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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 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. [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]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

PURPOSE: To explore whether cognitive functioning in patients with meningomyelocele (MMC) is related to level of everyday physical activity. METHOD: In a cross-sectional study in 14 patients with MMC (aged 14 - 26 years) a neuropsychological test battery was administered to each patient. Everyday physical activity of the patients was measured with an accelerometry-based Activity Monitor (AM), and compared to 14 healthy comparison subjects. RESULTS: Intellectual ability of 10 patients was in the normal range. For memory and verbal learning, executive functioning, divided attention and reaction speed subnormal scores were present in six or more patients. Time spent on dynamic activities was low in patients with MMC as compared to healthy subjects. After controlling for intellectual ability, we found that in patients with MMC (i) executive functioning was positively related, and (ii) word production was negatively related to everyday physical activity. CONCLUSION: We found some indication that specific impairments in executive functioning might be related to everyday physical activity of adolescents and young adults with MMC. [ABSTRACT FROM AUTHOR]

Purpose. Describing the epidemiology of cerebral palsy (CP), its impairments and risk factors. Method. Literature review 1965-2004. Search terms: Cerebral palsy, incidence, prevalence, impairments, risk factors. Results. In the last 40 years the prevalence of CP has risen to well above 2.0 per 1000 life births. In this time span the proportion of low-birthweight infants rose, the proportion of diplegia decreased, while the proportion of hemiplegia increased. CP is more prevalent in more deprived socio-economic populations. The majority of people with CP have the spastic syndrome of which the diplegic group is the smallest. Dependent on the subgroup of CP, 25-80% have additional impairments. A large proportion has some kind of cognitive impairment; the prevalence varies with the type of CP and especially increases when epilepsy is present. Epilepsy is present in 20-40%; it is most common among the hemi- and tetraplegics. Sensibility of the hands is impaired in about half. Chronic pain is reported by more than a quarter of the adults. Up to 80% have at least some impairment of speech. Low visual acuity is reported in almost three-quarters of all children. Half of all children have gastrointestinal and feeding problems. Stunted growth occurs in a quarter, while under- or overweight problems are present in half of the children. Almost 70% of people with spastic CP have abnormal brain CT findings; abnormal cranial ultrasounds is most strongly associated with hemiplegia, normal cranial ultrasounds with diplegia. The most important risk factors for CP are low birthweight, intrauterine infections and multiple gestation. [ABSTRACT FROM AUTHOR]

Purpose. Selection of appropriate functional tests and questionnaires to assess capacity (tests) and performance (questionnaires) of arm/hand functioning in children with congenital transverse or longitudinal (radius dysplasia) reduction deficiencies of the upper limb. Method. A PubMed Medline search was performed. Tests and questionnaires were evaluated according to three criteria: (1) items represent bimanual daily activities, (2a) quality of movement is scored (tests) or (2b) difficulty in performing a task (questionnaires), (3) instrument is attractive for children aged 4 - 12. Results. We found 14 functional tests and nine questionnaires to measure arm/hand functioning. Three tests, the Assisting Hand Assessment (AHA), Unilateral Below Elbow Test (UBET) and University of New Brunswick Test of prosthetic function (UNB Test) and two questionnaires, the Prosthetic Upper limb Functional Index (PUFI) and the children's version of the ABILHAND (ABILHAND-Kids) met the criteria. Conclusions. Two functional tests (AHA and UBET) and two questionnaires (ABILHAND-Kids and PUFI) were considered appropriate to assess arm/hand functioning in children with congenital reduction deficiencies of the upper limb, but require further study on psychometric properties for these patient groups. [ABSTRACT FROM AUTHOR]

