Health Issues and Participation in Adults with Cerebral Palsy

Cerebral palsy (CP) is defined as a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing foetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems. The permanent and complex nature of CP and the risk of developing secondary conditions imply that persons with CP will face health issues and participation restrictions throughout life. Therefore, it is necessary to study each life phase. However, in contrast to CP in childhood, CP in adulthood is scarcely studied. The main aim of this thesis is to improve our insight into health issues and participation amongst adults with spastic CP, and to identify targets for prevention and treatment of both health problems and participation restrictions

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 fo

Cardiovascular disease risk in adults with spastic bilateral cerebral palsy

Objective: To explore: (i) cardiovascular disease risk factors and the 10-year clustered risk of a fatal cardiovascular event in adults with spastic bilateral cerebral palsy; and (ii) relationships between the 10-year risk and body fat, aerobic fitness and physical activity. Design: Cross-sectional study. Subjects: Forty-three adults with spastic bilateral cerebral palsy without severe cognitive impairment (mean age 36.6 years (standard deviation 6); 27 men). Methods: Biological and lifestyle-related risk factors and the 10-year risk according to the Systematic Coronary Risk Evaluation (SCORE) were assessed. Relationships were studied using multivariable linear regression analysis. Results: The following single risk factors were present: hypertension (n = 12), elevated total cholesterol (n = 3), low high-density lipoprotein cholesterol (n = 5; all men), high-risk waist circumference (n = 11), obesity (body mass index; n = 5; all men), reduced aerobic fitness (on average 80% of reference values), reduced level of everyday physical activity (on average 78% of reference values) and smoking (n=9). All participants had a 10-year risk <1%. Corrected for gender, participants with higher waist circumference (β = 0.28; p = 0.06) or body mass index (β=0.25; p = 0.08) tended to have a higher 10-year risk. Conclusion: In this relatively young adult sample of people with spastic bilateral cerebral palsy several single cardiovascular disease risk factors were present. The 10-year fatal cardiovascular disease risk was low, and higher body fat tended to be related to higher 10-year risk

Learn 2 Move 16-24: Effectiveness of an intervention to stimulate physical activity and improve physical fitness of adolescents and young adults with spastic cerebral palsy; a randomized controlled trial

Background: Persons with cerebral palsy (CP) are at risk for developing an inactive lifestyle and often have poor fitness levels, which may lead to secondary health complications and diminished participation and quality of life. However, persons with CP also tend not to receive structural treatment to improve physical activity and fitness in adolescence, which is precisely the period when adult physical activity patterns are established.Methods: We aim to include 60 adolescents and young adults (16-24 ye

Health-related physical fitness of ambulatory adolescents and young adults with spastic cerebral palsy

OBJECTIVE: To describe in detail the health-related physical fitness of adolescents and young adults with cerebral palsy, compared with able-bodied references, and to assess differences related to Gross Motor Functioning Classification System (GMFCS) level and distribution of cerebral palsy. DESIGN: Cross-sectional. SUBJECTS: Fifty ambulatory persons with spastic cerebral palsy, GMFCS level I or II, aged 16–24 years. METHODS: Physical fitness measures were: (i) cardiopulmonary fitness by maximal cycle ergometry, (ii) muscle strength, (iii) body mass index and waist circumference, (iv) skin-folds, and (v) lipid profile. RESULTS: Regression analyses, corrected for age and gender, showed that persons with bilateral cerebral palsy had lower cardiopulmonary fitness and lower hip abduction muscle strength than those with unilateral cerebral palsy. Comparisons between persons with GMFCS levels I and II showed a difference only in peak power during cycle ergometry. Cardiopulmonary fitness, hip flexion and knee extension strength were considerably lower (< 75%) in persons with cerebral palsy than reference values. CONCLUSION: The distribution of cerebral palsy affects fitness more than GMFCS level does. Furthermore, adolescents and young adults with cerebral palsy have reduced health-related physical fitness compared with able-bodied persons. This stage of life has a strong influence on adult lifestyle, thus it is an important period for intervention

