Jetty van Meeteren

Test-retest reliability in isokinetic muscle strength measurements of the shoulder

Test-retest reliability is important for long-term follow-up; however, data on the reliability of isokinetic dynamometry of the shoulder are scarce. Twenty subjects (50% male) were measured; 10 with asymmetrical use of the arms (mean age 27 years) and 10 used their arms symmetrically (mean age 32 years). A Biodex dynamometer (Multi joint system 2) was used. Abduction/adduction and external/internal rotation were measured following a standardized protocol. Performed scheme: two sessions with a 2-week interval, all measurements were done with 60 degrees/second (5 repetitions) and respectively 120 degrees/second and 180 degrees/second (10 repetitions). Differences in the mean peak torques, split for muscle group and gender were significant. Intraclass correlation coefficients ranged from 0.69 to 0.92. This implies good to excellent reliability in research on groups. To determine test-retest reliability of two consecutive individual measurements smallest detectable differences (SDD) were computed and ranged from 21% to 43%. It is questionable whether the SDDs are small enough to detect real changes in muscle strength.

Lifestyle, participation, and health-related quality of life in adolescents and young adults with myelomeningocele

This study aimed to describe participation and health‐related quality of life (HRQoL) in adolescents and young adults with myelomeningocele and to explore their relationships with lifestyle‐related factors. Fifty‐one individuals with a mean age of 21 years 1 month (SD 4y 6mo) years participated (26 males, 25 females; 82% hydrocephalus, 55% wheelchair‐dependent). Participation was assessed using the Life Habits Questionnaire, and HRQoL was assessed using the Medical Outcomes Study 36‐item Short‐form Health Survey. Physical activity was measured using an accelerometry‐based activity monitor, fitness (peak oxygen uptake) was measured during a maximal exercise test, and the sum of four skin‐folds was assessed to indicate body fat. Relationships were studied using logistic regression analyses. Of the participants, 63% had difficulties in daily activities and 59% in social roles. Participants perceived lower physical HRQoL than a Dutch reference population. Participants with higher levels of physical activity and fitness had fewer difficulties in participating in daily activities (odds ratio [OR]=8.8, p=0.02 and OR=29.7, p=0.02 respectively) and a higher physical HRQoL (OR=4.8, p=0.02 and OR=30.2, p=0.006 respectively), but not mental HRQoL. Body fat was not related to participation or HRQoL. In conclusion, a large proportion of individuals with myelomeningocele had difficulties in participation and perceived low physical HRQoL. Higher levels of physical activity and fitness were related to fewer difficulties in participation and higher physical HRQoL.

Transition to adulthood: validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence

The aim of this study was to investigate the validity of the Rotterdam Transition Profile (RTP) to describe the transition process from childhood to adulthood in young adults with cerebral palsy (CP). Participants were recruited from rehabilitation centres and hospital departments of rehabilitation. In total, 81 young adults (47 males, 34 females) with CP and normal intelligence participated (mean age 20y 5mo [SD 1y 4mo] range 18−22y; 95% spastic CP, 48% hemiplegia, 38% diplegia, 14% quadriplegia; 78% Gross Motor Function Classification System Level I, 83% Manual Ability Classification System Level I). The RTP and the Assessment of Life Habits questionnaire are used to measure transition and functioning in daily activities and participation. Almost all participants were in the transition process or had reached an independent adult lifestyle (ranging from 60−100%, housing 42%). Compared with able‐bodied peers, young adults with CP lagged behind in their development in housing (25 vs 36%; p<0.05), employment (33 vs 49%; p<0.05), and intimate relationships (37 vs 76%; p<0.01). Associations were found between the phase of transition and age, parents’ level of education, gross motor functioning, manual ability, level of education, and level of functioning in daily activities and participation. The RTP is a valid tool to gain more insight into the transition process, at the individual as well as at group level.

Learn 2 Move 16-24: effectiveness of an intervention to stimulate physical activity and improve physical fitness of adolescents and young adults with spastic cerebral palsy; a randomized controlled trial

BackgroundPersons with cerebral palsy (CP) are at risk for developing an inactive lifestyle and often have poor fitness levels, which may lead to secondary health complications and diminished participation and quality of life. However, persons with CP also tend not to receive structural treatment to improve physical activity and fitness in adolescence, which is precisely the period when adult physical activity patterns are established.MethodsWe aim to include 60 adolescents and young adults (16-24 years) with spastic CP. Participants will be randomly assigned to an intervention group or a control group (no treatment; current policy). The intervention will last 6 months and consist of three parts; 1) counselling on daily physical activity; 2) physical fitness training; and 3) sports advice. To evaluate the effectiveness of the intervention, all participants will be measured before, during, directly after, and at 6 months following the intervention period. Primary outcome measures will be: 1) physical activity level, which will be measured objectively with an accelerometry-based activity monitor during 72 h and subjectively with the Physical Activity Scale for Individuals with Physical Disabilities; 2) aerobic fitness, which will be measured with a maximal ramp test on a bicycle or armcrank ergometer and a 6-minute walking or wheelchair test; 3) neuromuscular fitness, which will be measured with handheld dynamometry; and 4 body composition, which will be determined by measuring body mass, height, waist circumference, fat mass and lipid profile.ConclusionsThis paper outlines the design, methodology and intervention of a multicenter randomized controlled trial (LEARN 2 MOVE 16-24) aimed at examining the effectiveness of an intervention that is intended to permanently increase physical activity levels and improve fitness levels of adolescents and young adults with CP by achieving a behavioral change toward a more active lifestyle.Trial registrationDutch Trial Register; NTR1785