There is no consensus on the optimal isokinetic dynamometry parameters to clinically assess shoulder disorders. Therefore, this study aimed to establish which parameters are best able to discriminate between shoulder patients and healthy subjects, focusing on peak torques and peak torque ratios.Isokinetic dynamometric measurements of both shoulders were made in 20 healthy subjects and these data were compared with baseline measurements in 9 patients with shoulder disorders. The different outcome measures were compared by testing for significant group differences between patients and healthy subjects and by scoring how the patient data compared to the normal range of values found in healthy subjects.Significant differences between patients and healthy subjects were found for the peak torques, but not for the agonist-antagonist peak torque ratios. In addition, there were significant differences for the dominant/non dominant ratios of the peak torques but not for the dominant/non dominant ratios of the peak torque ratios. The percentage of patients with a standard deviation score outside the 90% normal distribution of healthy subjects was largest (>78%) for the involved/uninvolved (I/U) ratio of the peak torques.It was concluded that bilateral comparison of peak torques is the most appropriate outcome parameter to distinguish patients from healthy subjects. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Data on body fat and fitness in adolescents and young adults with meningomyelocele are scarce. The aim of this study was to assess body fat and fitness in this patient group. In addition, we explored whether the level of everyday physical activity is related to body fat and fitness. SUBJECTS AND METHODS: Body fat (skinfold thickness), fitness (VO2peak), and everyday physical activity (Activity Monitor, based on accelerometry) were measured in 14 patients with meningomyelocele (8 men, 6 women; age range 14-26 years). RESULTS: Peak VO2 was 20-30% lower than reference values and 4 patients were obese. Level of everyday activity was related to fitness (rs = 0.65, p = 0.01) but not to body fat. CONCLUSION: Young patients with meningomyelocele are at risk for developing obesity and have a distinctly subnormal fitness. Level of everyday physical activity is related to fitness in this patient group. [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]

Background: The work participation of young adults with chronic physical conditions lag behind compared to healthy age-mates. 'At Work' is a vocational rehabilitation intervention provided by occupational therapists, that supports them for entering the competitive labour market after graduating post-secondary education., Aim: To evaluate the effects of 'At Work' on self-efficacy, work-ability and employment status as compared to usual care., Materials and Methods: In total, 88 young adults were included in a multicentre controlled trial; 49 entered 'At Work', 39 received usual care. GEE-analyses were applied., Results: Scores on all outcome measures substantially improved over time in the intervention group, but no significant effects were found as compared to the control group. The effect on general self-efficacy showed a positive trend in favour of the intervention group., Conclusions and Significance: Unlike previous study results pointing to positive outcomes of At Work', the current study did not support the effectiveness of this program on work-related self-efficacy, work-ability and paid employment, as compared to usual care. Yet, we did find an indication for positive intervention effect on general self-efficacy, which is known to be an important capacity to achieve social participation.

Aim: To identify meaningful outcomes of children and their caregivers attending a paediatric brain centre., Method: We compiled a long list of outcomes of health and functioning of children with brain-related disorders such as cerebral palsy, spina bifida, (genetic) neurodevelopmental disorders, and acquired brain injury. We incorporated three perspectives: patients, health care professionals, and published outcome sets. An aggregated list was categorized using the International Classification of Functioning, Disability, and Health: Children and Youth version in a patient validation survey for children and parent-caregivers to prioritize outcomes. Outcomes were considered meaningful when ranked 'very important' by 70% or more of the participants., Results: We identified 104 outcomes from the three perspectives. After categorizing, 59 outcomes were included in the survey. Thirty-three surveys were completed by children (n = 4), caregivers (n = 24), and parent-caregivers together with their child (n = 5). Respondents prioritized 27 meaningful outcomes covering various aspects of health and functioning: emotional well-being, quality of life, mental and sensory functions, pain, physical health, and activities (communication, mobility, self-care, interpersonal relationships). Parent-caregiver concerns and environmental factors were newly identified outcomes., Interpretation: Children and parent-caregivers identified meaningful outcomes covering various aspects of health and functioning, including caregiver concerns and environmental factors. We propose including those in future outcome sets for children with neurodisability., What This Paper Adds: Outcomes that children with brain-related disorders and their parent-caregivers consider to be the most meaningful cover a wide range of aspects of functioning. Involving these children and their parent-caregivers resulted in the identification of important outcomes that were not covered by professionals and the literature. Parent-caregiver-related factors (coping, burden of care) and environmental factors (support, attitudes, and [health care] services) were identified as meaningful., (© 2023 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Background: For patients with post-stroke upper limb impairments, the currently available clinical measurement instruments are inadequate for reliable quantification of multiple impairments, such as muscle weakness, abnormal synergy, changes in elastic joint properties and spasticity. Robotic devices to date have successfully achieved precise and accurate quantification but are often limited to the measurement of one or two impairments. Our primary aim is to develop a robotic device that can effectively quantify four main motor impairments of the elbow., Methods: The robotic device, Shoulder Elbow Perturbator, is a one-degree-of-freedom device that can simultaneously manipulate the elbow joint and support the (partial) weight of the human arm. Upper limb impairments of the elbow were quantified based on four experiments on the paretic arm in ten stroke patients (mean age 65 ± 10 yrs, 9 males, post-stroke) and the non-dominant arm in 20 healthy controls (mean age 65 ± 14 yrs, 6 males). The maximum strength of elbow flexor and elbow extensor muscles was measured isometrically at 90-degree elbow flexion. The maximal active extension angle of the elbow was measured under different arm weight support levels to assess abnormal synergy. Torque resistance was analyzed during a slow (6°/s) passive elbow rotation, where the elbow moved from the maximal flexion to maximal extension angle and back, to assess elastic joint properties. The torque profile was evaluated during fast (100°/s) passive extension rotation of the elbow to estimate spasticity., Results: The ten chronic stroke patients successfully completed the measurement protocol. The results showed impairment values outside the 10 th and 90 th percentile reference intervals of healthy controls. Individual patient profiles were determined and illustrated in a radar figure, to support clinicians in developing targeted treatment plans., Conclusion: The Shoulder Elbow Perturbator can effectively quantify the four most important impairments of the elbow in stroke patients and distinguish impairment scores of patients from healthy controls. These results are promising for objective and complete quantification of motor impairments of the elbow and monitoring patient prognosis. Our newly developed Shoulder Elbow Perturbator can therefore in the future be employed to evaluate treatment effects by comparing pre- and post-treatment assessments., (© 2022. The Author(s).)

