http://repub.eur.nl/res/aut/16421/ List of Publications en http://repub.eur.nl/static-eur/img/logo.png http://repub.eur.nl http://repub.eur.nl/res/pub/40103/ 2013-05-01T00:00:00Z Objective: To gain insight into underlying mechanisms of inactive lifestyles among adults with spastic bilateral cerebral palsy (CP) with a focus on aerobic capacity, oxygen consumption, and physical strain during walking at preferred walking speed, as well as fatigue. Design: Cross-sectional. Setting: University hospital. Participants: Adults (N=36), aged 25 to 45 years, with spastic bilateral CP, walking with (n=6) or without (n=30) walking aids. Interventions: Not applicable. Main Outcome Measures: Physical strain during walking was defined as oxygen uptake during walking, expressed as percentage of peak aerobic capacity. Participants with spastic bilateral CP walked their preferred walking speed while oxygen uptake was measured using a portable gas analyzer. Peak aerobic capacity was measured during maximal cycle ergometry. An accelerometry-based activity monitor measured total daily walking time. Regression analyses were performed to assess the relation between aerobic capacity, oxygen uptake, and physical strain of walking on the one hand and total daily walking time on the other hand. Results: Neither aerobic capacity nor oxygen uptake during walking was related to total daily walking time (r2=.29, P=.10 and r2=.27, P=.16, respectively). Physical strain of walking at preferred walking speed was inversely related to total daily walking time (r2=.44, P<.01). Conclusions: Physical strain during walking is moderately related to total daily walking time, implying that people with high physical strain during walking at preferred walking speed likely walk less in daily life. http://repub.eur.nl/res/pub/39375/ 2013-04-01T00:00:00Z Aim: The aim of this study was to describe patterns for gross motor development by level of severity in a Dutch population of individuals with cerebral palsy (CP). Method: This longitudinal study included 423 individuals (260 males, 163 females) with CP. The mean age at baseline was 9 years 6 months (SD 6y 2mo, range 1-22y). The level of severity of CP among participants, according to the Gross Motor Function Classification System (GMFCS), was 50% level I, 13% level II, 14% level III, 13% level IV, and 10% level V. Participants had been assessed up to four times with the Gross Motor Function Measure (GMFM-66) at 1- or 2-year intervals between 2002 and 2009. Data were analysed using non-linear mixed effects modelling. For each GMFCS level, patterns were created by contrasting a stable limit model (SLM) with a peak and decline model (PDM), followed by estimating limits and rates of gross motor development. Results: The SLM showed a better fit for all GMFCS levels than the PDM. Within the SLM, significant differences between GMFCS levels were found for both the limits (higher values for lower GMFCS levels) and the rates (higher values for GMFCS levels I-II vs level IV and for GMFCS levels I-IV vs level V) of gross motor development. Interpretation: The results validate the existence of five distinct patterns for gross motor development by level of severity of CP. http://repub.eur.nl/res/pub/34706/ 2012-04-30T00:00:00Z Purpose: To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden. Methods: In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness. The expanded CSI version, the CarerQoL and open questions were used to analyse caregiving in more depth. In uni and multivariate analyses, associations of objective care characteristics, patient characteristics and caregiver characteristics with burden were explored. Results: Parents indicated substantial burden, but valued giving care as being important and rewarding. Subjective burden was associated with received support, tracheotomy, active coping by the patient and anxiety in patient and parents, together explaining 34%36% of variance. Living situation was not associated with experienced burden. Conclusions: Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood. Implications for Rehabilitation Parents of adult patients with Duchenne Muscular Dystrophy experience substantial subjective caregiver burden, but they also value caregiving as important and rewarding. Level of subjective caregiver burden in parents is associated with support, tracheotomy, active coping by the patient and anxiety both in patients and parents. Subjective caregiver burden might be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping. http://repub.eur.nl/res/pub/31965/ 2012-02-11T00:00:00Z Purpose: To study determinants of romantic relationships and sexual activity of young adults with cerebral palsy (CP), focusing on personal and environmental factors. Method: A cohort study was performed with 74 young adults (46 men; 28 women) aged 20–25 years (SD 1.4) with CP (49% unilateral CP, 76% GMFCS level I, 85% MACS level I). All participants were of normal intelligence. Romantic relationships, sexual activity (outcome measures), personal and environmental factors (associated factors) were assessed. Associations were analyzed using logistic regression analyses. Results: More females than males with CP were in a current romantic relationship. Self-esteem, sexual esteem and feelings of competence regarding self-efficacy contributed positively to having current romantic relationships. A negative parenting style contributed negatively. Age and gross motor functioning explained 20% of the variance in experience with intercourse. In addition, sexual esteem and taking initiative contributed significantly to intercourse experience. Conclusions: For young adults with CP personal factors (20–35% explained variances) seem to contribute more than environmental factors (9–12% explained variances) to current romantic relationships and sexual experiences. We