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BACKGROUND: Patient experiences with COVID-19 aftercare remain largely unknown. We evaluated COVID-19 aftercare from a patient perspective one year after hospitalization, assessing satisfaction and its associated factors, and unmet needs. METHODS: The Satisfaction with COVID-19 Aftercare Questionnaire (SCAQ) was developed as part of a multicenter prospective cohort study and administered one year after hospital discharge. The SCAQ assesses (1) patient satisfaction, comprising information provision, rehabilitation, follow-up by hospitals and general practitioners (GPs), the most important aftercare topics, and overall satisfaction, and (2) unmet needs. RESULTS: 487/561 (87%) COVID-19 patients completed the SCAQ, all had been discharged from the hospital between March 2020 and May 2021. Among responders, the median age of patients was 60 (IQR 54-67) years, 338 (69%) were male, and the median length of stay in the hospital was 13 (6-27) days. Patients were least satisfied with information on who could be contacted with questions when health problems arise (59% satisfied or very satisfied). Many patients (75%) received rehabilitation, most frequently community-based (70%). Across the different community-based therapies, ≥ 60% of patients were satisfied with shared-decision making and ≥ 70% with the received therapy; a majority (≥ 79%) indicated a preference for receiving the same therapy again if needed. Regarding follow-up by hospitals, 86% of patients received this follow-up, most frequently visiting a pulmonologist (96%), being generally satisfied with the received aftercare. Aftercare from GPs was received by 39% of patients, with 88% being satisfied with the GP's availability and 79% with referral to appropriate aftercare providers. Patients (> 50%) considered information-related items most important in aftercare. Overall, patients rated their satisfaction with aftercare 8/10 (7-9) points. Those who received medical rehabilitation (versus no rehabilitation, adjusted beta 0.61 [95%CI 0.11 to 1.11], p = 0.02) or aftercare by a hospital medical specialist (1.1 [0.46 to 1.64], p < 0.001) or GP (0.39 [0.053 to 0.72], p = 0.023) reported significantly higher satisfaction than those without such aftercare. Unmet needs were reported by 35% of patients, with lack of information (20%) and lack of additional aftercare and/or involvement of their GP (19%) being the most frequently reported. CONCLUSION: Despite the forced quick development of COVID-19 aftercare, patients were generally satisfied. Follow-up by healthcare professionals and information provision is important to meet patients' aftercare needs.
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Assistência ao Convalescente , COVID-19 , Feminino , Humanos , Masculino , COVID-19/terapia , Hospitalização , Satisfação do Paciente , Estudos Prospectivos , Pessoa de Meia-Idade , IdosoRESUMO
STUDY DESIGN: Longitudinal cohort study. OBJECTIVES: Examine the longitudinal association between mobility and level of physical activity (PA) and explore which other factors are also associated with level of PA in ambulatory people with Spinal Cord Injury (SCI) during the first-year post-inpatient rehabilitation. SETTING: Three SCI-specialized rehabilitation centers and the Dutch community. METHODS: Forty-seven adults with recent SCI and ambulatory function were included. All had motor incomplete lesions, 49% had tetraplegia, and the mean age was 55 ± 13 years. Duration of accelerometry-based all-day PA and self-reported level of mobility, exertion of walking, pain, fatigue, depressive mood symptoms, fear of falling, exercise self-efficacy, and attitude toward PA were measured just before discharge from inpatient rehabilitation and 6 and 12 months after discharge. All data were longitudinally analyzed using generalized estimating equations analyses. Models were corrected for age, lesion level, and time since injury. RESULTS: Mobility was longitudinally associated with level of PA (beta: 4.5, P < 0.001, R2: 41%). In addition, lower levels of exertion of walking (beta: -5.6, P < 0.001), fear of falling (beta: -34.1, P < 0.001), and higher levels of exercise self-efficacy (beta: 2.3, P = 0.038) were associated with higher levels of PA. Exertion of walking and fear of falling were associated with level of PA independent of mobility. CONCLUSIONS: Mobility, exertion of walking, fear of falling, and exercise self-efficacy seem to be correlates of level of PA in ambulatory people with SCI during the first year after inpatient rehabilitation. Targeting these factors using an interdisciplinary approach may enhance levels of PA in this population.