GRIP STRENGTH PARAMETERS AND FUNCTIONAL ACTIVITIES IN YOUNG ADULTS WITH UNILATERAL CEREBRAL PALSY COMPARED WITH HEALTHY SUBJECTS

OBJECTIVE To determine reliability of maximal grip strength, muscle coordination and muscle endurance. To compare these parameters in young adults with unilateral cerebral palsy and healthy subjects. To evaluate the correlation of these variables with functional activities. SUBJECTS Twenty-six healthy subjects and 26 young adults with unilateral cerebral palsy recruited from a cohort study in young adults with cerebral palsy. METHODS Maximal grip strength, muscle coordination and muscle endurance were measured in both hands of all subjects. In the healthy subjects test-retest reliability was established. In the young adults with cerebral palsy, the Melbourne assessment and Abilhand Questionnaire were used to determine functional activities. RESULTS For the dominant and non-dominant hand the intraclass correlation coefficients for the maximal grip strength were 0.93 and 0.91, for the muscle coordination 0.81 and 0.86, and for the muscle endurance 0.59 for both sides. Maximal grip strength of the involved hand of patients was reduced compared with the uninvolved hand and compared with healthy subjects. There was no difference in muscle coordination and muscle endurance between the involved and uninvolved hands. These parameters, however, were significantly reduced in both hands compared with healthy subjects. Correlations between grip strength parameters and activity limitations were relatively weak and non-linear. CONCLUSION Performance of activity is not directly related to grip strength parameters. The uninvolved hand of young adults with unilateral cerebral palsy also has impaired function.

The effectiveness of aerobic training, cognitive behavioural therapy, and energy conservation management in treating MS-related fatigue: the design of the TREFAMS-ACE programme

BackgroundTREFAMS is an acronym for TReating FAtigue in Multiple Sclerosis, while ACE refers to the rehabilitation treatment methods under study, that is, Aerobic training, Cognitive behavioural therapy, and Energy conservation management. The TREFAMS-ACE research programme consists of four studies and has two main objectives: (1) to assess the effectiveness of three different rehabilitation treatment strategies in reducing fatigue and improving societal participation in patients with MS; and (2) to study the neurobiological mechanisms of action that underlie treatment effects and MS-related fatigue in general.Methods/DesignAmbulatory patients (n = 270) suffering from MS-related fatigue will be recruited to three single-blinded randomised clinical trials (RCTs). In each RCT, 90 patients will be randomly allocated to the trial-specific intervention or to a low-intensity intervention that is the same for all RCTs. This low-intensity intervention consists of three individual consultations with a specialised MS-nurse. The trial-specific interventions are Aerobic Training, Cognitive Behavioural Therapy, and Energy Conservation Management. These interventions consist of 12 individual therapist-supervised sessions with additional intervention-specific home exercises. The therapy period lasts 16 weeks. All RCTs have the same design and the same primary outcome measures: fatigue - measured with the Checklist Individual Strength, and participation - measured with the Impact on Participation and Autonomy questionnaire. Outcomes will be assessed 1 week prior to, and at 0, 8, 16, 26 and 52 weeks after randomisation. The assessors will be blinded to allocation. Pro- and anti-inflammatory cytokines in serum, salivary cortisol, physical fitness, physical activity, coping, self-efficacy, illness cognitions and other determinants will be longitudinally measured in order to study the neurobiological mechanisms of action.DiscussionThe TREFAMS-ACE programme is unique in its aim to assess the effectiveness of three rehabilitation treatments. The programme will provide important insights regarding the most effective treatment for MS-related fatigue and the mechanisms that underlie treatment response. A major strength of the programme is that the design involves three almost identical RCTs, enabling a close comparison of the treatment strategies and a strong overall meta-analysis. The results will also support clinical practice guidelines for the treatment of MS-related fatigue.Trial registrationsCurrent Controlled Trials ISRCTN69520623, ISRCTN58583714, and ISRCTN82353628

Using the manual ability classification system in young adults with cerebral palsy and normal intelligence.