Background: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health., Objective: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference., Methods: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis., Results: In total, 101 participants were included, of whom 69 without intellectual disability (mean age ± SD of 38.4 ± 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I-V) and 32 with intellectual disability (mean age ± SD of 25.0 ± 6.4 y; 71.9% with spastic type of CP; GMFCS levels I-V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors., Conclusions: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Aim: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels., Method: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min-max: 14-68y, 52.2% male) at four centres. Prevalence of multimorbidity risk and associations with GMFCS levels are described., Results: Most participants rated physical behaviour, nutrition, sleep, and endurance as very important. Body composition, blood pressure, nutrition, and sleep were highly feasible since data were collected in 88% or more participants who consented to having the assessments. Physical behaviour, cardiorespiratory endurance, and blood draws were collected in less than 60% of participants. Total time sedentary (ρ=0.53, p<0.01) and endurance (ρ=-0.46, p<0.01) were significantly associated with GMFCS level., Interpretation: The COS identified that most participants had poor sleep quality and endurance, did not have healthy diets, and showed increased sedentary behaviour. Individuals with CP valued these outcomes as most important, suggesting a need to assess these modifiable behaviours in this population. Objective measures of physical behaviour and cardiorespiratory endurance in the COS required additional personnel, time, and participant burden. We recommend that healthcare providers should perform a simpler first screen using questionnaire-based assessments and then focus the use of the remainder of the COS if required for the patient., (© 2022 Mac Keith Press.)

Objective: To assess test-retest reliability and validity of a new diagnostic device, the Shoulder Elbow Perturbator, to quantify muscle weakness, abnormal synergy, (muscle activity-related) spasticity, and changes in viscoelastic joint properties of the elbow., Subjects: Stroke patients, adults with cerebral palsy and healthy controls., Methods: Test-retest reliability was evaluated using intra-class correlations (ICC) and assessment of measurement error. The device's validity was evaluated by demonstrating differences between patients and healthy controls, and correlations of spasticity and abnormal synergy outcomes using the clinical Modified Tardieu Scale, the Fugl-Meyer Assessment, and the Test of Arm Selective Control., Results: Reliability was excellent, with an ICC > 0.75 for synergy and ICCs > 0.90 for all other impairments, with relatively small measurement errors. Validity was confirmed by group differences between patients and healthy controls for muscle weakness, spasticity, and viscoelastic joint properties, but not for abnormal synergy. Correlation analysis with clinical scales confirmed validity for spasticity, while, for synergy, correlations were found in the patients with stroke, but not those with cerebral palsy., Conclusion: This new diagnostic device is a reliable and valid instrument to assess multiple upper limb impairments in patients with neurological conditions, supporting its use in clinical practice. Further studies are needed to confirm these findings.

