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AIM: To explore whether subgroups of adults with cerebral palsy (CP) with different fatigue diurnal profiles can be discerned, and to explore whether sleep, physical activity, or health-related fitness are associated with these profiles. METHOD: Thirty-two adults (median age 29 years 8 months; range 20-54 years; 11 males, 21 females) with spastic CP (Gross Motor Function Classification System levels I-III) with physical activity-related fatigue complaints participated. Real-time fatigue and physical activity were assessed for 7 consecutive days by short message service text four times during the day and by wearing an accelerometer respectively. Sleep was assessed by the Pittsburgh Sleep Quality Index, and fitness by assessing body composition and aerobic capacity. Latent class growth modelling was used to classify subgroups according to their diurnal profiles of real-time fatigue. Univariable multinomial logistic regression analysis explored whether participant characteristics, sleep, physical activity, or health-related fitness were associated with diurnal profiles. RESULTS: Three distinct fatigue diurnal profiles were identified: stable low (n = 10), increasing (n = 14), and stable high (n = 8). Only aerobic capacity was associated with fatigue profiles (odds ratio 1.15, 95% confidence interval 1.00-1.34; p = 0.05). INTERPRETATION: Fatigue in adults with CP may be low or high stable or may increase during the day. These findings indicate the relevance of assessing fatigue variability. WHAT THIS PAPER ADDS: We found three patterns of daily fatigue in adults with cerebral palsy (CP). Only aerobic capacity was associated with fatigue profiles in adults with CP. Moment-to-moment variations in fatigue can help with personalized fatigue management.
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Parálisis Cerebral , Aptitud Física , Masculino , Femenino , Humanos , Adulto , Ejercicio Físico , Fatiga , SueñoRESUMEN
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.
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Parálisis Cerebral , Personas con Discapacidad , Actividades Cotidianas , Adolescente , Adulto , Parálisis Cerebral/diagnóstico , Niño , Consenso , Evaluación de la Discapacidad , Humanos , Organización Mundial de la SaludRESUMEN
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.
UM DESFECHO CENTRAL DEFINIDO PARA RISCO DE MULTIMORBIDADE EM INDIVÍDUOS COM PARALISIA CEREBRAL: OBJETIVO: (1) Investigar a importância dos instrumentos de medição de desfechos (IMD) dentro de um conjunto de desfechos principais (CDS) para risco de multimorbidade (pelo menos duas condições crônicas de saúde) em indivíduos com paralisia cerebral (PC); (2) Investigar a viabilidade de IMD dentro do CDS em cenários internacionais de pesquisa clínica em adolescentes e adultos com PC; e (3) Descrever as associações entre os dados do CDS e os níveis do Sistema de Classificação da Função Motora Grossa (GMFCS). MÉTODO: Oitenta e três indivíduos com PC completaram uma pesquisa sobre desfechos em saúde: comportamento físico, nutrição, sono, resistência, composição corporal, pressão arterial, lipídios no sangue e glicose. Um estudo transversal avaliou a viabilidade do COS em 67 adolescentes e adultos com PC (idade média de 30 anos, desvio padrão de 15 anos e 1 mês, min-max: 14-68 anos, 52,2% do sexo masculino) em quatro centros. São descritas a prevalência do risco de multimorbidade e as associações com os níveis de GMFCS. RESULTADOS: A maioria dos participantes classificou o comportamento físico, nutrição, sono e resistência como muito importantes. Composição corporal, pressão arterial, nutrição e sono foram altamente viáveis, uma vez que os dados foram coletados em 88% ou mais dos participantes que consentiram em realizar as avaliações. Comportamento físico, resistência cardiorrespiratória e coleta de sangue foram coletados em menos de 60% dos participantes. O tempo total de sedentarismo (ρ = 0,53, p < 0,01) e resistência (ρ = −0,46, p < 0,01) foram significativamente associados ao nível de GMFCS. INTERPRETAÇÃO: O CDS identificou que a maioria dos participantes tinha má qualidade e resistência do sono, não tinha dietas saudáveis e apresentava um comportamento sedentário aumentado. Indivíduos com PC valorizaram esses desfechos como mais importantes, sugerindo a necessidade de avaliar esses comportamentos modificáveis nessa população. Medidas objetivas de comportamento físico e resistência cardiorrespiratória no CDS exigiram pessoal adicional, tempo e sobrecarga do participante. Recomendamos que os profissionais de saúde realizem uma primeira triagem mais simples usando avaliações baseadas em questionários e, em seguida, concentrem o uso do restante do CDS, se necessário para o paciente.
