Cardiac rehabilitation for patients with obesity: lessons learned from the OPTICARE XL trial.

Obesity is a known and commonly encountered risk factor for the development of cardiac diseases. Patients with cardiac diseases who also have obesity do not benefit optimally from standard cardiac rehabilitation (CR) programs. Exercises performed during CR are not the best fit for patients with obesity and counselling sessions often do not address their specific needs. OPTICARE XL is the first large multicentre randomised controlled trial to investigate the added value of a dedicated one-year CR program specifically designed for patients with obesity and integrated in daily practice. The short-term effects on body weight and physical activity were promising and patients with obesity experienced the program as highly desirable. However, the OPTICARE XL CR program did not show long-term added value compared with standard CR on health-related quality of life, psychosocial well-being, body weight, physical activity and physical fitness, nor on costs. The current article offers an overview of the background of this trial and discusses the most important results of the OPTICARE XL trial and the reasons behind the unanticipated long-term outcomes. Furthermore, it offers recommendations for future research and how to redesign the OPTICARE XL CR program to expand the short-term results.

Effects of a Dedicated Cardiac Rehabilitation Program for Patients With Obesity on Body Weight, Physical Activity, Sedentary Behavior, and Physical Fitness: The OPTICARE XL Randomized Controlled Trial.

OBJECTIVE: Previously published results of the OPTICARE XL open label randomized controlled trial showed no added value of OPTICARE XL CR, a dedicated cardiac rehabilitation (CR) program for patients with obesity, with respect to health-related quality of life (primary outcome). This clinical trial studied the effects of OPTICARE XL CR on several secondary outcomes, which included body weight, physical activity, sedentary behavior, and physical fitness. METHODS: Patients with coronary artery disease or atrial fibrillation and body mass index ≥ 30 were randomized to OPTICARE XL CR (n = 102) or standard CR (n = 99). OPTICARE XL CR was a 1-year group intervention, specifically designed for patients with obesity that included aerobic and strength exercise, behavioral coaching, and an aftercare program. Standard CR consisted of a 6- to 12-week group aerobic exercise program, supplemented with cardiovascular lifestyle education. Study end points included body weight, physical activity, sedentary behavior (accelerometer), and physical fitness (6-Minute Walk Test and handgrip strength), which were evaluated 6 months after the end of CR (primary endpoint) and 3 months after the start of CR. RESULTS: Six months after completion of either program, improvements in body weight, physical activity, sedentary behavior, and physical fitness were similar between the groups. Three months after CR start, patients randomized to OPTICARE XL CR showed greater weight loss (mean change = -3.6 vs -1.8 kg) and a larger improvement in physical activity (+880 vs +481 steps per day) than patients randomized to standard CR. CONCLUSION: Patients allocated to OPTICARE XL CR lost significantly more body weight and showed promising results with respect to physical activity 3 months after the start of CR; however, these short-term results were not expanded or sustained in the longer term. IMPACT: Patients with obesity do not benefit from standard CR programs. The new OPTICARE XL CR program showed its effects in the short term on weight loss and physical activity, and, therefore, redesign of the aftercare phase is recommended.

End-of-life decisions and involvement of Physical and Rehabilitation Medicine Physicians in Europe.

OBJECTIVE: As Physical and Rehabilitation Medicine physicians are experts in functional prognoses of disabling health conditions, the aim of this study was to gain insight into their involvement in end-of-life decisions in patients with neurological or terminal diseases in European countries. DESIGN: Exploratory cross-sectional survey. SUBJECTS: Delegates of the Union of European Medical Specialists, Physical and Rehabilitation Medicine Section. METHODS: In July 2020, a self-constructed survey was sent to 82 delegates from 38 European countries, who were asked to answer from the point of view of their country. Topics included the legal status of end-of-life decisions and the involvement of Physical and Rehabilitation Medicine physicians in these decisions. RESULTS: Between July 2020 and December 2020, 32 delegates from 28 countries completed the survey (response rate country level of 74%). If legal frameworks allow for these specific end-of-life decisions, involvement of Physical and Rehabilitation Medicine physicians was reported in 2 of 3 countries in euthanasia cases, 10 of 17 countries in non-treatment decision cases, and 13 of 16 countries in cases of intensified symptom management by the administration of drugs using potentially life-shortening doses. CONCLUSION: Estimated involvement of Physical and Rehabilitation Medicine physicians in end-of-life decisions varied between European countries, even when legal frameworks allow for these decisions.