advice parents and professionals to focus on self-efficacy, self-esteem and sexual self-esteem in development of young adults with CP. http://repub.eur.nl/res/pub/34034/ 2011-08-01T00:00:00Z This study assessed physical fitness and its relationships with everyday physical activity (PA) and fatigue in cerebral palsy (CP). Participants were 42 adults with ambulatory bilateral spastic CP (mean age 36.4 ± 5.8 years; 69% males; 81% with good gross motor functioning). Progressive maximal aerobic cycle tests determined VO2peak(L/min). Objective levels of everyday PA were measured with accelerometry and self-reported levels of everyday PA with the Physical Activity Scale for Individuals with Physical Disabilities. Fatigue was assessed with the Fatigue Severity Scale. The average aerobic capacity of adults with CP was 77% of Dutch reference values. Participants were physically active during 124min/day (85% of Dutch reference values), and half experienced fatigue. In women, lower physical fitness was related to lower self-reported levels of PA (Rp=0.61, P=0.03), and in men to higher levels of fatigue (Rp=-0.37, P=0.05). Other relationships were not significant. Results suggest that ambulatory adults with CP have low levels of physical fitness, are less physically active than able-bodied age mates and often experience fatigue. We found little evidence for relationships between the level of physical fitness and everyday PA or fatigue. http://repub.eur.nl/res/pub/25141/ 2011-06-01T00:00:00Z Objective of this study is to describe the problems young adults with Cerebral Palsy (CP) experience in the various stages of the sexual response cycle, and the physical and emotional obstacles they experience with sexuality. In this prospective cohort study 74 young adults (46 men; 28 women) with CP and average intelligence participated, aged 20-24 years. Twenty percent of these young adults with CP experienced anorgasmia, 80% reported physical problems with sex related to CP and 45% emotional inhibition to initiate sexual contact. In 90% of the participants, sexuality had not been discussed during the rehabilitation treatment. Many adolescents reported wanting information about the impact of CP on sexuality and reproduction (35%), about interventions (26%), tools and medicines (16%) and about problems with their partner (14%). Young adults with CP can experience various problems or challenges with sexuality. For preventing sexual difficulties and treating sexual problems, health care professionals need to proactively take the initiative to inform young people with CP about sexuality. http://repub.eur.nl/res/pub/24007/ 2010-11-05T00:00:00Z Background: Persons 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.Methods: We 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.Conclusions: This 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 registration: Dutch Trial Register; NTR1785. http://repub.eur.nl/res/pub/21341/ 2010-10-15T00:00:00Z 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. http://repub.eur.nl/res/pub/27669/ 2010-09-01T00:00:00Z Objectives: To describe the development of romantic relationships and sexual activity of young adults with cerebral palsy (CP), to investigate whether this development is associated with demographic and physical characteristics, and to compare the sexual activity of this group with an age-appropriate Dutch reference population. Design: Prospective longitudinal study with 3 biannual assessments. Setting: Eight rehabilitation centers and departments in the southwestern regions of The Netherlands. Participants: Young adults (N=103; 61 men, 42 women) with CP without cognitive disabilities (age range at first assessment, 1620y; 82% Gross Motor Function Classification System level I or II). Interventions: Not applicable. Main Outcome Measures: Sexual interest, romantic relationships, and sexual activity. Results: We observed a significant increase in dating in young adults with CP during the 4-year period; however, the experience in romantic relationships did not increase largely during this period. Young adults with a lower education level began dating later than those with higher levels. Significantly more women were in current romantic relationships than men. During the 4 years, participants' sexual experience increased significantly for all sexual milestones evaluated. Level of gross motor function was associated significantly with intercourse experience. Compared with an age-appropriate Dutch reference population, young adults with CP participated at a lower level in romantic relationships and sexual activities, but had equal sexual interest at the final assessment. Conclusions: Young ambulatory adults with CP had similar sexual interests and had increasing experiences with romantic relationships and sexual activities during the transition from late adolescence to young adulthood. However, the percentage of young adults with CP in current romantic relationships was low, especially for men. http://repub.eur.nl/res/pub/20331/ 2010-06-01T00:00:00Z Aim: The aim of this study was to describe the peer group activities, romantic relationships, and sexual activity and their interrelations of young adults with cerebral palsy (CP). Method: A cross-sectional study was performed in 87 participants (51 males, 36 females; mean age 20y 4mo, SD 1y 3mo range age 18-22y) without cognitive disabilities. Ninety-four per cent had spastic CP and 49% unilateral CP, while 78% were classified at Gross Motor Function Classification System level I and 84% at Manual Ability Classification System level I. Peer group activities, dating, romantic relationships, and sexual activity were assessed with an interview and questionnaire. Associations were analysed using logistic regression analyses. Results: The study cohort reported having friends and participating in