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Parálisis Cerebral , Adolescente , Adulto , Parálisis Cerebral/epidemiología , Estudios Transversales , Femenino , Humanos , Masculino , Multimorbilidad , Evaluación de Resultado en la Atención de Salud , Conducta SedentariaRESUMEN
AIM: To determine if pain is associated with 12-month incidence of mood affective disorders (MAD) in adults with cerebral palsy (CP). METHOD: Data from Optum Clinformatics® Data Mart (2013-2016) were used for this retrospective cohort study. Diagnostic codes were used to identify adults (≥18y) with CP, incident cases of MAD, and covariates (other neurodevelopmental conditions, sleep disorders, arthritis). Pain (any type, location) was identified between 1st October 2014 and 30th September 2015. The pain group was divided into new or consistent pain if they had a history of pain (i.e. consistent) in the 12 months before their first pain claim date. Crude incidence rates of MAD (expressed per 100 person-years) were estimated. Cox regression was used to estimate hazard ratio (95% confidence interval [CI]) of MAD after adjusting for covariates. RESULTS: Adults that had new pain (n=859; incidence rate=15.5) or consistent pain (n=1303; incidence rate=17.9) had greater crude incidence rate of MAD compared to adults without pain (n=3726; incidence rate=5.9). The elevated rate of MAD remained after adjusting for covariates, for new pain (hazard ratio=2.4; 95% CI=1.9-3.0) and consistent pain (hazard ratio=2.1; 95% CI=1.7-2.7). INTERPRETATION: Pain is associated with greater incidence of MAD in adults with CP. This association remained after accounting for potential confounding factors. WHAT THIS PAPER ADDS: What this paper adds Pain was associated with higher 12-month incidence of mood affective disorders (MAD). The 12-month MAD incidence was similar between new and consistent pain groups. The MAD incidence remained higher adjusting for neurodevelopmental comorbidities, sleep disorders, and arthritis.
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Afecto , Parálisis Cerebral/epidemiología , Trastornos del Humor/epidemiología , Trastornos del Humor/psicología , Dolor/epidemiología , Adolescente , Adulto , Anciano , Parálisis Cerebral/complicaciones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Trastornos del Humor/complicaciones , Dolor/complicaciones , Estudios Retrospectivos , Adulto JovenRESUMEN
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.
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Parálisis Cerebral/complicaciones , Parálisis Cerebral/epidemiología , Parálisis Cerebral/fisiopatología , Evaluación de Resultado en la Atención de Salud , Adulto , HumanosRESUMEN
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'.
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Parálisis Cerebral/diagnóstico , Actividades Cotidianas , Parálisis Cerebral/clasificación , Evaluación de la Discapacidad , Humanos , Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud , Evaluación de Resultado en la Atención de SaludRESUMEN
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.
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Enfermedades Cardiovasculares/epidemiología , Parálisis Cerebral/epidemiología , Enfermedades Metabólicas/epidemiología , Adolescente , Adulto , Biomarcadores , Glucemia , Presión Sanguínea , Pesos y Medidas Corporales , Capacidad Cardiovascular , Dieta , Ejercicio Físico , Femenino , Humanos , Estilo de Vida , Lípidos/sangre , Masculino , Persona de Mediana Edad , Multimorbilidad , Factores de Riesgo , Sueño , Encuestas y Cuestionarios/normas , Adulto JovenRESUMEN
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.
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Parálisis Cerebral/fisiopatología , Parálisis Cerebral/psicología , Ejercicio Físico , Monitorización Neurofisiológica/métodos , Postura , Acelerometría , Adulto , Estudios Transversales , Personas con Discapacidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Espasticidad Muscular/etiología , Espasticidad Muscular/fisiopatología , Reproducibilidad de los Resultados , Carrera , Sedestación , Posición de Pie , Muslo , Grabación en Video , CaminataRESUMEN
AIM: To explore the course of employment in adults with cerebral palsy (CP) over 14 years, and to identify subgroups at risk for unemployment. METHOD: Sixty-five adults with CP (33 males, 32 females; baseline age 25y 8mo, standard deviation [SD] 3y 2mo; intellectual impairment 25%; bilateral CP 65%) participated in a prospective cohort study. Self-reports of employment and work hours per week in 1996, 2000, and 2010 were documented. The course of employment (including sheltered work) and work hours per week were analysed, using generalized estimating equations (GEE). RESULTS: Overall, employment rate was stable over time (38-45%, p=0.413), but lower than in the general population (75-86%, p<0.001). Employment rates were specifically low in adults with intellectual impairment, bilateral CP, and in adults with Gross Motor Function Classification System (GMFCS) levels IV and V. Work hours per week declined (35.0 [SD 7.9] to 31.2 [SD 10.3], p=0.033), especially among females (32.3 [SD 6.4] to 23.4 [SD 7.4], p<0.001). Similar to the general population, females often worked part-time. INTERPRETATION: Employment was low compared with the general population, but remained stable in the long term; however, work hours per week decreased. Adults with intellectual impairment, bilateral CP, and GMFCS levels IV and V are subgroups at risk for unemployment.
