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Objective: To describe the epidemiology of health status, impairments, activities and participation in adults with cerebral palsy (CP). Data Sources: Embase, MEDLINE, Web of Science, PsycINFO, Cumulative Index to Nursing and Allied Health, Cochrane, and Google Scholar were searched for 3 themes (“cerebral palsy,” “adult,” and “outcome assessment”) in literature published between January 2000 and December 2018. Study Selection: Full-article peer-reviewed English journal articles on descriptive, observational, or experimental studies describ

Purpose: Chronic physical conditions often negatively affect work participation. The objective of this systematic review is to investigate the effectiveness and characteristics of vocational rehabilitation interventions for people with a chronic physical condition. Methods: Searches in five databases up to April 2020 identified 30 studies meeting our inclusion criteria. Two reviewers independently assessed and extracted data. The Grading of Recommendation, Assessment, Development and Evaluation (GRADE) framework was used to evaluate quality of evidence for three outcome measures related to work participation. Results: All vocational rehabilitation interventions consisted of multiple components, but their characteristics varied widely. Analysis of 22 trials yielded a moderate positive effect with moderate certainty of interventions on work status; analysis of five trials with low risk of bias showed a large positive effect with moderate certainty (risk ratio 1.33 and 1.57, respectively). In addition, in eight studies we found a moderate to small positive effect with low certainty on work attitude (standardized mean difference = 0.59 or 0.38, respectively). We found no effect on work productivity in nine studies. Conclusion: The systematic review of the literature showed positive effects of vocational rehabilitation interventions on work status and on work attitude; we found no effect on work productivity.Implications for rehabilitation In rehabilitation, addressing work participation of persons with a chronic physical condition using targeted inter

PURPOSE: Youth with disabilities face challenges regarding achieving autonomy. The ‘Skills for Growing Up’ tool was adapted for use in Dutch pediatric rehabilitation (SGU-D) to support development of autonomy. This study presents the experiences with the SGU-D tool. METHODS: The SGU-D was implemented in 18 settings, of which 4 participated in the evaluation. Rehabilitation professionals were trained in the use of the SGU-D. In a qualitative study, participants were interviewed for their opinions regarding the tool. RESULTS: Experience with the SGU-D was evaluated in 11 youth with disabilities, 11 parents and 8 rehabilitation professionals. They perceived the SGU-D as a helpful tool: i) to support development of autonomy, ii) to focus on future perspectives, and iii) to facilitate communication with family and rehabilitation professionals. Additional support from rehabilitation professionals on using the SGU-D was appreciated. CONCLUSION: Youth with disabilities, their parents and rehabilitation professionals value the SGU-D as a practical tool for working on autonomy, and to identify important areas of development.

PURPOSE: Youth with disabilities face challenges regarding achieving autonomy. The 'Skills for Growing Up' tool was adapted for use in Dutch pediatric rehabilitation (SGU-D) to support development of autonomy. This study presents the experiences with the SGU-D tool. METHODS: The SGU-D was implemented in 18 settings, of which 4 participated in the evaluation. Rehabilitation professionals were trained in the use of the SGU-D. In a qualitative study, participants were interviewed for their opinions regarding the tool. RESULTS: Experience with the SGU-D was evaluated in 11 youth with disabilities, 11 parents and 8 rehabilitation professionals. They perceived the SGU-D as a helpful tool: i) to support development of autonomy, ii) to focus on future perspectives, and iii) to facilitate communication with family and rehabilitation professionals. Additional support from rehabilitation professionals on using the SGU-D was appreciated. CONCLUSION: Youth with disabilities, their parents and rehabilitation professionals value the SGU-D as a practical tool for working on autonomy, and to identify important areas of development.

Objective: To identify areas of functioning in adults with cerebral palsy that are considered relevant by experts, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy. Participants: Experts from various professional backgrounds worldwide who had experience working with adults with cerebral palsy for

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.

Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references. Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health. Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy. Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.Implications for rehabilitation Except for those in the highest level of motor function, young adults with cerebral palsy report higher levels of pain and fatigue compared to the general population of the same age. Pain and fatigue are strongly interrelated and associated with mental health in young adults with cerebral palsy. The present study recommends to monitor pain and fatigue in young adults with cerebral palsy with low levels of gross motor function. We advise rehabilitation professionals to consider combined treatment for both pa

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

Background: Estimates of multimorbidity, defined as the presence of at least two chronic conditions, some of which attributable to modifiable behaviours, are high in adults with cerebral palsy (CP). An assessment protocol evaluating multimorbidity risk is needed in order to develop and evaluate effective interventions to optimize lifelong health in individuals with CP. The aim of this protocol paper is to describe the development of a core outcome set (COS) for assessing multimorbidity risk in adolescents and adults with CP, to be used in clinic and research. Methods: The expert consortium will first define the target population and outcomes to be measured. Through a process of literature review and an international Delphi survey with expert clinicians and researchers, we will then determine which outcome measurement instruments (OMIs) can best measure those outcomes. The resulting OMIs will be used in a feasibility study with adolescents and adults with CP from an international clinical research network. Finally, a face-to-face stakeholder meeting with adolescents and adults with CP, their families/caregivers and researchers and clinicians who are experts in CP, will be organized to reach final agreement on the COS. Discussion: This COS will guide clinicians and researchers in assessing multimorbidity risk in adolescents and adults with CP. The inclusion of experts and individuals with CP from international locations for establishing the COS lends strong support to its generalizability. Evidence of its feasibility and approval from all stakeholders will enable implementation in clinical practice, and guide future research using the COS in individuals with CP.

Background: The purpose of this study was to describe the interventions implemented in a quality improvement programme to improve transitional care and evalu

Objectives To evaluate manual activity capacity (i.e. activity capacity to perform hand activities) and its relation with body functions of the hand and forearm in children with congenital hand differences (CHD) Methods We assessed 10-14 year-old children with CHD (N = 106) using a functional handgrips test. Measurements of body functions included joint mobility and muscle strength. Patient characteristics were hand dominance and severity. Results We found a stronger relation between body functions and manual activity capacity in non-dominant hands than dominant hands. Dominant hands scored significantly higher on manual activity capacity than nondominant hands that were similarly impaired at body functions level. Severity of the CHD and body functions had only small effects on manual activity capacity. Conclusion The relation between body functions and manual activity capacity is stronger in non-dominant hands than dominant hands, indicating that improvement in body functions lead to larger changes in manual activity capacity in the non-dominant hand. This may suggest that in bilaterally-affected children surgery should be done at the non-dominant hand first since this hand would benefit most from surgery-induced body functions improvement.

Background: This study aimed to assess fatigue amongst young adults with spastic cerebral palsy (CP), to determine subgroups at risk for fatigue and to explore the relationship between fatigue and cardiopulmonary fitness and daily physical activity level. Participants: Young adults with spastic CP, Gross Motor Function Classification System (GMFCS) levels I to III, aged 16 to 24 years. Methods: Fatigue (Fatigue Severity Scale) and self-reported daily physical activity (Physical Activity Scale for Individuals with Physical Disabilities) were assessed for 56 participants using questionnaires. Daily physical activity was objectively measured using accelerometry (Vitamove system) over 72 hours. Progressive maximal aerobic cycling was used to measure cardiopulmonary fitness. Results: The mean Fatigue Severity Scale (FSS) score was 3.7 (SD 1.4). Forty percent of participants were fatigued, including 12.5% who were severely fatigued. Participants with bilateral CP (FSS = 4.2 (SD 1.4)) were more fatigued compared to those with unilateral CP (FSS = 3.1 (SD 1.3)) (p < 0.01). Levels of cardiopulmonary fitness (2.4 L/min (SD 0.8)) and daily physical activity (8.5% (SD 3.0)) were not significantly related to fatigue (respectively p = 0.10 and p = 0.55), although for cardiopulmonary fitness a trend was found. Conclusions: Fatigue is already present at a relatively young age amongst adults with CP, and CP subtype is a determinant of fatigue. We did not find significant evidence for a cross-sectional relation of fatigue with cardiopulmonary fitness or daily physical activity. Trial registration: Nederland's trial register: NTR1785.