Cardiac rehabilitation designed for patients with obesity: OPTICARE XL RCT results on health-related quality of life and psychosocial well-being.

Purpose We studied the effectiveness of a new cardiac rehabilitation (CR) program developed for patients with obesity compared with standard CR on HRQOL and psychosocial well-being.Materials and methods OPTICARE XL was a multicentre RCT in patients with cardiac disease and obesity (Netherlands Trial Register: NL5589). Patients were randomized to OPTICARE XL CR (n = 102) or standard CR (n = 99). The one-year OPTICARE XL CR group program included endurance and resistance exercises, behavioural coaching, and after-care. Standard CR consisted of a 6- to 12-week endurance exercise group program, and cardiovascular lifestyle education. Primary endpoint was HRQOL (MacNew) at six months post CR. Second, we assessed anxiety and depression (both HADS), fatigue (FSS), and participation in society (USER-P).Results In both groups, improvements in HRQOL were observed six months post CR. Mean HRQOL improved from 4.92 to 5.40 in standard CR [mean change (95% CI): 0.48 (0.28, 0.67)] and from 4.96 to 5.45 in OPTICARE XL CR (mean change (95% CI): 0.49 (0.29, 0.70), without between-group differences. Psychosocial well-being improvements within both groups were obtained at six months post CR, regardless of allocated program.Conclusions OPTICARE XL CR did not have added value in improving HRQOL and psychosocial well-being in patients with obesity.Implications for rehabilitationMore than a third of cardiac patients suffers from obesity, and standard cardiac rehabilitation (CR) programs are suboptimal in this increasing patient population.The OPTICARE XL CR program is a state-of-the art, one-year CR program designed for patients with obesity including aerobic and strength exercises, behavioural coaching towards a healthy diet and an active lifestyle, and after-care.Improvements in HRQOL and psychosocial well-being were comparable between patients with obesity allocated to standard CR and OPTICARE XL CR.Therefore, there was no additional benefit of OPTICARE XL CR.

Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy.

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.

Blood pressure in adults with cerebral palsy: a systematic review and meta-analysis of individual participant data.

OBJECTIVES: This systematic review and meta-analysis was designed to determine the overall mean blood pressure and prevalence of hypertension among a representative sample of adults living with cerebral palsy by combining individual participant data. Additional objectives included estimating variations between subgroups and investigating potential risk factors for hypertension. METHODS: Potential datasets were identified by literature searches for studies published between January 2000 and November 2017 and by experts in the field. Samples of adults with cerebral palsy (n ≥ 10, age ≥ 18 years) were included if blood pressure data, cerebral palsy-related factors (e.g. cerebral palsy subtype), and sociodemographic variables (e.g. age, sex) were available. Hypertension was defined as at least 140/90 mmHg and/or use of antihypertensive medication. RESULTS: We included data from 11 international cohorts representing 444 adults with cerebral palsy [median (IQR) age of the sample was 29.0 (23.0-38.0); 51% men; 89% spastic type; Gross Motor Function Classification System levels I-V]. Overall mean SBP was 124.9 mmHg [95% confidence interval (CI) 121.7-128.1] and overall mean DBP was 79.9 mmHg (95% CI 77.2-82.5). Overall prevalence of hypertension was 28.7% (95% CI 18.8-39.8%). Subgroup analysis indicated higher blood pressure levels or higher prevalence of hypertension in adults with cerebral palsy above 40 years of age, men, those with spastic cerebral palsy or those who lived in Africa. BMI, resting heart rate and alcohol consumption were risk factors that were associated with blood pressure or hypertension. CONCLUSION: Our findings underscore the importance of clinical screening for blood pressure in individuals with cerebral palsy beginning in young adulthood.