activities with peers; 71% had experience of dating, 23% had a current romantic relationship, and 38% had experience of intercourse. Young adults with CP had less experience in romantic and sexual relationships than an age-appropriate Dutch reference population. Peer group activities and dating favoured development of romantic relationships and sexual activity. Older age was associated with greater sexual activity. Motor functioning, education level, and gender did not correlate with romantic relationships or sexual activity. Interpretation: Being involved in peer group activities and creating a context to arrange dates seems relevant for young adults with CP to develop romantic relationships and sexual activity. http://repub.eur.nl/res/pub/20339/ 2010-06-01T00:00:00Z Objective: To assess participation and health-related quality of life in adults with bilateral spastic cerebral palsy, and explore associations with self-efficacy. Design: Cross-sectional study. Subjects: A sample of 56 adults with bilateral spastic cerebral palsy (mean age 36.4 (standard deviation 5.8) years; 62% male). Methods: Daily activities and social participation (Life Habits 3.0), health-related quality of life (SF-36 Health Survey), demographic and clinical characteristics, and self-efficacy (General Self-Efficacy Scale (GSES-12)) were assessed. Associations were studied using multivariate logistic regression analyses. Results: At least 60% of the sample had difficulties with mobility, recreation and housing, and 44% had difficulty with personal care and employment. They perceived low health-related quality of life for physical functions, but not for mental functions. Corrected for demographic and clinical characteristics, general self-efficacy explained 49% of the variance in outcome on social participation, and the subscale Effort (GSES-12) 32% of the variance for the physical health-related quality of life and 16% of the mental healthrelated quality of life. Conclusion: A significant number of adults with bilateral spastic cerebral palsy encountered difficulties in social participation and had a low perceived health-related quality of life for physical functions. Higher general self-efficacy or a greater willingness to expend effort in achieving behaviour was related to better participation and a higher physical and mental health-related quality of life. http://repub.eur.nl/res/pub/28691/ 2010-04-01T00:00:00Z 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. http://repub.eur.nl/res/pub/24817/ 2009-12-01T00:00:00Z 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. © The Authors. Journal compilation http://repub.eur.nl/res/pub/24272/ 2009-11-01T00:00:00Z Nieuwenhuijsen C, Donkervoort M, Nieuwstraten W, Stam HJ, Roebroeck ME; and the Transition Research Group South West Netherlands. Experienced problems of young adults with cerebral palsy: targets for rehabilitation care. Objective: To determine the problems experienced by young adults with cerebral palsy (CP) and the relationship between those problems and personal and CP-related characteristics. Design: Cross-sectional study. Setting: Rehabilitation centers in the southwest Netherlands. Participants: Young adults (N=87; aged 18-22y) with CP and normal intelligence (roughly corresponding to an intelligence quotient >70, excluding participants who attended schools for those with learning disabilities). Interventions: Not applicable. Main Outcome Measures: We used the Canadian Occupational Performance Measure in a semistructured interview to assess participants for experienced problems. We further categorized experienced problems according to the domains of the International Classification of Functioning, Disability and Health and assessed the relationship between those problems and personal and CP-related characteristics (eg, age, sex, level of gross motor functioning, manual ability, level of education) using appropriate correlation coefficients. Results: Approximately 70% of participants experienced problems in daily life, addressing the areas of self-care (59%), productivity (52%), and leisure activities (37%). More specifically, problems were most prevalent in recreation and leisure (30%), preparing meals (29%), housework (14%), and dressing (14%). Problems in functional mobility, paid or unpaid work, and socialization were considered as most important (represented by the highest mean importance score). Mobility problems were associated with lower levels of gross motor functioning (Spearman ρ=.39), and problems with self-care were associated with lower levels of manual ability (Spearman ρ=.40). Conclusions: Although frequently addressed during pediatric rehabilitation care, problems with mobility and self-care still prevail in young adults with CP. In addition, during the transition into adulthood, young adults with CP may experience problems regarding domestic life and work, which they consider important. http://repub.eur.nl/res/pub/25431/ 2009-10-01T00:00:00Z Objective: To explore the main barriers to and facilitators of physical activity in young adults with childhood-onset physical disabilities. Design: Qualitative study using focus groups. Participants: Sixteen persons (12 men and 4 women) aged 22.4 (standard deviation 3.4) years, of whom 50% were wheelchair-dependent, participated in the study. Eight were diagnosed with myelomeningocele, 4 with cerebral palsy, 2 with acquired brain injury and 2 with rheumatoid arthritis. Methods: Three focus group sessions of 1.5 h were conducted using a semi-structured question route to assess perceived barriers to and facilitators of physical activity. Tape recordings were transcribed verbatim and content analysed. According to the Physical Activity for People with a Physical Disability model, barriers and facilitators were subdivided into personal factors and environmental factors. Results: Participants reported several barriers related to attitude and motivation. In addition, lack of energy, existing injury or fear of developing injuries or complications, limited physical activity facilities, and lack of information and knowledge, appeared to be barriers to physical activity. Fun and social contacts were mentioned as facilitators of engaging in physical activity, as well as improved health and fitness. Conclusion: Young adults with childhood-onset physical disabilities perceived various personal and environmental factors as barriers to or facilitators of physical activity. These should be taken into account when developing interventions to promote physical activity in this population. http://repub.eur.nl/res/pub/27184/ 2009-07-30T00:00:00Z This paper aimed to discuss functioning, quality of life, (QoL) and lifespan care issues of adolescents and young adults with childhood-onset physical disability from a clinical, scientific, and personal perspective. We present a résuméof results of recently performed studies in rehabilitation-based samples of (young) adults with childhood-onset conditions such as cerebral palsy (CP) and spina bifida (SB), and different models of transition and lifespan care. The studies showed that many young adults with a childhood-onset disability experience health-related problems such as functional deterioration, pain or fatigue, and an inactive lifestyle. A significant number are restricted in participation in work, housing, and intimate relationships. They perceive a lower health-related and global QoL compared with a reference group. In some centres in the UK and the Netherlands specialized outpatient services are available or being developed. In conclusion, transition to adulthood is a critical phase for reaching autonomous participation in adult life. There is an international challenge to incorporate a lifespan perspective in paediatric, transition, and adult health care services for persons with a childhood-onset disability. http://repub.eur.nl/res/pub/16091/ 2009-04-01T00:00:00Z Objective: To determine the prevalence of motor impairments and activity limitations and their inter-relationships in Dutch children with spastic cerebral palsy. Patients and methods: In a population-based survey 119 children, age range 6-19 years, with spastic cerebral palsy were examined. Anthropometry, muscle tone, abnormal posture, joint range of motion, major orthopaedic impairments and gross motor functioning and manual ability were assessed or classified, in addition to limitations in mobility and self-care activities. Spearman's correlation coefficients, bivariate post hoc analyses and univariate and multivariate logistic regression analyses were used. Results: Children with spastic cerebral palsy had a lower body height and weight compared with typically developing peers. Forty percent had no range of motion deficits. Hip dislocations were rarely encountered. Motor impairments were associated with gross motor functioning and manual ability levels. Close to sixty-five percent walked independently. Children with diplegia and tetraplegia differed in activity limitations. Motor impairments and limitations in mobility and self-care activities were only modestly related in multivariate analyses. Conclusion: Distribution of cerebral palsy-related characteristics is consistent with that found in representative studies of other countries. The distinction between diplegia and tetraplegia is relevant from an activity point of view. The child's activity limitations are not a mirror of the motor impairments, which suggests multifactorial influences. An activity-oriented rehabilitation approach goes beyond treating specific impairments. http://repub.eur.nl/res/pub/17693/ 2009-04-01T00:00:00Z The aims of this study are to evaluate the (1) functioning of the children with upper limb reduction deficiency (ULRD) in our centers using the prosthetic upper extremity functional index (PUFI); (2) use of the PUFI as a standardized procedure in the assessment and monitoring of children with ULRD on an individual and a group level and as a follow-up instrument in users and nonusers; and (3) use of the Prosthetic Activities Score (PAS), a score for users in which only those activities for which the prosthesis is actually used are scored. The prospective study was performed in two outpatient clinics of rehabilitation medicine and the subjects included forty children with ULRD aged 4-18 years. The subjects were included from the outpatient clinics of the Erasmus University Medical Centre and the University Medical Centre Groningen; 23 were prosthetic users and 17 were nonusers. Main outcome measures included sum scores (0-100) for ease of performance with and without prosthesis and usefulness of the prosthesis, plus the PAS. Two scales of the PUFI were used in nonusers. The feasibility of the PUFI for patient monitoring and clinical research is evaluated. Children with ULRD perform well on daily activities with and without prosthesis, and both users and nonusers can do almost all activities. Users find prosthesis use in half of the activities beneficial. The PAS score is useful to get more valid scores on the actual ease of performance with the prosthesis and its usefulness. Younger children (<12 years) use their prosthesis more actively than older children (>12 years; 31% vs. 11%). In follow-up measurements, children tended to improve on ease of performance and perceived usefulness. Changes in individual scores seem to correlate with clinical observations. Both children, with and without prosthesis, function well. This is in accordance with our approach that not all children need to have prostheses. Standardized assessment of functional activities in children with ULRD using the PUFI is useful for clinical judgment and adequate goal setting, and for patient