Introduction<strong>Persons</strong> <strong>with</strong> profound <strong>in</strong>tellectual and multiple disabilities (PIMD) generally have very limitedmobility, always use a wheelchair [1], and often have a Gross Motor Function ClassificationSystem (GMFCS) level of IV or V [2]. Spasticity, dysk<strong>in</strong>esia, or ataxia <strong>with</strong> hypotony frequentlyoccurs <strong>in</strong> <strong>in</strong>dividuals <strong>in</strong> these GMFCS levels [3]. Lance [4] def<strong>in</strong>ed spasticity as “a motor disorder,characterised by a velocity-dependent <strong>in</strong>crease <strong>in</strong> tonic stretch reflexes (muscle tone) <strong>with</strong>exaggerated tendon jerks, result<strong>in</strong>g from hyper-excitability of the stretch reflex as one componentof the upper motor neurone syndrome”. Muscle tonus or muscle tone is “the state of activity ortension of a muscle beyond that related to its <strong>physical</strong> properties, that is, its active resistance tostretch. In skeletal muscle, tonus is dependent upon efferent <strong>in</strong>nervation” [5].<strong>Persons</strong> <strong>with</strong> PIMD are at risk for a variety of limitations <strong>in</strong> daily function<strong>in</strong>g [6], such as<strong>in</strong>activity, unsteady movement, and dim<strong>in</strong>ished <strong>in</strong>itiative. However, research <strong>in</strong>to the quality ofdaily movements of persons <strong>with</strong> PIMD is limited, and related knowledge is scarce. Caregiversof persons <strong>with</strong> PIMD often describe the quality of daily movements <strong>in</strong> terms of flexibility orstiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level ofspasticity.Bohannon and Smith [7] <strong>in</strong>troduced the Modified Ashworth Scale (MAS) as a scale forgrad<strong>in</strong>g spasticity. The MAS is a cl<strong>in</strong>ical measure of muscle tone and a nom<strong>in</strong>al-level measure ofresistance to passive movement [8]. The reliability of the scale appears to be better for measur<strong>in</strong>gmuscle tone of upper limbs [8]. Although one study found the reliability of the MAS to be verygood (kappa was .84 for <strong>in</strong>terrater and .83 for <strong>in</strong>trarater comparisons) [9], other studies found itto be <strong>in</strong>sufficient [10, 11, 12, 13].Haugh, Pandayan, and Johnson [14] suggested that the Modified Tardieu Scale (MTS) isa more appropriate cl<strong>in</strong>ical measure of spasticity than the MAS. The MTS assesses resistanceto passive movement at both slow and fast speeds, and therefore adheres more closely toLance’s def<strong>in</strong>ition of spasticity [4, 14]. Both parameters of the MTS have excellent test-retest and<strong>in</strong>terrater reliability <strong>in</strong> children <strong>with</strong> cerebral palsy [15]. However, as <strong>with</strong> the MAS, other studiesfound the MTS to have <strong>in</strong>sufficient reliability [12, 16, 17].Both the MTS and the MAS show sufficient test-retest and <strong>in</strong>terrater reliability <strong>in</strong> adults<strong>with</strong> <strong>in</strong>tellectual disabilities [18], but the MTS seems to be more feasible and reliable than theMAS. The MTS also shows more reliability than the MAS <strong>in</strong> adults <strong>with</strong> severe bra<strong>in</strong> <strong>in</strong>jury andspasticity [19. Haugh et al. [14] stated that further studies need to be undertaken to clarify thevalidity and reliability of the MTS and the MAS for a variety of muscle groups <strong>in</strong> adult neurologicalpatients. Thus far, no research has been performed to determ<strong>in</strong>e the psychometric properties ofthe MTS and MAS <strong>in</strong> persons <strong>with</strong> PIMD. Therefore, the purpose of this study was to determ<strong>in</strong>ethe feasibility, test-retest reliability, and <strong>in</strong>terrater reliability of the MAS and MTS <strong>in</strong> persons <strong>with</strong>PIMD.MethodsParticipantsWe asked the representatives of 42 persons <strong>with</strong> PIMD for written permission for these personsto participate <strong>in</strong> our study. Forty representatives gave permission. After <strong>in</strong>formed consent wasobta<strong>in</strong>ed, the subjects were screened based on an exam<strong>in</strong>ation by both a special needs physicianand a behavioral scholar. The screen<strong>in</strong>g exclusion criteria were severe psychological problemsChapter 7 | 107