Physical Activity and Sedentary Behavior in Cardiac Rehabilitation: Does Body Mass Index Matter?

OBJECTIVE: The purpose of this study was to investigate the relationship between body mass index (BMI) class and physical activity and sedentary behavior in patients with acute coronary syndrome (ACS) during cardiac rehabilitation (CR). METHODS: This study was a secondary analysis of the OPTICARE trial. Physical activity and sedentary behavior were measured in participants with ACS (n = 359) using actigraphy at baseline, directly after completion of a multidisciplinary 12-week exercise-based CR program and 9 months thereafter. Outcome measures were step count and duration of time (percentage of wear time) spent in light physical activity, moderate-to-vigorous physical activity, and sedentary behavior. Participants were classified as normal weight (BMI = 18.5-24.99 kg/m2; n = 82), overweight (BMI = 25.0-29.99 kg/m2; n = 182), or obese (BMI ≥ 30.0 kg/m2; n = 95). Linear mixed-effects models were applied to study the relationship between BMI class and physical activity and sedentary behavior. RESULTS: At the start of CR, compared with participants with normal weight, participants with obesity made on average 1.11 steps fewer per minute (952 steps/d), spent 2.9% (25 min/d) less time in light physical activity, and spent 3.31% (28 min/d) more time in sedentary behavior. Participants of all BMI classes improved their physical activity and sedentary behavior levels similarly during CR, and these improvements were maintained after completion of CR. CONCLUSION: Participants with ACS who had obesity started CR with a less favorable physical activity and sedentary behavior profile than that of participants with normal weight. Because all BMI classes showed similar improvement during CR, this deficit was preserved. IMPACT: This study indicates that reconsideration of the CR program in the Netherlands for patients with ACS and obesity is warranted, and development of more inclusive interventions for specific populations is needed. A new program for people with obesity should include added counseling on increasing physical activity and preventing sedentary behavior to facilitate weight loss and reduce mortality risk. LAY SUMMARY: People with ACS who have obesity are less active and sit more than individuals with normal weight, both during and after CR. This study suggests that CR needs to be changed to help individuals increase their physical activity to help them lose weight and reduce their risk of death.

Entering the labor market: increased employment rates of young adults with chronic physical conditions after a vocational rehabilitation program.

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.

Health-related quality of life and cardiac rehabilitation: Does body mass index matter?

OBJECTIVE: To investigate the relation between body mass index class and changes in health-related quality of life in patients participating in cardiac rehabilitation. DESIGN: Prospective cohort study. PATIENTS: A total of 503 patients with acute coronary syndrome. METHODS: Data from the OPTICARE trial were used, in which health-related quality of life was measured with the MacNew Heart Disease HRQOL Instrument at the start, directly after, and 9 months after completion of cardiac rehabilitation. Patients were classed as normal weight, overweight, or obese. RESULTS: During cardiac rehabilitation, global health-related quality of life improved in patients in all classes of body mass index. Patients classed as overweight had a significantly greater improvement in social participation than those classed as normal weight (5.51-6.02 compared with 5.73-5.93, respectively; difference in change 0.30, p = 0.025). After completion of cardiac rehabilitation, health-related quality of life continued to improve similarly in patients in all classes of body mass index. CONCLUSION: Health-related quality of life improved during cardiac rehabilitation in patients of all classes of body mass index. Patients classed as overweight showed the greatest improvement. The beneficial effects were maintained during extended follow-up after completion of cardiac rehabilitation.

Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors.

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.

The role of botulinum toxin in multimodal treatment of spasticity in ambulatory children with spastic Cerebral Palsy: extensive evaluation of a cost-effectiveness trial.