monitoring. Recommendations to improve the use of the PUFI include an adaptation of the PUFI scores (PAS) and a version for nonusers. In our opinion, broad (inter)national use of the PUFI will give the necessary feedback on the interpretation of PUFI results. http://repub.eur.nl/res/pub/16090/ 2009-04-01T00:00:00Z Objective: To quantify the level of everyday physical activity in adults with bilateral spastic cerebral palsy, and to study associations with personal and cerebral palsy-related characteristics. Participants and methods: Fifty-six adults with bilateral spastic cerebral palsy (mean age 36.4 (standard deviation (SD) 5.8) years, 62% male) participated in the study. Approximately 75% had high gross motor functioning. Level of everyday physical activity was measured with an accelerometry-based Activity Monitor and was characterized by: (i) duration of dynamic activities (composite measure, percentage of 24 h); (ii) intensity of activity (motility, in gravitational acceleration (g)); and (iii) number of periods of continuous dynamic activity. Outcomes in adults with cerebral palsy were compared with those for able-bodied age-mates. Results: Duration of dynamic activities was 8.1 (SD 3.7) % (116 min per day), and intensity of activity was 0.020 (SD 0.007) g; both outcomes were significantly lower compared with able-bodied age-mates. Of adults with cerebral palsy, 39% had at least one period of continuous dynamic activities lasting longer than 10 min per day. Gross motor functioning was significantly associated with level of everyday physical activity (Rs -0.34 to -0.48; p≤0.01). Conclusion: Adults with bilateral spastic cerebral palsy, especially those with low-level gross motor functioning, are at risk for an inactive lifestyle. http://repub.eur.nl/res/pub/25101/ 2009-01-01T00:00:00Z 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. © The Authors. Journal compilation http://repub.eur.nl/res/pub/14280/ 2008-11-01T00:00:00Z Background: The effects of treatment of children with longitudinal radial deficiency are generally evaluated by measuring grip and pinch strength and joint mobility. Insight into limitations of activities of children with radial deficiency is scarce. In this study, we used standardized instruments to assess impairments in hand function and activity limitations and explored the relationship between the two. Methods: We evaluated the hand function of twenty children with radial deficiency who were between four and twelve years of age. Impairments in hand function were assessed by measuring grip and pinch strength and the active range of motion of the wrist and of the metacarpophalangeal and proximal interphalangeal joints of the second digit. Functional activities were assessed with use of the Assisting Hand Assessment (AHA), to measure the effectiveness of the affected hand, and the Prosthetic Upper Extremity Functional Index (PUFI), to evaluate the ease of activity performance. The relationship between hand function and activity performance and the relationship of those measures with the type of radial deficiency were determined. Results: The average grip and pinch strengths were 36% and 30% of reference values. We found reductions in the active range of motion, particularly of the metacarpophalangeal and proximal interphalangeal joints. The mean AHA score was 85.5 points and the mean PUFI score was 81.8 points, with both measured on a 0 to 100-point scale. Grip and pinch strength, the active range of joint motion, and the sum scores on the two functional tests were related to the type of radial deficiency. Significant relationships were found between impairments in hand function and activity performance. There was a large variation in the activity performance of the children with poor strength, whereas a more linear relationship was found between the active ranges of motion of the wrist and finger joints and activity performance. Conclusions: Despite marked impairments in hand function, children with radial deficiency performed functional activities fairly well. Relationships between impairments in hand function and limitation of activities were not linear. We recommend that evaluations of the results of treatment include assessment of both aspects of hand function. http://repub.eur.nl/res/pub/14421/ 2008-11-01T00:00:00Z Buffart LM, van den Berg-Emons RJ, Burdorf A, Janssen WG, Stam HJ, Roebroeck ME. Cardiovascular disease risk factors and the relationships with physical activity, aerobic fitness, and body fat in adolescents and young adults with myelomeningocele. Objectives: To describe cardiovascular disease (CVD) risk factors in adolescents and young adults with myelomeningocele (MMC) and to explore relationships with physical activity, aerobic fitness, and body fat. Design: Cross-sectional study. Setting: Outpatient clinic. Participants: Adolescents and young adults (N=31) with MMC (58% men) age 16 through 30 years; 13 were ambulatory and 18 were nonambulatory. Interventions: Not applicable. Main Outcome Measures: We studied biologic and lifestyle-related CVD risk factors, including lipid and lipoprotein profiles, blood pressure, aerobic fitness (Vo2peak), body fat, daily physical activity, and smoking behavior. We considered subjects at increased CVD risk when 2 or more of the following risk factors clustered: systolic blood pressure, total serum cholesterol (TC), high-density lipoprotein cholesterol (HDL-C), and cigarette smoking. Relationships were studied using regression analyses. Results: Levels of TC, low-density lipoprotein cholesterol, and triglycerides were elevated in 29%, 38%, and 3% of the participants, respectively. HDL-C was reduced in 19%. Hypertension was found in 20%, and 19% were current cigarette smokers. Based on the clustering of risk factors, 42% of the participants were at increased CVD risk: 15% of