Channah Nieuwenhuijsen

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.

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.

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 rho=.39), and problems with self-care were associated with lower levels of manual ability (Spearman rho=.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.

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.

Physical fitness, everyday physical activity, and fatigue in ambulatory adults with bilateral spastic cerebral palsy

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 124 min/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.

Unmet needs and health care utilization in young adults with cerebral palsy

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.

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.

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.