BACKGROUND: A cost-effectiveness trial (the Space Bop study) on the added value of botulinum toxin injections (BoNT-A) in the leg muscles, as part of a multimodal intervention for ambulatory children with spastic cerebral palsy in the context of a single distinct cycle of care was performed recently by our group. For a broad set of effect outcomes, we found that BoNT-A had no added value if children received comprehensive rehabilitation. However, this counterintuitive finding was met with scepticism. OBJECTIVE: Since several noteworthy facts and experiences were recorded during the course of the trial and the dissemination phase, the aim of this paper was to describe and discuss some crucial aspects of, and barriers to, the Space Bop study, related to context and perspective, design and results, as well as publication and implementation. METHODS: This paper discusses 5 issues: (i) the design, interpretation and presentation of previous research; (ii) the role of one's own clinical experience and interpretation; (iii) the aims of (BoNT-A) treatment; (iv) conflict of interest, role of industry, and the role of history; (v) optimal treatment modalities and dose-response relationships. CONCLUSION: Despite the unambiguous findings from the Space Bop study, several factors hindered acceptance of the results. Awareness of these factors is important when performing rehabilitation research and disseminating and implementing research findings.

Covid-19 and Post Intensive Care Syndrome: A Call for Action.

Although we are currently overwhelmed by the astonishing speed of infection of the Covid-19 pandemic, and the daily onslaught of new, and ever-worsening predictions, it is vital that we begin to prepare for the aftershocks of the pandemic. Prominent among this will be the cohort of post-intensive case survivors who have been mechanically ventilated and will like experience short- and medium-term consequences. The notion that patients surviving intensive care and mechanical ventilation for several weeks can be discharged home without further medical attention is a dangerous illusion. Post Intensive Care Syndrome and other severe conditions will require not only adequate screening but early rehabilitation and other interventions. Action must be taken now to prepare for this inevitable aftershock to the healthcare system.

Epidemiology of Cerebral Palsy in Adulthood: A Systematic Review and Meta-analysis of the Most Frequently Studied Outcomes.

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.

Effect of different operationalizations of sedentary behavior in people with chronic stroke.

Purpose: Sedentary behavior is common in people with stroke and has devastating impact on their health. Quantifying it is important to provide people with stroke with adequate physical behavior recommendations. Sedentary behavior can be quantified in terms of posture (sitting) or intensity (low energy expenditure). We compared the effect of different operationalizations of sedentary behavior on sedentary behavior outcomes (total time; way of accumulation) in people with stroke.Methods: Sedentary behavior was analyzed in 44 people with chronic stroke with an activity monitor that measured both body postures and movement intensity. It was operationalized as: (1) combining postural and intensity data; (2) using only postural data; (3) using only intensity data. For each operationalization, we quantified a set of outcomes. Repeated measures ANOVA and Bland-Altman plots were used to compare the operationalizations.Results: All sedentary behavior outcomes differed significantly between all operationalizations (p < 0.01). Bland-Altman plots showed large limits of agreement for all outcomes, showing large individual differences between operationalizations.Conclusions: Although it was neither possible nor our aim to investigate the validity of the two-component definition of sedentary behavior, our study shows that the type of operationalization of sedentary behavior significantly influences sedentary behavior outcomes in people with stroke.Implications for RehabilitationReliable assessment of sedentary behavior after stroke is important in order to provide adequate physical behavior recommendations for people with stroke.Sedentary behavior can be operationalized in terms of body posture (sitting time) or in terms of movement intensity (time <1.5 MET) or as a combination of both criteria; this study reveals that the type of operationalization affects the different outcome measures used to quantify sedentary behavior.Comparing sedentary behavior outcomes requires caution and should only be done when sedentary behavior is operationalized in the same way.

Energy Conservation Management for People With Multiple Sclerosis-Related Fatigue: Who Benefits?

OBJECTIVE: We investigated whether demographic, disease-related, or personal baseline determinants can predict a positive response to energy conservation management (ECM). METHOD: We conducted a secondary analysis of a single-blind, two-parallel-arms randomized controlled trial that included ambulatory adults with severe MS-related fatigue. Therapy responders and nonresponders were categorized by Checklist Individual Strength fatigue change scores between baseline and end of treatment. Logistic regression analyses were used to assess the determinants of response. RESULTS: Sixty-nine participants were included (ECM group, n = 34; control group, n = 35). In the ECM group, fatigue severity, perception of fatigue, illness cognitions about MS, and social support discrepancies were related to the probability of being a responder. CONCLUSION: The results suggest that people with MS-related fatigue who had a less negative perception of fatigue and who perceived fewer disease benefits and a higher discrepancy in social support had the best response to ECM treatment.