ambulatory participants and 61% of nonambulatory participants (P=.03). Adjusted for sex and ambulatory status, participants with higher aerobic fitness tended to be more likely to have no CVD risk (odds ratio=13.0; P=.07). CVD risk was not associated to physical activity and body fat. Conclusions: A large proportion of the study sample was at CVD risk, indicated by clustering of risk factors. Improving aerobic fitness in young adults with MMC may contribute in reducing CVD risk; this needs to be confirmed in future studies. http://repub.eur.nl/res/pub/30004/ 2008-10-10T00:00:00Z Purpose. To gain insight into the unmet needs and utilization of health care of young adults with cerebral palsy (CP) and to explore relations between unmet needs, health care utilization and subject characteristics. Method. A cross-sectional study was performed in 29 young adults with CP without severe learning disabilities (IQ > 70). Subject characteristics such as age, gender, limb distribution, level of gross motor functioning, level of education and perceived participation and autonomy were measured. Outcome measures were the Southampton Needs Assessment Questionnaire, Impact on Participation and Autonomy and a questionnaire on health care utilization. Results. Young adults with CP reported unmet needs mostly on information (79%), mobility (66%) and health care (66%). About half of the participants visited a rehabilitation physician (52%) or a physical therapist (55%) in the past year. Participants with lower levels of gross motor functioning were found to have more unmet needs and visited various health care professionals more often than young adults with higher levels of gross motor functioning. However, participants with higher levels of gross motor functioning still reported several unmet needs. Conclusions. Although young adults with CP frequently receive treatment from health care professionals, they indicate unmet needs with respect to several areas such as information on diagnosis, functional mobility and formal health care. In the treatment of young adults with CP, attention should be paid to these aspects. http://repub.eur.nl/res/pub/14550/ 2008-10-01T00:00:00Z Objective: To assess sports participation in young adults with myelomeningocele and its association with personal, disease-related and psychosocial factors, physical activity and fitness. Design: Cross-sectional study. Subjects: Fifty-one persons (26 males) with myelomeningocele, mean age 21.1 (standard deviation 4.5) years. Methods: We assessed self-reported sports participation, ambulatory status, presence of hydrocephalus, functional independence, social support, perceived competence, exercise enjoyment, objective and self-reported physical activity, peak oxygen uptake, muscle strength and body fat. Associations were studied using regression analyses. Results: Thirty-five subjects (69%) participated in sports. Sports participation was not associated with disease-related characteristics, but was associated with social support from family, perceived athletic competence and physical appearance (p≤0.05), and tended to be associated with global self-worth (p=0.10). Sports participants had higher self-reported physical activity levels than non-participants (p≤0.05); objective results did not support this. Furthermore, sports participants tended to be less likely to have subnormal muscle strength (odds ratio = 0.26; p = 0.08) and their peak oxygen uptake was 0.19 l/ min higher, but not statistically significantly (p=0.13). Conclusion: Sports participation seems to be due to personal preferences rather than physical ability; it could benefit from improving social support and perceived competence, and is associated with higher self-reported physical activity. http://repub.eur.nl/res/pub/15502/ 2008-05-01T00:00:00Z To assess components of health-related physical fitness in adolescents and young adults with myelomeningocele (MMC), and to study relations between aerobic capacity and other health-related physical fitness components. This cross-sectional study included 50 adolescents and young adults with MMC, aged 16–30 years (25 males). Aerobic capacity was quantified by measuring peak oxygen uptake (peakVO2) during a maximal exercise test on a cycle or arm ergometer depending on the main mode of ambulation. Muscle strength of upper and lower extremity muscles was assessed using a hand-held dynamometer. Regarding flexibility, we assessed mobility of hip, knee and ankle joints. Body composition was assessed by measuring thickness of four skin-folds. Relations were studied using linear regression analyses. Average peakVO2 was 1.48 ± 0.52 l/min, 61% of the participants had subnormal muscle strength, 61% had mobility restrictions in at least one joint and average sum of four skin-folds was 74.8 ± 38.8 mm. PeakVO2 was significantly related to gender, ambulatory status and muscle strength, explaining 55% of its variance. Adolescents and young adults with MMC have poor health-related physical fitness. Gender and ambulatory status are important determinants of peakVO2. In addition, we found a small, but significant relationship between peakVO2 and muscle strength. http://repub.eur.nl/res/pub/29907/ 2008-02-22T00:00:00Z Purpose. To assess functional activities of the upper extremity of young adults with cerebral palsy (CP) and to determine their relations with participant characteristics and participation. Method. Assessment of functional activities of the upper extremity was performed on 103 participants (aged 16-20 years) with the Melbourne assessment and the Abilhand Questionnaire. Participation was measured with the Life Habits Questionnaire. Participant characteristics included age, gender, limb distribution of the spastic paresis, educational level and gross and fine motor function. Relations among these variables were studied by