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Parálisis Cerebral , Empleo , Adulto , Parálisis Cerebral/complicaciones , Parálisis Cerebral/epidemiología , Parálisis Cerebral/psicología , Escolaridad , Empleo/psicología , Empleo/estadística & datos numéricos , Femenino , Estudios de Seguimiento , Humanos , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/epidemiología , Masculino , Persona de Mediana Edad , Países Bajos , Estudios Prospectivos , Riesgo , Autoinforme , Índice de Severidad de la Enfermedad , Factores de Tiempo , Adulto JovenRESUMEN
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.
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Parálisis Cerebral/fisiopatología , Parálisis Cerebral/psicología , Fatiga/fisiopatología , Dolor/fisiopatología , Percepción , Actividades Cotidianas , Adulto , Factores de Edad , Parálisis Cerebral/complicaciones , Fatiga/etiología , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Limitación de la Movilidad , Países Bajos , Dolor/etiología , Estudios Prospectivos , Calidad de Vida , Autocuidado , Factores Sexuales , Factores Socioeconómicos , Caminata/fisiologíaRESUMEN
OBJECTIVE: To gain insight into underlying mechanisms of inactive lifestyles among adults with spastic bilateral cerebral palsy (CP) with a focus on aerobic capacity, oxygen consumption, and physical strain during walking at preferred walking speed, as well as fatigue. DESIGN: Cross-sectional. SETTING: University hospital. PARTICIPANTS: Adults (N=36), aged 25 to 45 years, with spastic bilateral CP, walking with (n=6) or without (n=30) walking aids. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Physical strain during walking was defined as oxygen uptake during walking, expressed as percentage of peak aerobic capacity. Participants with spastic bilateral CP walked their preferred walking speed while oxygen uptake was measured using a portable gas analyzer. Peak aerobic capacity was measured during maximal cycle ergometry. An accelerometry-based activity monitor measured total daily walking time. Regression analyses were performed to assess the relation between aerobic capacity, oxygen uptake, and physical strain of walking on the one hand and total daily walking time on the other hand. RESULTS: Neither aerobic capacity nor oxygen uptake during walking was related to total daily walking time (r(2)=.29, P=.10 and r(2)=.27, P=.16, respectively). Physical strain of walking at preferred walking speed was inversely related to total daily walking time (r(2)=.44, P<.01). CONCLUSIONS: Physical strain during walking is moderately related to total daily walking time, implying that people with high physical strain during walking at preferred walking speed likely walk less in daily life.
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Parálisis Cerebral/fisiopatología , Consumo de Oxígeno , Aptitud Física/fisiología , Caminata/fisiología , Acelerometría , Adulto , Estudios Transversales , Tolerancia al Ejercicio , Fatiga/etiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Actividad Motora , Análisis de Regresión , Conducta SedentariaRESUMEN
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.
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Rehabilitación Vocacional , Desempleo , Humanos , Adulto Joven , Rehabilitación Vocacional/métodos , Empleo , Autoeficacia , Estado de Salud , Enfermedad CrónicaRESUMEN
AIM: To investigate the prevalence and co-occurrence of chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy (SBCP) and explore associations of chronic pain and fatigue with depressive symptoms and daily functioning. METHOD: Fifty-six adults with SBCP without severe cognitive impairment participated (35 males, 21 females; mean age 36y 5mo, SD 5y 10mo; Gross Motor Function Classification System level I [13], II [28], III [11], IV [4]). Chronic pain (>3mo), severity and nature of fatigue (Fatigue Severity Scale; Multidimensional Fatigue Inventory), and depressive symptoms (Center for Epidemiological Studies Depression Scale) were assessed. Associations were explored using multivariable logistic regression analyses. RESULTS: The study sample had a higher prevalence of chronic pain (75% vs 39%; p<0.001), mean fatigue (Fatigue Severity Scale, 4.4 [SD 1.3] vs 2.9 [SD 1.1]; p<0.001), and prevalence of depressive symptoms (25% vs 12%; p=0.004) than Dutch healthy reference samples. Chronic pain and severe fatigue co-occurred in 34% and in combination with depressive symptoms in 16% of the participants. Severity of fatigue was associated with depressive symptoms (OR 3.38; p<0.01). Chronic pain and fatigue were not associated with limitations in daily functioning. INTERPRETATION: These findings suggest that adults with SBCP are severely affected by chronic pain, fatigue, and depressive symptoms, in addition to their spastic paresis.