Aim: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP)., Method: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study., Results: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies., Interpretation: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide., (© 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

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 rehabilitationIn rehabilitation, addressing work participation of persons with a chronic physical condition using targeted interventions is beneficial to improve or sustain work participation, irrespective of the intervention characteristics and diagnosis.Interventions that include multiple components and offer individual support, whether or not combined with group sessions, are likely to be more effective in improving work participation in persons with a chronic physical condition.The overview of vocational interventions in this systematic review may assist healthcare professionals in making informed decisions as to which intervention to provide.Vocational rehabilitation, as well as studies on work participation in chronic disease, should include a long follow-up period to explore if work participation is sustainable and contributes to health and wellbeing.

Aim: To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP., Method: We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers., Results: In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I-IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III-V) participated. We identified 132 unique second-level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services., Interpretation: Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper adds Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems., (© 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

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 rehabilitationExcept 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 pain and fatigue.

Purpose: Employment of young adults with chronic physical conditions entering the labor market after finishing post-secondary education remains behind compared to typically developing peers. The aim of this study is to evaluate changes in their paid employment levels after following a vocational rehabilitation intervention ('At Work')., Materials and Methods: Participants aged between 16 and 27 years ( n  = 90) were recruited via rehabilitation physicians and a jobcoach agency and participated in a vocational rehabilitation program. Cochran's Q and McNemar tests served to test the development of intervention participants' paid employment over time. Chi-square tests were used to compare intervention participants' paid employment level with national reference data selected on age and having a self-reported chronic physical condition., Results: Paid employment level of the intervention cohort significantly increased from 10.0% at baseline to 42.4% at 2-years follow-up ( p  < 0.001). At 2-years follow-up, their employment rates approached the employment rates of national reference data (42.4% versus 52.9%, p  = 0.17)., Conclusion: Starting from a disadvantaged position, the paid employment rate of the intervention cohort substantially increased over time, approaching the employment rate of reference data. 'At Work' seems to be appropriate for supporting this specific group who face obstacles to enter the labor market, to find competitive employment.IMPLICATIONS FOR REHABILITATION'At Work' is a vocational rehabilitation intervention for young adults with chronic physical conditions who experience problems with finding and maintaining competitive employment after finishing post-secondary education.The 'At Work' intervention entails a combination of group sessions and individual coaching sessions based on the supported employment methodology.Paid employment rates of the intervention cohort substantially increased on the short- and long term, and approached employment rates of reference data of persons with chronic physical conditions.The 'At Work' intervention seems appropriate to support young adults with chronic physical conditions who experience barriers for work participation, to enter the labor market and find competitive and sustainable employment.

Background: There is little focus on adults with cerebral palsy (CP) in research and health care and insufficient knowledge on how to identify and manage pain in this population., Objectives: This systematic review and meta-analysis aimed to determine whether pain prevalence in adults with CP is high and to explore variations in pain prevalence of subgroups, pain locations, pain severity and pain interference., Methods: Potential datasets were identified by experts in the field and literature searches in Embase, MEDLINE, and Cochrane, from January 2000 to October 2016. Included studies had a representative sample of ≥25 adults with CP and ≥1 pain outcomes. Methodological quality assessment, pain prevalence estimates and logistic regression models for subgroup effects on pain prevalence were conducted., Results: In total, 17 eligible studies were identified from 4584 publications. A meta-analysis was performed with individual participant data from 15 studies totalling 1243 participants (mean [SD] age 34.3 [12.6] years). Overall mean pain prevalence was 70% (95% CI 62-78). Women were more likely to have pain than men (P<0.001). The odds of pain was increased in adults with gross motor function level II (odds ratio [OR] 1.92, 95% CI 1.22-3.12) and IV (OR 1.77, 95% CI 1.03-4.29). Participants with pain reported pain predominantly in the legs (76%, 95% CI 66-84), and mean pain severity was 3.7/10 (95% CI 2.7-4.7) and pain interference 3.5/10 (95% CI 2.5-4.5)., Conclusions: This meta-analysis provides the first reliable pain prevalence estimate in a large international sample of adults with CP. The high prevalence of pain, 70%, suggests that adults with CP should be routinely screened for pain and treated accordingly. The range of measurement instruments used by the included studies emphasizes using common outcome measures specific to pain internationally., (Copyright © 2020 Elsevier Masson SAS. All rights reserved.)