means of correlation coefficients and linear regression analysis. Results. Limitations in functional activities of the upper extremity were related to the limb distribution of the spastic paresis and were especially present in quadriplegic participants. Significant correlations between participant characteristics and measures of functional activities were present. Limitations in functional activities of the upper extremity, measured with the Abilhand Questionnaire, were an important determinant for participation, in addition to the gross motor function and educational level. Conclusion. Limitations in functional activities of the upper extremity are an important determinant for restrictions in participation in young adults with CP. It is recommended to include assessment of functional activities of the upper extremity in patients with CP. http://repub.eur.nl/res/pub/32511/ 2008-02-01T00:00:00Z Objective: To describe the social, intimate and sexual relationships of Dutch adolescents with cerebral palsy compared with their able-bodied age mates. Design: Cross-sectional study. Subjects: A total of 103 adolescents with cerebral palsy without severe learning problems aged 16-20 years. Methods: We used a structured interview and questionnaires to assess subject characteristics such as age, type of cerebral palsy, gross motor function and level of education. Main outcome measures on social, intimate and sexual relationships are the Life-Habits questionnaire, the Vineland Adaptive Behaviour Scale, and a structured interview developed for Dutch studies in able-bodied persons and persons with spina bifida. Experienced competence was assessed with the Dutch version of the Self-Perception Profile of Adolescents and the Physical Disability Sexual and Body Esteem Scale. These data were compared with matching reference data, mainly from able-bodied (Dutch) adolescents. Results: Approximately 30% of the subjects functioned socially below their age level. Adolescents with cerebral palsy find it difficult to develop intimate relationships and they have less sexual experience than their able-bodied age mates. Conclusion: Although adolescents with cerebral palsy do have social relationships, it is difficult for them to develop intimate relationships. They perceive various barriers, but seem to have a positive self-perception. © 2007 The Authors. Journal Compilation http://repub.eur.nl/res/pub/32441/ 2008-01-01T00:00:00Z Objective: Comprehensively and objectively assess physical activity, aerobic fitness and body fat in adolescents and young adults with myelomeningocele and to investigate their relationships. Design: Cross-sectional study. Subjects: Fifty-one persons (26 males) with myelomeningocele aged 21.1 (standard deviation) 4.5) years. Methods: Physical activity was measured with an accelerometry-based activity monitor. Aerobic fitness was defined as the maximum oxygen uptake during the last minute of a maximal exercise test. Body fat was assessed using sum of 4 skin-folds and body mass index. Correlations were studied using multiple regression analyses. Results: Thirty-nine percent of the participants were inactive and another 37% were extremely inactive. Aerobic fitness was 42% lower than normative values and 35% were obese. Ambulatory status was related to daily physical activity (β = 0.541), aerobic fitness (β = 0.397) and body fat (β = -0.243). Gender was related to aerobic fitness (β = -0.529) and body fat (β = 0.610). Physical activity was related to aerobic fitness in non-ambulatory persons with myelomeningocele (β = 0.398), but not in ambulatory persons. Conclusion: Adolescents and young adults with myelomeningocele were physically inactive, had poor aerobic fitness and high body fat. Differences exist between subgroups regarding gender and ambulatory status. http://repub.eur.nl/res/pub/37077/ 2007-10-01T00:00:00Z Objective: To obtain better insight into the health issues of young adults with cerebral palsy. Design: Cross-sectional. Subjects: Two data sources were used: 54 adults with cerebral palsy (age range 25-36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine). Methods: Adults with cerebral palsy participated in a physical examination and a semi-structured interview assessing several health issues and utilization of healthcare. Rehabilitation physicians completed a questionnaire on impairments they recognized as being related to cerebral palsy. Results: In the patient sample, pain (59%) and joint deformities (19-57%) were observed most frequently. Evidence of a decrease in the utilization of healthcare services at adult age emerged. Lower gross motor function and cognitive level appeared to be determinants of motor and speech impairments and of the utilization of 3 allied healthcare services. Rehabilitation physicians reported pain (88%), joint deformities (86%) and fatigue (76%) as being cerebral palsy-related health problems in adults. Conclusion: Based on the high prevalence of pain and joint deformities and the decrease in the utilization of healthcare services, systematic follow-up in adults with cerebral palsy seems warranted. Cerebral palsy needs to be considered as a life-long condition, requiring a life-span perspective in order to better organize optimal care. http://repub.eur.nl/res/pub/37079/ 2007-10-01T00:00:00Z 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. http://repub.eur.nl/res/pub/35243/ 2007-09-01T00:00:00Z The aim of this study was to assess the energy cost and physical strain of daily activities in adolescents and young adults with myelomeningocele (MMC) compared with peers without a disability. Eighteen participants with MMC aged between 16 and 30 years (13 males, five females; mean age 21y 4mo [SD 4y 8mo]) and 18 age- and sex-matched non-disabled participants performed several standardized activities. Energy cost was assessed