooij@radboudumc.nl
                hilde.tobi@wur.nl
                t.hilgenkamp@erasmusmc.nl
                Geraline.Leusink@radboudumc.nl
                Jenneken.Naaldenberg@radboudumc.nl
                Journal
                BMC Med Res Methodol
                BMC Med Res Methodol
                BMC Medical Research Methodology
                BioMed Central (London )
                1471-2288
                16 July 2018
                16 July 2018
                2018
                : 18
                : 80
                Affiliations
                [1 ]ISNI 0000 0004 0444 9382, GRID grid.10417.33, Department of Primary and Community Care, , Radboud University Medical Center, ; P.O. Box 9101, route 68, 6500 HB Nijmegen, The Netherlands
                [2 ]ISNI 0000 0001 0791 5666, GRID grid.4818.5, Biometris, Wageningen University, ; Wageningen, The Netherlands
                [3 ]ISNI 000000040459992X, GRID grid.5645.2, Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, ; Rotterdam, The Netherlands
                Author information
                http://orcid.org/0000-0001-5628-7387
                Article
                539
                10.1186/s12874-018-0539-1
                6048750
                30012090
                c350e1ca-8dad-40a7-ab16-f7e185528a1c
                © 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.

                History
                : 7 December 2017
                : 5 July 2018
                Funding
                Funded by: Academic collaboration centre Sterker op eigen benen
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2018

                Medicine
                intellectual disability,self-report,surveys and questionnaires,test-retest reliability,methodology,physical activity,sedentary behaviour,self-reported health,inclusive research

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