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Exercício Físico , Traumatismos da Medula Espinal , Humanos , Traumatismos da Medula Espinal/reabilitação , Traumatismos da Medula Espinal/psicologia , Pessoa de Meia-Idade , Masculino , Feminino , Estudos Longitudinais , Exercício Físico/fisiologia , Adulto , Pacientes Internados , Idoso , Autoeficácia , Caminhada/fisiologia , Acelerometria , Centros de ReabilitaçãoRESUMO
STUDY DESIGN: Secondary analysis of cross-sectional data from the ALLRISC cohort study. OBJECTIVES: To investigate the prevalence of obesity and its association with time since injury (TSI) and physical activity (PA) in wheelchair users with long-standing (TSI > 10 years) spinal cord injury (SCI). SETTING: Community, The Netherlands. METHODS: Wheelchair users with SCI (N = 282) in TSI strata (10-19, 20-29, and ≥30 years) and divided in meeting SCI-specific exercise guidelines or not. Waist circumference (WC) and body mass index (BMI) were assessed. Participants were classified as being obese (WC > 102 cm for men, WC > 88 cm for women; BMI ≥ 25 kg/m2) or not. Logistic regression analyses were performed to investigate the associations between obesity and TSI and PA. RESULTS: Almost half of the participants (45-47%) were classified as obese. TSI was significantly associated with obesity, the odds of being obese were 1.4 higher when having a 10 years longer TSI. Furthermore, the odds of being obese were 2.0 lower for participants who were meeting the exercise guidelines. CONCLUSIONS: The prevalence of obesity is high in people with long-standing SCI. Those with a longer TSI and individuals who do not meet the exercise guidelines are more likely to be obese and need to be targeted for weight management interventions.
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Exercício Físico , Obesidade , Traumatismos da Medula Espinal , Cadeiras de Rodas , Humanos , Traumatismos da Medula Espinal/epidemiologia , Traumatismos da Medula Espinal/complicações , Masculino , Feminino , Obesidade/epidemiologia , Exercício Físico/fisiologia , Adulto , Pessoa de Meia-Idade , Prevalência , Estudos Transversais , Fatores de Tempo , Países Baixos/epidemiologia , Estudos de Coortes , Índice de Massa Corporal , Adulto JovemRESUMO
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.
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BACKGROUND: People with a low socioeconomic position (SEP) are less likely to benefit from eHealth interventions, exacerbating social health inequalities. Professionals developing eHealth interventions for this group face numerous challenges. A comprehensive guide to support these professionals in their work could mitigate these inequalities. OBJECTIVE: We aimed to develop a web-based guide to support professionals in the development, adaptation, evaluation, and implementation of eHealth interventions for people with a low SEP. METHODS: This study consisted of 2 phases. The first phase involved a secondary analysis of 2 previous qualitative and quantitative studies. In this phase, we synthesized insights from the previous studies to develop the guide's content and information structure. In the second phase, we used a participatory design process. This process included iterative development and evaluation of the guide's design with 11 professionals who had experience with both eHealth and the target group. We used test versions (prototypes) and think-aloud testing combined with semistructured interviews and a questionnaire to identify design requirements and develop and adapt the guide accordingly. RESULTS: The secondary analysis resulted in a framework of recommendations for developing the guide, which was categorized under 5 themes: development, reach, adherence, evaluation, and implementation. The participatory design process resulted in 16 requirements on system, content, and service aspects for the design of the guide. For the system category, the guide was required to have an open navigation strategy leading to more specific information and short pages with visual elements. Content requirements included providing comprehensible information, scientific evidence, a user perspective, information on practical applications, and a personal and informal tone of voice. Service requirements involved improving suitability for different professionals, ensuring long-term viability, and a focus on implementation. Based on these requirements, we developed the final version of "the inclusive eHealth guide." CONCLUSIONS: The inclusive eHealth guide provides a practical, user-centric tool for professionals aiming to develop, adapt, evaluate, and implement eHealth interventions for people with a low SEP, with the aim of reducing health disparities in this population. Future research should investigate its suitability for different end-user goals, its external validity, its applicability in specific contexts, and its real-world impact on social health inequality.