by oxygen uptake expressed per unit time (all activities) and per metre (walking and wheelchair use at preferred speed). Physical strain was calculated by dividing energy cost by aerobic capacity. For all activities no difference was found in energy cost per unit time between ambulatory participants with MMC and comparison participants. Energy cost per metre walking at preferred speed in participants with MMC was 0.26ml/kg/m (SD 0.08), and in comparison participants was 0.20ml/kg/m (SD 0.03); p = 0.08. Non-ambulatory participants with MMC had lower energy cost (per unit time and per metre) during wheelchair use than comparison participants during walking (p < 0.05). For most activities, physical strain was 1.4 to 2 times higher in participants with MMC than in comparison participants (p < 0.05). In conclusion, energy cost per unit time of daily activities was not increased in participants with MMC. However, energy cost per metre during walking at preferred speed and physical strain were higher than in peers without disability. http://repub.eur.nl/res/pub/36413/ 2007-08-03T00:00:00Z Purpose. To describe the level of functioning of adolescents and young adults with cerebral palsy (CP) and study determinants of their level of functioning. Method. In the CP Transition study, adolescents and young adults aged 16-20 years, diagnosed with CP without severe learning disabilities (n=103) participated. In this group we assessed subject characteristics, i.e., age, type of CP, gross motor function (GMFCS), level of education as well as outcome measures on functioning in daily activities and social participation (Life Habits questionnaire, Vineland Adaptive Behavior Scale, Functional Independence Measure). Multivariate regression analyses were performed. Results. About 20-30% of the participants encountered restrictions in daily activities (mobility, self-care, nutrition) and social participation (taking responsibility, community living, leisure activities and employment). The GMFCS level, level of education, and age proved to be important determinants of functioning in daily activities and social participation, explaining 70% and 66% of the variance in outcome respectively. Conclusion. A significant number of adolescents and young adults with CP without severe learning disabilities are restricted in daily activities and social participation. These problems are mainly attributable to restricted gross motor functioning, a low level of education and younger age. http://repub.eur.nl/res/pub/37090/ 2007-05-01T00:00:00Z Objective: To assess upper extremity functioning of children with unilateral transverse upper limb reduction deficiency, using standardized instruments, and to investigate their validity and reliability. Design: Cross-sectional study. Subjects: Twenty subjects aged 4-12 years; 9 prosthetic users and 11 non-users. Methods: The Assisting Hand Assessment, Unilateral Below Elbow Test, Prosthetic Upper extremity Functional Index and ABILHAND-Kids were assessed in all children. Users were tested with and without their prosthesis. We compared results of users and non-users, and of users with and without their prosthesis. Validity was determined by testing hypotheses and correlations with other measures. Test-retest reliability was assessed from repeated measurements in 10 children. Results: Children with an upper limb reduction deficiency performed well on daily activities. They could use their prosthesis in 68% of the activities, but were currently using it in only 30%. Children find their prosthesis useful for specific activities, rather than for daily activities in general. The Assisting Hand Assessment and Prosthetic Upper extremity Functional Index showed best validity; test-retest reliability was good to excellent. Conclusion: The use of standardized instruments adds relevant information on functioning of children with ah upper limb reduction deficiency. We found additional support for validity and reliability of, in particular, the Assisting Hand Assessment and Prosthetic Upper extremity Functional Index. http://repub.eur.nl/res/pub/36107/ 2007-04-01T00:00:00Z Purpose: For treatment evaluation of children with radius deficiencies (RDs), standardized assessment of hand function in performing activities is required. Instruments to measure hand function have been developed for other diagnoses. The current study aimed to find additional evidence for validity, reliability, and usefulness of these instruments for children with RDs. Methods: In this study, 20 children with RDs (aged 4-12 years) participated; 16 were boys, and 13 children were unilaterally affected. Children were assessed using the Assisting Hand Assessment, the Unilateral Below Elbow Test, the Prosthetic Upper Extremity Functional Index, and ABILHAND-Kids. Construct and convergent validity of the instruments were studied focusing on predefined hypotheses and relationships with other instruments and the therapist's global assessment. Test-retest reliability was assessed in 10 children by means of the intraclass correlation coefficients and the smallest detectable differences. Results: For children with RDs, the Assisting Hand Assessment and the Prosthetic Upper Extremity Functional Index appeared to be the most valid function test and questionnaire according to the relationships found with type of RD, functional hand grips, and the therapist's global assessment of hand function. Regarding test-retest reliability, intraclass correlation coefficients ranged from 0.82 to 0.91, and smallest detectable differences were acceptably small. Conclusions: The current results contribute to the evidence that the instruments, especially the Assisting Hand Assessment and the Prosthetic Upper Extremity Functional Index, provide valid and reliable results in children with RDs. Type of study/level of evidence: Diagnostic I.