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 describing the most studied outcomes in adults with CP (n≥25, age≥18y) were included. Studies were included in the analyses if frequently studied outcomes were described in at least 3 studies using similar methods of assessment., Data Extraction: Data were extracted independently by 2 authors from 65 articles (total N=28,429) using a standardized score sheet., Data Synthesis: Meta-analyses revealed that overall, on average 65.1% (95% confidence interval [CI], 55.1-74.5) of adults with CP experienced pain, 57.9% (95% CI, 51.1-64.6) were ambulant, 65.5% (95% CI, 61.2-69.7) had little or no limitation in manual ability, 18.2% (95% CI, 10.6-27.2) had tertiary education, 39.2% (95% CI, 31.5;47.1) were employed, and 29.3% (95% CI, 9.0-55.3) lived independently. In adults without intellectual disability, proportions of individuals who were ambulant (72.6% [95% CI, 58.8-84.5]) and lived independently (90.0% [95% CI, 83.8-94.9]) were higher (P=.014 and P<.01, respectively). The Fatigue Severity Scale score was 4.1 (95% CI, 3.8-4.4). Epilepsy (28.8% [95% CI, 20.1-38.4]) and asthma (28.3% [95% CI, 18.7-38.9]) were especially prevalent comorbidities., Conclusions: The present systematic review and meta-analysis on the epidemiology of adults with CP provided state-of-the-art knowledge on the most frequently studied outcomes. On average, adults with CP are fatigued, and a majority experience pain, are ambulant, and have little or no difficulty with manual ability. On average, 40% are employed and 30% live independently. More uniformity in assessment and reports is advised to improve knowledge on epidemiology and gain insight in more outcomes., (Copyright © 2020 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

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 ≥2 years and were able to complete the survey in the English language., Methods: A cross-sectional study using an international internet-based survey. The experts were asked to address relevant areas of functioning in adults with cerebral palsy. These areas of functioning were then linked to the ICF and the frequencies analysed., Results: A total of 126 experts from 32 countries completed the survey. From the responses, 217 unique second-level ICF categories were identified. The three most frequently mentioned categories were "design, construction and building products and technology of buildings for public use (e150, 77%) and private use" (e155, 67%), followed by "sensation of pain" (b280, 62%)., Conclusion: The broad diversity of ICF categories reported by the experts emphasize the known heterogeneity of cerebral palsy and the variety of func-tioning in adulthood. They also reported on many environmental factors, illustrating the importance of person-environment interactions. These findings provide information about relevant issues for use in developing an ICF Core Set for adults with cerebral palsy.

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., (© 2019 Mac Keith Press.)

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 (age 90 ) 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. Ages 90 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., (© 2019 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

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.

Background: Adults with cerebral palsy (CP) may experience problems with participation in domestic life and interpersonal relationships., Aims: To identify teenage predictors of adult participation in domestic life and interpersonal relationships., Methods and Procedures: This 13-year follow-up of the PERRIN 16-24 cohort included 53 adults with CP without intellectual disability [current age 31.7 (SD = 1.4) years]. Participation performance was assessed as attendance (Vineland Adaptive Behavior Scales), and difficulty/assistance with participation (Life Habits questionnaire). 56 teenage factors were categorized in ICF components. Stepwise multiple linear regression analyses explored predictors of participation., Outcomes and Results: Lower gross motor capacity, following special education, having protective parents and a rigid personality predicted less participation in domestic life. Having rejective parents, receiving little daily support, having a socially avoidant personality or coping style and the male gender predicted less participation in interpersonal relationships. Lower activity and participation levels as a teenager predicted less participation in both domestic life and interpersonal relationships of adults with CP., Conclusions and Implications: Environmental and personal factors, gross motor capacity and teenage participation were predictors of participation of adults with CP. These factors help identify subgroups at risk for suboptimal adult participation and provide targets for rehabilitation., (Copyright © 2019. Published by Elsevier Ltd.)