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 descri

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 rehabilitation Except for those in the highest level of motor function, young adults with cerebral palsy report higher levels of pain and fatigue compared to the general population of the same age. Pain and fatigue are strongly interrelated and associated with mental health in young adults with cerebral palsy. The present study recommends to monitor pain and fatigue in young adults with cerebral palsy with low levels of gross motor function. We advise rehabilitation professionals to consider combined treatment for both pain and fatigue

Low bone mineral density in ambulatory persons with cerebral palsy? A systematic review

Purpose: Non-ambulatory persons with cerebral palsy are prone to low bone mineral density. In ambulatory persons with cerebral palsy, bone mineral density deficits are expected to be small or absent, but a consensus conclusion is lacking. In this systematic review bone mineral density in ambulatory persons with cerebral palsy (Gross Motor Function Classification Scales I–III) was studied. Materials and methods: Medline, Embase, and Web of Science were searched. According to international guidelines, low bone mineral density was defined as Z-score ≤ −2.0. In addition, we focused on Z-score ≤ −1.0 because this may indicate a tendency towards low bone mineral density. Results: We included 16 studies, comprising 465 patients aged 1–65 years. Moderate and conflicting evidence for low bone mineral density (Z-score ≤ −2.0) was found for several body parts (total proximal femur, total body, distal femur, lumbar spine) in children with Gross Motor Function Classification Scales II and III. We found no evidence for low bone mineral density in children with Gross Motor Function Classification Scale I or adults, although there was a tendency towards low bone mineral density (Z-score ≤ −1.0) for several body parts. Conclusions: Although more high-quality research is needed, results indicate that deficits in bone mineral density are not restricted to non-ambulatory people with cerebral palsy.Implications for Rehabilitation Although more high-quality research is needed, including adults and fracture risk assessment, the current study indicates that deficits in bone mineral density are not restricted to non-ambulatory people with CP. Health care professionals should be aware that optimal nutrition, supplements on indication, and an active lifestyle, preferably with weight-bearing activities, are important in ambulatory people with CP, also from a bone quality point-of-view. If indicated, medication and fall prevention training should be prescribed

Detection of body postures and movements in ambulatory adults with cerebral palsy: a novel and valid measure of physical behaviour

BACKGROUND: Accurate measurement of physical behaviour is paramount to better understand lifestyle, health, and functioning, particularly in adults with physical disability as they may be at higher risk of sedentary lifestyle and subsequent negative health consequences. This study aimed: 1) to evaluate the criterion validity of a novel and clinically applicable activity monitor (AM, Activ8), in the detection of body postures and movements in adults with spastic cerebral palsy (CP); and 2) to evaluate the extent that the AM's positioning affects validity. METHODS: In this cross-sectional study, 14 ambulatory adults with CP [9 men; mean (SD) age, 35.4 (13.1) years] performed standardized activities while wearing three Activ8 monitors - frontolateral thigh (primary position), frontal thigh, and pant pocket - and being video recorded (criterion measure). AM activity output was compared to synchronized video recordings. Absolute (seconds) and relative [(video time-AM time)/mean time, %] time differences between methods were calculated. Relative time differences of < 10% were indicative of good validity. Comparison of AM attachment positions was completed using Spearman Rho correlation coefficients and Meng's tests. RESULTS: Criterion validity of the AM (frontolateral thigh) was good (average relative time differences: 0.25% for sitting, 4.69% for standing, 2.46% for walking, 1.96% for upright activity, 3.19% for cycling), except for running (34.6%). Spearman Rho correlation coefficients were greater between video/frontolateral thigh position than video/frontal thigh position and video/pant pocket position for body posture and movement categories sitting, standing, walking, and upright activity (p < 0.01 for all). CONCLUSIONS: The AM, positioned on the frontolateral thigh, demonstrated good criterion validity in ambulatory adults with CP. Though the Activ8 offers potential as an objective measure of physical activity, appropriate positioning is paramount for valid measurement

Multimorbidity risk assessment in adolescents and adults with cerebral palsy: a protocol for establishing a core outcome set for clinical research and practice

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