A secondary analysis of data from the OPTICARE randomized controlled trial investigating the effects of extended cardiac rehabilitation on functional capacity, fatigue, and participation in society.

OBJECTIVE: In this secondary analysis of data from the OPTICARE trial, we compared the effects of two behavioral interventions integrated into cardiac rehabilitation to standard rehabilitation with regard to functional capacity, fatigue, and participation in society. DESIGN: This is a randomized controlled trial. SETTING: This study was conducted in a cardiac rehabilitation setting. SUBJECTS: A total of 740 patients with acute coronary syndrome were recruited for this study. INTERVENTIONS: Patients were randomized to (1) three months of standard rehabilitation; (2) cardiac rehabilitation plus nine months after-care with face-to-face group lifestyle counseling; or (3) cardiac rehabilitation plus nine months after-care with individual lifestyle telephone counseling. MAIN MEASURES: Functional capacity (6-minute walk test), fatigue (Fatigue Severity Scale), and participation in society (Utrecht Scale for Evaluation of Rehabilitation-Participation) were measured at randomization, 3, 12, and 18 months. RESULTS: Additional face-to-face sessions resulted at 12 months in 12.49 m more on the 6-minute walk test compared to standard rehabilitation (P = .041). This difference was no longer present at 18 months. Prevalence of fatigue decreased from 30.2% at baseline to 11.9% at 18 months compared to an improvement from 37.3% to 24.9% after standard rehabilitation (between-group difference: odds ratio = 0.47; P = .010). The additional improvements in functional capacity seemed to be mediated by increases in daily physical activity. No mediating effects were found for fatigue. No additional improvements were seen for participation in society. Additional telephonic sessions did not result in additional intervention effects. CONCLUSION: Extending cardiac rehabilitation with a face-to-face behavioral intervention resulted in additional long-term improvements in fatigue and small improvements in functional capacity up to 12 months. A telephonic behavioral intervention provided no additional benefits.

Outcomes in adults with cerebral palsy: systematic review using the International Classification of Functioning, Disability and Health.

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'.

Physical behaviour is weakly associated with physical fatigue in persons with multiple sclerosis-related fatigue.

BACKGROUND: Fatigue affects 80% of persons with multiple sclerosis and is associated with daily physical functioning. Both fatigue and physical behaviour are multidimensional concepts. OBJECTIVE: To study the association between the dimensions of physical behaviour and multiple sclerosis-related fatigue. METHODS: Cross-sectional analysis of 212 persons with multiple sclerosis. Participants were severely fatigued, with a Fatigue Severity Scale median (interquartile range): 5.4 (4.8-5.9) and were minimally to moderately neurologically impaired, based on the Expanded Disability Status Scale: 2.5 (2.0-3.5), 73% had relapsing-remitting multiple sclerosis. Fatigue was measured by questionnaires (i.e. Checklist Individual Strength, Modified Fatigue Impact Scale), and the dimensions subjective, physical, cognitive and psychological fatigue were distinguished. Physical behaviour was measured using an Actigraph GT3X+, and outcomes were categorized into the dimensions of activity amount, activity intensity, day pattern, and distribution of activities. RESULTS: The physical behaviour dimensions were significantly associated with only the physical fatigue dimension (omnibus F-test: 3.96; df1 = 4, df2 = 207; p = 0.004). Additional analysis showed that the amount of activity (unstandardized beta coefficient (ß) = -0.16; 95% confidence interval (CI) -0.27 to -0.04; p = 0.007), activity intensity (ß = -0.18; 95% CI -0.31 to -0.06; p = 0.004) and day pattern of activity (ß = -0.17; 95% CI, -0.28 to -0.06; p = 0.002) were the physical behaviour dimensions that were significantly associated with physical fatigue. CONCLUSION: Physical behaviour is weakly associated with physical fatigue and is not associated with other dimensions of fatigue.