Objective: To identify existing outcome measurement instruments (OMIs) assessing risk factors for cardiometabolic disease in adolescents and adults with cerebral palsy (CP) reported on in the literature or used in the field., Data Sources: The COnsensus-based Standards for the selection of health Measurement Instruments database of systematic reviews and 4 electronic databases (Embase, MEDLINE/Ovid, MEDLINE/Pubmed, PsychINFO) were searched up to June 19, 2017, that yielded 2594 articles. Experts in the field were consulted to identify any additional OMIs., Study Selection: Two reviewers independently applied inclusion criteria to select eligible studies using or evaluating measurement properties of OMIs assessing 1 of 8 outcomes: cardiorespiratory endurance, body size, body composition, physical behavior, sleep, nutrition, blood pressure, and blood lipids and glucose. Studies with an experimental or observational design including ≥10 adolescents or adults with CP were included., Data Extraction: One reviewer extracted data that were summarized for study and sample characteristics, outcomes, OMIs used, and if applicable data on measurement properties. Two reviewers rated the methodological quality and the quality of the OMIs. Feasibility for clinical practice and research was rated by experts in the field., Data Synthesis: Ninety OMIs were identified from 56 included articles and by the experts. Seventy OMIs pertained to cardiorespiratory endurance, body size, body composition, and physical behavior, whereas only 5 were identified for sleep and nutrition. Overall synthesis revealed that there is moderate to poor evidence for good quality of OMIs in this population. Based on feasibility for clinical practice, experts agreed on a single OMI per outcome (and 2 for cardiorespiratory endurance) to be included in a core set., Conclusion: Despite the range of available OMIs to assess risk factors for cardiometabolic disease in adolescents and adults with CP, evidence of good quality is often lacking. Nonetheless, a preliminary core set of 9 OMIs was systematically developed., (Copyright © 2019 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Aim: In the context of the development of an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy (CP), this systematic review sought to identify the outcome measures used in studies on adults with CP, to examine their content using the ICF as a reference, and to demonstrate the most studied areas in this population., Method: Embase, MEDLINE, Web of Science, PsycINFO, CINAHL, Cochrane, and Google Scholar were searched for studies on adults with CP published between 2000 and 2017. Meaningful concepts of commonly used outcome measures were linked to the ICF, and frequencies of resultant ICF categories were explored., Results: In 274 included articles, 332 outcome measures were identified of which 155 were commonly used. In total, 4409 meaningful concepts were linked to the ICF. The component 'Activities and participation' included the most frequent categories, followed by 'Body functions'. The most frequent categories were b280 'Sensation of pain' (37.6%), d450 'Walking' (33.3%), and d850 'Remunerative employment' (27.5%)., Interpretation: The broad range of ICF categories identified in this systematic review emphasizes the heterogeneity of functioning and disability in adults with CP. The current results specifically reflect the researchers' perspective and will serve as candidate categories to consider in the development of an ICF Core Set for adults with CP., What This Paper Adds: Outcomes studied in adults with cerebral palsy are captured in varying International Classification of Functioning, Disability and Health (ICF) categories. Activities and participation were studied more frequently than body functions and structures. Mobility, employment, and self-care were most frequent within ICF's 'Activities and participation' component. Pain and neuromusculoskeletal and movement-related functions were most frequent within 'Body functions'., (© 2019 Mac Keith Press.)

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.

Aim: To determine the long-term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age., Method: One hundred and fifty-one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I-IV; without intellectual disability). The Assessment of Life Habits questionnaire 3.0 general short form was used up to three times biennially and at 13-year follow-up (13-year follow-up: n=98). Scores (range 0-10) reflect difficulty and assistance in participation in housing, education and employment, interpersonal relationships, recreation, community life, and responsibilities. Multilevel models were used to determine the course of difficulty in participation by GMFCS level., Results: Despite high average participation levels, 41% to 95% of adolescents and young adults with CP experienced difficulty. Difficulty in participation in housing and interpersonal relationships increased from age 16 years onwards and in most other life areas in the mid- and late 20s. In adolescents in GMFCS levels III and IV, participation in recreation and community life improved up to age 23 years., Interpretation: Individuals with CP experience increasing difficulties in participation in their mid- and late 20s. Clinicians should systematically check for participation difficulties in young adults with CP and offer timely personalized treatment., What This Paper Adds: Many individuals with cerebral palsy (CP) aged 16 to 34 years experience difficulty in participation. Difficulty in participation increases in the mid- and late 20s for individuals with CP. Participation in recreation/community life improves before age 23 years for those in Gross Motor Function Classification System levels III and IV., (© 2018 The Authors Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

