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Measuring physical fitness in Persons with Severe/Profound ...

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or somatic diseases, which were def<strong>in</strong>ed as chronic diseases and/or diseases that do not resolve<strong>in</strong> the short term. Two persons were excluded because they exhibited one of these problemsor diseases. The exclusion criteria at the time the measurements were be<strong>in</strong>g performed weregeneral illness or fever; tak<strong>in</strong>g antibiotics; recently started tak<strong>in</strong>g muscle relaxants; worsen<strong>in</strong>g ofasthma, epilepsy (recent <strong>in</strong>sult or epileptic fits); fresh wound(s)/bruise(s) or other factors caus<strong>in</strong>gpa<strong>in</strong> dur<strong>in</strong>g movement; or stress due to the subject’s behavior just before the measurement date.Three persons were excluded because they exhibited one of these criteria. Figure 1 presents thesampl<strong>in</strong>g scheme of persons <strong>in</strong>cluded <strong>in</strong> the study.42 persons40 persons2 persons lacked permission from representatives2 persons excluded for medical/behavioral reasons38 persons3 persons excluded at the time of the test35 personsFigure 1. Sampl<strong>in</strong>g scheme of subjects <strong>in</strong>cluded <strong>in</strong> the study.The participants <strong>with</strong> PIMD were classified as GMFCS IV or V [2]. Furthermore, the <strong>in</strong>tellectuallevel or <strong>in</strong>telligence quotient (IQ) of each participant was classified accord<strong>in</strong>g to the InternationalClassification of Diseases (ICD-10) of the World Health Organization (WHO) [20]. The presence orabsence of epilepsy was also recorded, because we assumed that seizures greatly affect muscletone. We also classified the visual impairments of the participants accord<strong>in</strong>g to WHO guidel<strong>in</strong>es[21]. F<strong>in</strong>ally, the presence or absence of orthopedic disorders was recorded.Ethical statementThe study was performed <strong>in</strong> agreement <strong>with</strong> the guidel<strong>in</strong>es of the Hels<strong>in</strong>ki Declaration asrevised <strong>in</strong> 1975. Permission to carry out the study was obta<strong>in</strong>ed from the <strong>in</strong>stitutional ethicscommittee. Informed consent was obta<strong>in</strong>ed from legal representatives of the participants,because all participants were unable to give consent. The measurements were performed <strong>in</strong>accordance <strong>with</strong> the guidel<strong>in</strong>es of the Dutch Society for Doctors <strong>in</strong> the Care for people <strong>with</strong> anIntellectual Disability (NVAZ), which are outl<strong>in</strong>ed <strong>in</strong> a code called “Resistance among people<strong>with</strong> an <strong>in</strong>tellectual disability <strong>in</strong> the framework of the Act Govern<strong>in</strong>g Medical-Scientific ResearchInvolv<strong>in</strong>g Humans” [22]. The purpose of this code is to guide doctors <strong>in</strong> assess<strong>in</strong>g resistance <strong>in</strong>persons <strong>with</strong> an <strong>in</strong>tellectual disability. In l<strong>in</strong>e <strong>with</strong> this code, a participant’s consistent distress orunhapp<strong>in</strong>ess was <strong>in</strong>terpreted as a sign of lack of assent, and further participation <strong>in</strong> the study wasreconsidered.108 | Chapter 7

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