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Telemedicina , Voz , Humanos , Disparidades nos Níveis de SaúdeRESUMO
BACKGROUND: Fatigue is one of the most commonly reported symptoms after subarachnoid hemorrhage (SAH) and is indirectly associated with physical activity (PA). Associations between fatigue and PA are primarily examined based on conventional measures (i.e. a single fatigue score or average PA levels), thereby assuming that fatigue and PA do not fluctuate over time. However, levels of fatigue and PA may not be stable and may interrelate dynamically in daily life. Insight in direct relationships between fatigue and PA in daily life, could add to the development of personalized rehabilitation strategies. Therefore we aimed to examine bidirectional relationships between momentary fatigue and PA in people with SAH. METHODS: People (n = 38) with SAH who suffer from chronic fatigue were included in an observational study using Ecological Momentary Assessment (EMA) and accelerometry. Momentary fatigue was assessed on a scale from 1 to 7 (no to extreme fatigue), assessed with 10-11 prompts per day for 7 consecutive days using EMA with a mobile phone. PA was continuously measured during this 7-day period with a thigh-worn Activ8 accelerometer and expressed as total minutes of standing, walking, running and cycling in a period of 45 min before and after a momentary fatigue prompt. Multilevel mixed model analyses including random effects were conducted. RESULTS: Mean age was 53.2 years (SD = 13.4), 58% female, and mean time post SAH onset was 9.5 months (SD = 2.1). Multilevel analyses with only time effects to predict fatigue and PA revealed that fatigue significantly (p < 0.001) increased over the day and PA significantly (p < 0.001) decreased. In addition, more PA was significantly associated with higher subsequent fatigue (ß = 0.004, p < 0.05) and higher fatigue was significantly associated with less subsequent PA (ß=-0.736, p < 0.05). Moreover, these associations significantly differed between participants (p < 0.001). CONCLUSIONS: By combining EMA measures of fatigue with accelerometer-based PA we found that fatigue and PA are bidirectionally associated. In addition, these associations differ among participants. Given these different bidirectional associations, rehabilitation aimed at reducing fatigue should comprise personalized strategies to improve both fatigue and PA simultaneously, for example by combining exercise therapy with cognitive behavioral and/or energy management therapy.
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Avaliação Momentânea Ecológica , Hemorragia Subaracnóidea , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Hemorragia Subaracnóidea/complicações , Exercício Físico , Terapia por Exercício , AcelerometriaRESUMO
BACKGROUND: First studies indicate that up to 6 months after hospital discharge, coronavirus disease 2019 (COVID-19) causes severe physical, cognitive, and psychological impairments, which may affect participation and health-related quality of life (HRQoL). After hospitalization for COVID-19, a number of patients are referred to medical rehabilitation centers or skilled nursing facilities for further treatment, while others go home with or without aftercare. The aftercare paths include 1] community-based rehabilitation; 2] in- and outpatient medical rehabilitation; 3] inpatient rehabilitation in skilled nursing facilities; and 4] sheltered care (inpatient). These aftercare paths and the trajectories of recovery after COVID-19 urgently need long-term in-depth evaluation to optimize and personalize treatment. CO-FLOW aims, by following the outcomes and aftercare paths of all COVID-19 patients after hospital discharge, to systematically study over a 2-year period: 1] trajectories of physical, cognitive, and psychological recovery; 2] patient flows, healthcare utilization, patient satisfaction with aftercare, and barriers/facilitators regarding aftercare as experienced by healthcare professionals; 3] effects of physical, cognitive, and psychological outcomes on participation and HRQoL; and 4] predictors for long-term recovery, health care utilization, and patient satisfaction with aftercare. METHODS: CO-FLOW is a multicenter prospective cohort study in the mid-west of the Netherlands with a 2-year follow-up period. Measurements comprise non-invasive clinical tests and patient reported outcome measures from a combined rehabilitation, pulmonary, and intensive care perspective. Measurements are performed at 3, 6, 12, and 24 months after hospital discharge and, if applicable, at rehabilitation discharge. CO-FLOW aims to include at least 500 patients who survived hospitalization for COVID-19, aged ≥18 years. DISCUSSION: CO-FLOW will provide in-depth knowledge on the long-term sequelae of COVID-19 and the quality of current aftercare paths for patients who survived hospitalization. This knowledge is a prerequisite to facilitate the right care in the right place for COVID-19 and comparable future infectious diseases. TRIAL REGISTRATION: The Netherlands Trial Register (NTR), https://www.trialregister.nl . Registered: 12-06-2020, CO-FLOW trialregister no. NL8710.
