Wilma van der Slot

Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy

Aim  To investigate the prevalence and co‐occurrence of chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy (SBCP) and explore associations of chronic pain and fatigue with depressive symptoms and daily functioning.

Everyday physical activity and community participation of adults with hemiplegic cerebral palsy.

Purpose. To assess the level and potential determinants of everyday physical activity and participation in various life areas of adults with hemiplegic cerebral palsy (CP) in comparison with healthy subjects. Method. In a cross-sectional study everyday physical activity was measured (Activity Monitor) in 16 adults with CP, aged 28 (3) years, and 16 age/gender matched healthy volunteers, aged 29 (3) years. Participation was assessed by means of validated questionnaires. Age, gender, body fat (skinfold thickness), muscle tone (Ashworth Scale), functional level and participation were assessed as potential determinants of everyday physical activity. Results. In adults with CP mean (SD) duration of dynamic activities during a day (10.6 [3.5]%) was comparable to healthy subjects (11.2 4%) (p = 0.66). In most life areas the level of participation was comparable for both groups, although adults with CP spent more time on non-intensive leisure activities. Participation in sports appeared to be a determinant of everyday physical activity in both groups. Conclusions. The results indicate that the levels of everyday physical activity and community participation in adults with hemiplegic CP are comparable to levels in healthy comparison subjects.

Inactive lifestyle in adults with bilateral spastic cerebral palsy

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.

Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy.

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 health-related 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.

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

Importance of peers and dating in the development of romantic relationships and sexual activity of young adults with cerebral palsy

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).

CARDIOVASCULAR DISEASE RISK IN ADULTS WITH SPASTIC BILATERAL CEREBRAL PALSY

OBJECTIVE To explore: (i) cardiovascular disease risk factors and the 10-year clustered risk of a fatal cardiovascular event in adults with spastic bilateral cerebral palsy; and (ii) relationships between the 10-year risk and body fat, aerobic fitness and physical activity. DESIGN Cross-sectional study. SUBJECTS Forty-three adults with spastic bilateral cerebral palsy without severe cognitive impairment (mean age 36.6 years (standard deviation 6); 27 men). METHODS Biological and lifestyle-related risk factors and the 10-year risk according to the Systematic Coronary Risk Evaluation (SCORE) were assessed. Relationships were studied using multivariable linear regression analysis. RESULTS The following single risk factors were present: hypertension (n = 12), elevated total cholesterol (n = 3), low high-density lipoprotein cholesterol (n = 5; all men), high-risk waist circumference (n = 11), obesity (body mass index; n = 5; all men), reduced aerobic fitness (on average 80% of reference values), reduced level of everyday physical activity (on average 78% of reference values) and smoking (n=9). All participants had a 10-year risk <1%. Corrected for gender, participants with higher waist circumference (β = 0.28; p = 0.06) or body mass index (β=0.25; p = 0.08) tended to have a higher 10-year risk. CONCLUSION In this relatively young adult sample of people with spastic bilateral cerebral palsy several single cardiovascular disease risk factors were present. The 10-year fatal cardiovascular disease risk was low, and higher body fat tended to be related to higher 10-year risk.

Physical Strain of Walking Relates to Activity Level in Adults With Cerebral Palsy

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 (r(2)=.29, P=.10 and r(2)=.27, P=.16, respectively). Physical strain of walking at preferred walking speed was inversely related to total daily walking time (r(2)=.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.

Can a Lifestyle Intervention Improve Physical Fitness in Adolescents and Young Adults With Spastic Cerebral Palsy? A Randomized Controlled Trial

OBJECTIVE To evaluate both the short- and long-term effectiveness of a lifestyle intervention on physical fitness in adolescents and young adults with cerebral palsy (CP). DESIGN Single-blind, randomized controlled trial. SETTING University hospitals and rehabilitation clinics. PARTICIPANTS Adolescents and young adults (N=57) with spastic CP classified in Gross Motor Function Classification System levels I through IV; of these, 42 completed the study. INTERVENTION A 6-month lifestyle intervention consisting of physical fitness training combined with counseling sessions focused on physical behavior and sports participation. MAIN OUTCOME MEASURES Physical fitness, including measures of cardiopulmonary fitness, muscle strength, and body composition. RESULTS Favorable short- and medium-term effects were found for peak oxygen consumption, oxygen consumption, and load on the anaerobic threshold and waist circumference. Favorable long-term effects were found for sum of skinfolds, systolic blood pressure, and total cholesterol. CONCLUSIONS This exploratory study showed that the lifestyle intervention was effective in improving cardiopulmonary fitness and body composition. Effects of body composition were maintained in the long term. However, the intervention needs to be optimized to increase muscle strength and for long-term retention of effects on aerobic capacity.

Health-related physical fitness of ambulatory adolescents and young adults with spastic cerebral palsy.

OBJECTIVE To describe in detail the health-related physical fitness of adolescents and young adults with cerebral palsy, compared with able-bodied references, and to assess differences related to Gross Motor Functioning Classification System (GMFCS) level and distribution of cerebral palsy. DESIGN Cross-sectional. SUBJECTS Fifty ambulatory persons with spastic cerebral palsy, GMFCS level I or II, aged 16-24 years. METHODS Physical fitness measures were: (i) cardiopulmonary fitness by maximal cycle ergometry, (ii) muscle strength, (iii) body mass index and waist circumference, (iv) skin-folds, and (v) lipid profile. RESULTS Regression analyses, corrected for age and gender, showed that persons with bilateral cerebral palsy had lower cardiopulmonary fitness and lower hip abduction muscle strength than those with unilateral cerebral palsy. Comparisons between persons with GMFCS levels I and II showed a difference only in peak power during cycle ergometry. Cardiopulmonary fitness, hip flexion and knee extension strength were considerably lower (< 75%) in persons with cerebral palsy than reference values. CONCLUSION The distribution of cerebral palsy affects fitness more than GMFCS level does. Furthermore, adolescents and young adults with cerebral palsy have reduced health-related physical fitness compared with able-bodied persons. This stage of life has a strong influence on adult lifestyle, thus it is an important period for intervention.