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
- Page 2 and 3:
Measuring physical fitnessin person
- Page 4:
Rijksuniversiteit GroningenMeasurin
- Page 10 and 11:
Chapter 1IntroductionChapter 1 | 9
- Page 12 and 13:
overweight [15]. This prevalence is
- Page 14 and 15:
Theoretical framework of the studyI
- Page 16 and 17:
Components of physical fitnessThe a
- Page 18 and 19:
Therefore, a study is put forward w
- Page 20 and 21:
2002;40:436-444.19 Temple VA, Frey
- Page 22 and 23:
Chapter 2Feasibility and reliabilit
- Page 24 and 25:
IntroductionPhysical fitness and he
- Page 26 and 27:
GMFCS was presented to the investig
- Page 28 and 29:
Body weightTo determine the body we
- Page 30 and 31:
Table 1 Results of Wilcoxon rank te
- Page 32 and 33:
Calculation of heightThe mean (SD)
- Page 34 and 35:
DiscussionThe results of our study
- Page 36 and 37:
References1 Bouchard C, Shepard RJ,
- Page 38 and 39:
37 Rimmer J, Kelly LE, Rosentswieg
- Page 40 and 41:
Chapter 3Measuring waist circumfere
- Page 42 and 43:
IntroductionChildren and adults wit
- Page 44 and 45:
participants. These calculations as
- Page 46 and 47:
Data analysisThe data were analyzed
- Page 48:
Table 2. Simple regression analysis
- Page 54 and 55:
Chapter 4Feasibility and reliabilit
- Page 56 and 57:
IntroductionPeople with intellectua
- Page 58 and 59: Eighty representatives gave permiss
- Page 60 and 61: 3) The measurement procedure: The m
- Page 62 and 63: and whether motivation influenced t
- Page 64 and 65: Table 3. Mean peak heart rate achie
- Page 66 and 67: AcknowledgementsThis research was f
- Page 68 and 69: 21 Hopkins WG, Gaeta H, Thomas AC,
- Page 70 and 71: Chapter 5Psychometric quality of a
- Page 72 and 73: IntroductionIntellectual disability
- Page 74 and 75: Exclusion criteria were mental or p
- Page 76 and 77: participant had fulfilled the task.
- Page 78 and 79: Table 2. Descriptive results peak h
- Page 80 and 81: Table 3. Test-retest reliability of
- Page 82 and 83: Table 4. Correlation scored motivat
- Page 84 and 85: preceding GXT results on HR peak. G
- Page 86 and 87: References1 Schalock R, Brown I, Br
- Page 88 and 89: 37 Stanish HI, Temple VA, Frey GC.
- Page 90 and 91: Chapter 6Feasibility and reliabilit
- Page 92 and 93: IntroductionLocomotor skills in peo
- Page 94 and 95: this study was to evaluate the feas
- Page 96 and 97: obtained from the legal representat
- Page 98 and 99: Modified Berg Balance Scale scoresI
- Page 100 and 101: Modified Berg Balance Scale scoresT
- Page 102 and 103: References1 Van Erkelens-Zwets JHJ
- Page 104 and 105: 39 Dorai-Raj S. Binomial Confidence
- Page 106 and 107: Chapter 7Feasibility, test-retest r
- Page 110 and 111: DesignThe muscle tone and spasticit
- Page 112 and 113: Interrater reliabilityFirstly, to d
- Page 114 and 115: Table 3. Summary of the statistical
- Page 116 and 117: Table 6. Summary of the statistical
- Page 118 and 119: RecommendationsThe feasibility of c
- Page 120 and 121: 18 Gielen EJJM. Is spasticiteit te
- Page 122 and 123: Chapter 8Heart Rate Pattern as an I
- Page 124 and 125: IntroductionIt is important to gain
- Page 126 and 127: 48 persons18 persons lacked permiss
- Page 128 and 129: Furthermore, the mean and the range
- Page 130 and 131: Table 3. Day-to-day outline of the
- Page 132 and 133: Relation between heart rate pattern
- Page 134 and 135: patterns in this study we can concl
- Page 136 and 137: References1 Emerson E. Underweight,
- Page 138 and 139: 38 Multilevel Models Project (2004)
- Page 140 and 141: Chapter 9General DiscussionChapter
- Page 142 and 143: on this. To sum up, testing in pers
- Page 144 and 145: for future research it is recommend
- Page 146 and 147: studies. Randomized Controlled Tria
- Page 148 and 149: of these individuals require more?
- Page 150 and 151: 19 Lahtinen U, Rintala P, Malin A.
- Page 152 and 153: SummarySummary | 151
- Page 154 and 155: problems in both locomotor skills a
- Page 156 and 157: subjects are to be applied to perso
- Page 158 and 159:
may be an indicator of activity lev
- Page 160 and 161:
SamenvattingSamenvatting | 159
- Page 162 and 163:
InleidingVoldoende bewegen en fithe
- Page 164 and 165:
verstandelijk niveau en bepaalde mo
- Page 166 and 167:
Hieruit bleek, dat de motivatie van
- Page 168 and 169:
Verder is duidelijk geworden dat me
- Page 170 and 171:
DankwoordDankwoord | 169
- Page 172 and 173:
De leden van de leescommissie, prof
- Page 174 and 175:
Judith van der Boom, dank je wel vo
- Page 176 and 177:
Dankwoord | 175
- Page 178 and 179:
Curriculum vitaeCurriculum vitae |
- Page 180:
Curriculum vitae | 179