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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: To determine the responsiveness to change of isokinetic dynamometry of the shoulder and to compare this responsiveness with outcome measures of pain and activity level. Design: Responsiveness was evaluated as the change in outcome after intra-articular steroid injection in patients with capsulitis of the shoulder. Effect sizes of all outcome measures, quantified as standardized response means, were compared. Relationships between change scores of shoulder function and activities were assessed. Subjects: Ten patients with unilateral capsulitis of the shoulder. Main outcome measures: Muscle strength and active range of motion were measured by isokinetic dynamometry. We then calculated involved/uninvolved ratios of the maximal peak torques of abduction, adduction, external and internal rotation, active range of motion of abduction and external rotation. In addition, pain was scored using the numeric rating scale (NRS-101) and activity level was scored using the Shoulder Disability Questionnaire. Results: The standardized response mean of all outcome parameters was equal to or greater than 0.8, except for active range of motion of abduction. No significant differences between the standardized response means were found. There is a significant correlation between the change scores of NRS-101 and Shoulder Disability Questionnaire. No significant correlations were found between the change scores of NRS-101 and Shoulder Disability Questionnaire on the one hand, and involved/uninvolved ratios of peak torques and active range of motion on the other. Conclusions: Responsiveness of all outcome measures is good. Parameters of isokinetic dynamometry may provide additional information as compared with the usual outcome measures of pain and functional level. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the effect of a lifestyle intervention on fatigue, participation, quality of life, gross motor functioning, motivation, self-efficacy and social support, and to explore mediating effects of physical behavior and physical fitness. Design: A randomized controlled trial with intention to treat analysis. Setting: Rehabilitation centers in university hospitals in the Netherlands. Subjects: Adolescents and young adults with spastic cerebral palsy. Interventions: A six-month lifestyle intervention that consisted of physical fitness training combined with counseling sessions focused on physical behavior and sports participation. Main measures: Fatigue, social participation, quality of life and gross motor functioning. Results: The lifestyle intervention was effective in decreasing fatigue severity during the intervention (difference = -6.72, p = 0.02) and in increasing health-related quality of life with respect to bodily pain (difference = 15.14, p = 0.01) and mental health (difference = 8.80, p = 0.03) during follow-up. Furthermore, the domain participation and involvement of the social support increased during both the intervention (difference = 5.38, p = 0.04) and follow-up (difference = 4.52, p = 0.03) period. Physical behavior or physical fitness explained the observed effects for 22.6%, 9.7% and 28.1% of improvements on fatigue, bodily pain and mental health, but had little effect on social support (2.6%). Interpretation: Fatigue, bodily pain, mental health and social support can be improved using a lifestyle intervention among adolescents and young adults with cerebral palsy. Furthermore, substantial mediating effects were found for physical behavior and physical fitness on fatigue, bodily pain and mental health. [ABSTRACT FROM AUTHOR]

Background Transition from paediatric to adult healthcare has received little attention in the Netherlands. This study aimed to: (i) map experiences with the transfer to adult care of young adults with chronic conditions; and (ii) identify recommendations for transitional care of young adults, their parents and healthcare providers. Methods Semi-structured interviews with 24 young adults after transfer (aged 15-22 years; diagnosed with haemophilia, diabetes mellitus, spina bifida, congenital heart disorders, cystic fibrosis, juvenile rheumatoid arthritis or sickle cell disease), 24 parents and 17 healthcare providers. Thematic analysis was performed. Results Only the haemophilia department offered a structured transition programme, most patients had not been prepared for transition. Experiences and views of patients, parents and professionals mainly overlapped and were condensed into four core themes. Two are related to moving to adult care: (1) 'leaving paediatric care is a logical step'. Leaving familiar surroundings was harder for parents than for young adults who displayed a positive 'wait-and-see' attitude; and (2) 'transition is complicated by cultural gaps between paediatric and adult services'. Young adults and parents felt lost after transfer and recommended their peers 'to be alert and involved'. Providers also recognized the cultural chasm between both services and worried about non-compliance, lost to follow-up and lack of independence. Two other themes indicated priorities for improvement: (3) 'better patient and parent preparation' for differences between healthcare settings and for new roles and responsibilities with respect to self-management; and (4) 'more collaboration and personal links' between paediatric and adult care providers. Conclusions Action is required to cross the chasm between paediatric and adult-oriented care. Preparation for transition should start early and focus on strengthening adolescents' independency without undermining parental involvement. Building bridges between services, gaining trust and investing in new personal relations is a challenge for all parties involved: transition is about responding and bonding. [ABSTRACT FROM AUTHOR]

Aim: To determine the long‐term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method: Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12–34y); were assessed cross‐sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p<0.05). Results: In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation. Interpretation: This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function. What this paper adds: Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains.Regarding intimate relationships, they continued to have less experience compared to age‐matched references.Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V. What this paper adds: Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains.Regarding intimate relationships, they continued to have less experience compared to age‐matched references.Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations. [ABSTRACT FROM AUTHOR]

Aim: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP).Method: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90 ) using nonlinear mixed-effects modeling.Results: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large.Interpretation: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development.What This Paper Adds: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis often leads to fatigue and changes in physical behavior (PB). Changes in PB are often assumed as a consequence of fatigue, but effects of interventions that aim to reduce fatigue by improving PB are not sufficient. Since the heterogeneous nature of MS related symptoms, levels of PB of fatigued patients at the start of interventions might vary substantially. Better understanding of the variability by identification of PB subtypes in fatigued patients may help to develop more effective personalized rehabilitation programs in the future. This study aimed to identify PB subtypes in fatigued patients with multiple sclerosis based on multidimensional PB outcome measures.Methods: Baseline accelerometer (Actigraph) data, demographics and clinical characteristics of the TREFAMS-ACE participants (n = 212) were used for secondary analysis. All patients were ambulatory and diagnosed with severe fatigue based on a score of ≥35 on the fatigue subscale of the Checklist Individual Strength (CIS20r). Fifteen PB measures were used derived from 7 day measurements with an accelerometer. Principal component analysis was performed to define key outcome measures for PB and two-step cluster analysis was used to identify PB types.Results: Analysis revealed five key outcome measures: percentage sedentary behavior, total time in prolonged moderate-to-vigorous physical activity, number of sedentary bouts, and two types of change scores between day parts (morning, afternoon and evening). Based on these outcomes three valid PB clusters were derived.Conclusions: Patients with severe MS-related fatigue show three distinct and homogeneous PB subtypes. These PB subtypes, based on a unique set of PB outcome measures, may offer an opportunity to design more individually-tailored interventions in rehabilitation.Trial Registration: Clinical trial registration no ISRCTN 82353628 , ISRCTN 69520623  and  ISRCTN 58583714 . [ABSTRACT FROM AUTHOR]