Background: To assess physical behaviour, including physical activity and sedentary behaviour, of ambulatory adolescents and young adults with cerebral palsy (CP). We compared participant physical behaviour to that of able-bodied persons and assessed differences related to Gross Motor Functioning Classification System (GMFCS) level and CP distribution (unilateral/bilateral). Methods. In 48 ambulatory persons aged 16 to 24 years with spastic CP and in 32 able-bodied controls, physical behaviour was objectively determined with an accelerometer-based activity monitor. Total duration, intensity and type of physical activity were assessed and sedentary time was determined (lying and sitting). Furthermore, distribution of walking bouts and sitting bouts was specified. Results: Adolescents and young adults with CP spent 8.6% of 24 hours physically active and 79.5% sedentary, corresponding with respectively 123 minutes and 1147 minutes per 24 hours. Compared to able-bodied

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.

Tussen 2008 en 2012 is het Actieprogramma Op Eigen Benen Vooruit! uitgevoerd in drie rondes van elk 10 teams (Testfase, Verspreidingsfase 2010 en Verspreidingsfase 2011). Het programma richtte zich op verbetering van de transitie van kinder- naar volwassenenzorg en op bevordering van zelfmanagement van jongeren met chronische aandoeningen (12-25 jaar) in ziekenhuizen en revalidatiecentra. De Doorbraakmethod

To determine upper limb function and associated factors in adults with Duchenne muscular dystrophy. Design: Cross-sectional study. Subjects: A sample of 70 men with Duchenne muscular dystrophy (age range 20-43 years). Methods: General motor function and, in particular, upper limb distal motor function, were assessed with the Motor Function Measure. Muscle strength and range of motion of the upper limb were evaluated using hand-held dynamometry, manual muscle-testing and goniometry. Associations were studied using Spearman's correlation coefficients and multiple linear regression analysis. Results: General motor function was severely impaired. Wide variability was found in distal motor function, muscle strength and range of motion of the upper limb, especially in early adulthood. Muscle strength and range of motion explained 76% of the variance in upper limb distal motor function. Conclusion: This study illustrates a large variability in upper limb function in adult patients with Duchenne muscular dystrophy, and identifies muscle strength and range of motion as factors strongly associated with upper limb function. These results suggest that preserving muscle strength and range of motion in Duchenne patients might be relevant for a better outcome of distal motor function of the upper limb when adult.

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.

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 yea

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.

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.

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.

This study identified which residual-limb quality factors are related to functional mobility 1 year after transtibial (TT) amputation. A group of 28 TT amputees were evaluated with respect to their functional mobility (Prosthesis Evaluation Questionnaire [PEQ], Locomotor Index, Timed Up and Go test). The general (Chakrabarty score) and bony (tibial length, relative fibular length) residual-limb quality factors were assessed. An increase in general residual-limb quality (Chakrabarty >60) was correlated with greater functional mobility in one of the outcome measures (PEQ). For bony residual-limb quality, a tibial length of 12-15 cm distal from the knee joint line was correlated with greater functional outcome for all three outcome measures and the relative fibular length was not correlated with functional mobility for any of the outcome measures. This study showed that specific aspects of residual-limb quality are related to increased functional mobility. The amputation technique and resulting residual-limb factors may be important for patients to achieve functional prosthetic use.

Objective: To compare the outcome of muscle strength with manual muscle strength testing grip and pinch strength measurements and a dynamometer which allows for measurements of the intrinsic muscles of the hand in isolation (the Rotterdam Intrinsic Hand Myometer, RIHM). Methods: Thirty-four patients more than 2 years after ulnar and/or median nerve injury. Muscle strength was evaluated using manual muscle strength testing (MMST), grip, pinch and intrinsic muscle strength measurements. Results: Manual muscle strength testing showed that most muscles recover to grade 3 or 4. Average grip strength recovery, as percentage of the uninjured hand, was 83%. Pinch strength recovery was 75%, 58% and 39% in patients with ulnar, median and combined nerve injuries, respectively. The RIHM measurements revealed a poor recovery of the ulnar nerve innervated muscles in particular (26-37%). No significant correlation (Pearson) was found between the measurements of the RIHM and grip strength. Pinch strength was significantly correlated with strength of the abduction of thumb and opposition of the thumb strength (r 0.55 and 0.72, p = 0.026, 0.002) as measured with the RIHM. Conclusion: While manual muscle strength testing and grip strength measurements show a reasonable to good recovery, measurements of the intrinsic muscles by means of the RIHM showed poor recovery of intrinsic muscle strength after peripheral nerve injury. No correlation was found between the recovery of intrinsic muscle strength and grip strength measurements.