: media-1vid110.1542/5804911840001PEDS-VA&#95;2017-3723 Video Abstract OBJECTIVES: Describe development curves of motor and daily activity performance in individuals with cerebral palsy (CP)., Methods: Participants with CP aged 1 to 20 years at baseline ( n = 421) and Gross Motor Functioning Classification System (GMFCS) levels I to V (27% of participants with intellectual disability [ID]) were longitudinally assessed up to a 13-year follow-up period. Motor and daily activity performance were assessed using the relevant subdomains of the Vineland Adaptive Behavior Scales survey. Nonlinear mixed effects analyses were used, estimating the limit (average maximal performance level) and the age by which individuals reached 90% of the limit (age 90 )., Results: Limits of motor performance decreased with each lower functional level. Age 90 for motor performance was reached at ∼6 to 8 years of age in children with GMFCS levels I to III, and at younger ages in those with lower functional levels. Limits of daily activity performance did not differ between individuals without ID with GMFCS levels I to III. The age 90 s of daily activities were reached between 11 and 14 (personal), 26 and 32 (domestic), and 22 and 26 years of age (community). Individuals with ID reached lower daily activity performance limits earlier., Conclusions: Individuals with CP continue to develop motor performance after gross motor capacity limits are reached. For those without ID, daily activities continue to develop into their 20s. Individuals who are severely affected functionally have the least favorable development of motor performance, and those with ID have the least favorable development of daily activity performance., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

Objective: To determine neurological outcome in children and youth with acquired brain injury (ABI) and explore associated factors., Design: Cross-sectional study, two-years post-injury., Patients: Hospital-based sample (n=112) aged 6-22 years., Methods: Neurological outcome and participation were assessed with a multidimensional neurological examination and the Child and Adolescent Scale of Participation. Logistic regression analyses were used to explore the relationships., Results: Both sensorimotor and cognitive deficits were found in 30-31%, language deficits and behavioural deficits in 10-17%. Non-traumatic injury had a negative impact on neurological outcome, specifically regarding sensorimotor and language deficits. Lower education level showed a significantly poorer neurological outcome. High levels of age-expected participation were reported, with a significant relation between deficits and participation restrictions, especially at school., Conclusion: One out of three have a poor neurological outcome, related to type of injury and lower level of education. The amount of deficits is associated with participation restrictions.

Objective: To describe longitudinal change in perceived health, presence of health issues, and functional level in adults with cerebral palsy (CP)., Design: Prospective cohort study., Setting: Participants' daily environment., Participants: Adults (N=49) with CP (age range, 35-45y; 27 [55%] men; 36 [75%] spastic) formerly known in pediatric rehabilitation care participated., Interventions: Not applicable., Main Outcome Measures: Postal questionnaires were completed by the adults or their proxies (n=9). Health outcomes included perceived health (adapted from the 36-Item Short Form Health Survey) and presence of health issues such as pain, severe fatigue (dichotomized), and functional level (Barthel Index; walking performance)., Results: Over a 10-year period, the percentage of adults with CP worrying about their health increased (29%-54%; P=.008) and those indicating that health problems limit their activities increased (19%-45%; P=.002). In the same period, most adults continued to report good general health (93%-86%; P=.148). Presence of some health issues increased over time, such as pain; severe fatigue was a common health issue at follow-up (32%). Over a 14-year period, mobility and self-care deteriorated (Barthel Index, 17.1±4.8 to 16.3±5.6; P=.007). Walking performance, specifically indoors, declined (83%-71%; P=.010)., Conclusions: Adults with CP experienced deterioration in health outcomes in the long term. Most notably, perceived health and functional level decreased. Pain and severe fatigue were the most common health issues in adult CP. More research is required to explore the mechanisms at work in the process of aging in persons with CP. Systematic follow-up of adults with CP appears necessary to timely detect and intervene in health problems and functional decline., (Copyright © 2017 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)