Purpose. The study aimed to establish whether the manual ability classification system (MACS), a valid classification system for manual ability in children with cerebral palsy (CP), is applicable in young adults with CP and normal intelligence. Subjects. The participants (n = 83) were young adults with CP and normal intelligence and had a mean age of 19.9 years. Method. In this study, inter observer reliability of the MACS was determined. We investigated relationships between the MACS level and patient characteristics (such as the gross motor function classification system (GMFCS) level, limb distribution of the spastic paresis and educational level) and with functional activities of the upper extremity (assessed with the Melbourne assessment, the Abilhand questionnaire and the domain self-care of the functional independence measure (FIM)). Furthermore, with a linear regression analysis it was determined whether the MACS is a significant determinant of activity limitations and participation restrictions. Results. The reliability was good (intraclass correlation coefficient 0.83). The Spearman correlation coefficients with GMFCS level, limb distribution of the spastic paresis and educational level were 0.53, 0.46, and 0.26, respectively. MACS level correlated moderately with outcome measures of functional activities (correlations ranging from −0.38 to −0.55). MACS level is, in addition to the GMFCS level, an important determinant for limitations in activities and restrictions in participation. Conclusion. We conclude that the MACS is a feasible method to classify manual ability in young adults with CP and normal intelligence with a good manual ability.

Promoting physical activity in an adolescent and a young adult with physical disabilities

BACKGROUND We sought to describe the design of the Active Lifestyle and Sports Participation (ALSP) intervention for adolescents and young adults with physical disabilities, and to present the first 2 cases. METHODS A 17-year-old boy with myelomeningocele and hydrocephalus and a 23-year-old woman with unilateral cerebral palsy were enrolled into the ALSP intervention, a personalized intervention designed to improve physical activity and fitness levels. Main outcome measures were self-reported physical activity and aerobic fitness. Fitness was determined by submaximal 6-minute walk or wheel test and by maximal cycle or arm ergometer-exercise test. Participants rated satisfaction with the intervention on a Likert-type numeric scale from 1 to 10. RESULTS Improvements in self-reported physical activity were 51% and 75% for the male and female participant, respectively. Respective improvements in submaximal exercise were 16% and 9%. Maximal exercise increased 39% in the male participant but did not increase in the female participant. Satisfaction with the intervention was rated moderate-good to excellent. CONCLUSION Data for the first 2 cases suggested that ALSP intervention seemed feasible to offer in an outpatient rehabilitation department, and the effectiveness may be promising. Future studies should determine the short- and long-term effectiveness of the intervention.

Long-Term Trajectories of Health-Related Quality of Life in Individuals With Cerebral Palsy: A Multicenter Longitudinal Study

OBJECTIVES To (1) determine the long-term trajectory of health-related quality of life (HRQOL) for the dimensions of physical complaints and motor, psychological, and social functioning for groups of individuals with cerebral palsy (CP) aged 1 to 24 years; (2) assess the variability in HRQOL within individuals with CP over time; (3) assess the variability in HRQOL between individuals with CP; and (4) compare the HRQOL in individuals with CP to reference data of typically developing individuals. DESIGN Multicenter prospective longitudinal study. SETTING Rehabilitation departments of 3 university medical centers and various rehabilitation centers in The Netherlands. PARTICIPANTS Dutch individuals with CP (N=424; age, 1-24y). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The HRQOL dimensions of physical complaints and motor, psychological, and social functioning. Each individual visited the rehabilitation department for 3 or 4 measurements. The time between measurements was 1 or 2 years. RESULTS Individuals with CP experience an HRQOL that, on average, remains fairly stable over time. Variability in HRQOL within individuals with CP was similar to that within typically developing individuals. Variability between individuals with CP could be explained by type of CP (motor functioning), Gross Motor Function Classification System level (physical complaints and motor and social functioning), and intellectual disability (physical complaints and social functioning). Finally, individuals with CP experienced a lower HRQOL than did typically developing individuals, especially for the dimensions of motor and social functioning. CONCLUSIONS Many changes take place in the psychosocial development of the individual with CP, which accordingly change their expectations and those of their caregivers, peers, and professionals. As a result, perceived physical complaints and motor, psychological, and social functioning remain fairly stable over many years.

Effectiveness of energy conservation management on fatigue and participation in multiple sclerosis: A randomized controlled trial:

Background: Fatigue is a frequently reported and disabling symptom in multiple sclerosis (MS). Objective: To investigate the effectiveness of an individual energy conservation management (ECM) intervention on fatigue and participation in persons with primary MS-related fatigue. Methods: A total of 86 severely fatigued and ambulatory adults with a definite diagnosis of MS were randomized in a single-blind, two-parallel-arm randomized clinical trial to the ECM group or the information-only control group in outpatient rehabilitation departments. Blinded assessments were carried out at baseline and at 8, 16, 26 and 52 weeks after randomization. Primary outcomes were fatigue (fatigue subscale of Checklist Individual Strength – CIS20r) and participation (Impact on Participation and Autonomy scale – IPA). Results: Modified intention-to-treat analysis was based on 76 randomized patients (ECM, n = 36; MS nurse, n=40). No significant ECM effects were found for fatigue (overall difference CIS20r between the groups = −0.81; 95% confidence interval (CI), −3.71 to 2.11) or for four out of five IPA domains. An overall unfavourable effect was found in the ECM group for the IPA domain social relations (difference between the groups = 0.19; 95% CI, 0.03 to 0.35). Conclusion: The individual ECM format used in this study did not reduce MS-related fatigue and restrictions in participation more than an information-only control condition.