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Parálisis Cerebral/psicología , Dolor Crónico/psicología , Trastorno Depresivo/psicología , Fatiga/psicología , Dolor Musculoesquelético/epidemiología , Dolor Musculoesquelético/psicología , Actividades Cotidianas/clasificación , Actividades Cotidianas/psicología , Adulto , Parálisis Cerebral/diagnóstico , Parálisis Cerebral/epidemiología , Dolor Crónico/diagnóstico , Dolor Crónico/epidemiología , Comorbilidad , Estudios Transversales , Trastorno Depresivo/diagnóstico , Trastorno Depresivo/epidemiología , Evaluación de la Discapacidad , Fatiga/epidemiología , Femenino , Humanos , Masculino , Países Bajos , Examen Neurológico , Aptitud FísicaRESUMEN
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 (nâ≥â10, ageâ≥â18 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 140/90âmmHg 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 124.9âmmHg [95% confidence interval (CI) 121.7-128.1] and overall mean DBP was 79.9âmmHg (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 40âyears 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.
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Parálisis Cerebral , Hipertensión , Adolescente , Adulto , Consumo de Bebidas Alcohólicas , Antihipertensivos/farmacología , Presión Sanguínea , Parálisis Cerebral/complicaciones , Parálisis Cerebral/epidemiología , Femenino , Humanos , Hipertensión/complicaciones , Hipertensión/epidemiología , Masculino , Adulto JovenRESUMEN
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.
Asunto(s)
Parálisis Cerebral , Dolor , Adulto , Parálisis Cerebral/complicaciones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Dolor/epidemiología , Dolor/etiología , Prevalencia , Adulto JovenRESUMEN
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 years) with spastic CP. Participants will be randomly assigned to an intervention group or a control group (no treatment; current policy). The intervention will last 6 months and consist of three parts; 1) counselling on daily physical activity; 2) physical fitness training; and 3) sports advice. To evaluate the effectiveness of the intervention, all participants will be measured before, during, directly after, and at 6 months following the intervention period. Primary outcome measures will be: 1) physical activity level, which will be measured objectively with an accelerometry-based activity monitor during 72 h and subjectively with the Physical Activity Scale for Individuals with Physical Disabilities; 2) aerobic fitness, which will be measured with a maximal ramp test on a bicycle or armcrank ergometer and a 6-minute walking or wheelchair test; 3) neuromuscular fitness, which will be measured with handheld dynamometry; and 4 body composition, which will be determined by measuring body mass, height, waist circumference, fat mass and lipid profile. CONCLUSIONS: This paper outlines the design, methodology and intervention of a multicenter randomized controlled trial (LEARN 2 MOVE 16-24) aimed at examining the effectiveness of an intervention that is intended to permanently increase physical activity levels and improve fitness levels of adolescents and young adults with CP by achieving a behavioral change toward a more active lifestyle. TRIAL REGISTRATION: Dutch Trial Register; NTR1785.
Asunto(s)
Actividades Cotidianas , Parálisis Cerebral/terapia , Consejo/métodos , Terapia por Ejercicio/métodos , Actividad Motora , Aptitud Física , Adolescente , Femenino , Estudios de Seguimiento , Humanos , Masculino , Método Simple Ciego , Factores de Tiempo , Resultado del Tratamiento , Adulto JovenRESUMEN
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.
Asunto(s)
Parálisis Cerebral/epidemiología , Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud/normas , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Encuestas y CuestionariosRESUMEN
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.
Asunto(s)
Densidad Ósea , Parálisis Cerebral , Osteoporosis , Fracturas Osteoporóticas , Caminata/fisiología , Parálisis Cerebral/metabolismo , Parálisis Cerebral/fisiopatología , Parálisis Cerebral/rehabilitación , Humanos , Osteoporosis/etiología , Osteoporosis/prevención & control , Fracturas Osteoporóticas/etiología , Fracturas Osteoporóticas/prevención & controlRESUMEN
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.
Asunto(s)
Parálisis Cerebral/terapia , Multimorbilidad , Evaluación de Resultado en la Atención de Salud , Medición de Riesgo , Adolescente , Adulto , Investigación Biomédica , Técnica Delphi , Humanos , Tamaño de la MuestraRESUMEN
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.