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Assistência ao Convalescente , COVID-19 , Adolescente , Adulto , Hospitais , Humanos , Estudos Multicêntricos como Assunto , Alta do Paciente , Satisfação do Paciente , Estudos Prospectivos , Qualidade de Vida , SARS-CoV-2 , Resultado do TratamentoRESUMO
OBJECTIVE: To evaluate changes in duration of physical activity (PA) and sedentary behavior (SB) from discharge to 1 year after inpatient rehabilitation in ambulatory people with spinal cord injury (SCI). DESIGN: Longitudinal cohort study with objective measurements of physical behavior at discharge and at 6 and 12 months post discharge. SETTING: Three rehabilitation centers and the participant's home environment. PARTICIPANTS: Participants (N=47) with ambulatory function were consecutively recruited from the self-management and self-efficacy in patients with SCI cohort (age 18 years or older, recent SCI, expected inpatient stay ≥4wk). Mean age was 54.5±12.9 years, all had incomplete lesions, 53% were men, 49% had tetraplegia, and 51% were community ambulators at discharge. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Duration (min) of PA (summed duration of walking, cycling, running, and wheeling) and SB (sitting/lying). RESULTS: Mean duration of PA increased by 21 min/d (95% confidence interval, 7-35) and SB decreased by 64 min/d (95% confidence interval, -94 to -35) from discharge to 6 months after inpatient rehabilitation. No changes were found in the second half-year. One year after discharge mean PA was 116±59 min/d and mean SB was 665±121 min/d. The increase in PA was the result of an almost doubling of time spent walking. Variability in physical behavior and its change was large. Older age and lower ambulation level were associated with lower PA, lower ambulation level with higher SB, and tetraplegia was associated with a reduced increase in PA. CONCLUSIONS: At group level, duration of PA and SB improved following inpatient rehabilitation in ambulatory people with SCI. However, there were large differences between individuals. Levels 1 year after discharge were still unfavorable, particularly regarding SB.
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Exercício Físico/psicologia , Comportamento Sedentário , Traumatismos da Medula Espinal/psicologia , Fatores de Tempo , Caminhada/psicologia , Adulto , Assistência ao Convalescente/psicologia , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Alta do Paciente , Quadriplegia/fisiopatologia , Quadriplegia/psicologia , Quadriplegia/reabilitação , Centros de Reabilitação , Traumatismos da Medula Espinal/fisiopatologia , Traumatismos da Medula Espinal/reabilitaçãoRESUMO
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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Paralisia Cerebral/diagnóstico , Atividades Cotidianas , Paralisia Cerebral/classificação , Avaliação da Deficiência , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Avaliação de Resultados em Cuidados de SaúdeRESUMO
AIM: To describe active and sedentary time in children with spina bifida and to compare their physical activity on weekdays versus weekends. METHOD: In this exploratory cross-sectional study, data from 13 Canadian and 22 Dutch children with spina bifida (14 females, 21 males; mean age 10y 11mo, standard deviation [SD] 3y 6mo, range 5y 6mo-18y; Hoffer classification distribution: community [n=28], household [n=3], non-functional [n=3], and non-ambulator [n=1]) were analysed. Objective measures of physical activity and sedentary behaviour were obtained by using ActiGraph or Actiheart activity monitors. Data for the participants wearing the ActiGraph were compared with age- and sex-matched controls that were developing typically using independent-samples t-tests. Activity data collected on weekdays was compared to those on weekends. RESULTS: ActiGraph data demonstrated children with spina bifida spent more time sedentary (mean [SD] 49.5min/h [5.78]) and less time in moderate to vigorous physical activity (mean [SD] 2.33min/h [1.61]) compared with the typically developing group (mean [SD] 41.0min/h [5.76] and 5.46min/h [2.13], p=0.001 and p<0.001 respectively). For both ActiGraph- and Actiheart-derived data, physical activity and sedentary time were not significantly different between weekdays and weekends. INTERPRETATION: Children with spina bifida have reduced levels of physical activity and increased sedentary behaviour, with no statistical differences seen between weekdays and weekends. Several methodological issues related to activity monitoring warrant consideration when choosing the appropriate method to quantify physical activity and sedentary behaviour. WHAT THIS PAPER ADDS: Reduced levels of physical activity and sedentary time were quantified in children with spina bifida. Objective quantification of physical behaviour in ambulatory and non-ambulatory school-aged children with spina bifida is possible.
ACTIVIDAD FÍSICA Y COMPORTAMIENTO SEDENTARIO EN NIÑOS CON ESPINA BÍFIDA: OBJETIVO: Describir el tiempo activo y sedentario en niños con espina bífida y comparar su actividad física entre semana y fines de semana. MÉTODO: En este estudio exploratorio de corte transversal, datos de 13 niños canadienses y 22 holandeses con espina bífida (14 mujeres, 21 varones; edad media 10 años 11 meses, desviación estándar [DE] 3 años 6 meses, rango 5 años 6 meses - 18 años; se analizaron en base a la distribución basada en la clasificación de Hoffer: comunidad [n = 28], hogar [n = 3], no funcional [n = 3] y no ambulatorios [n = 1]). Se obtuvieron medidas objetivas de actividad física y comportamiento sedentario mediante el uso de monitores de actividad ActiGraph o Actiheart. Los datos de los participantes que usaban el ActiGraph se compararon con los niños con desarrollo típicos como controles, apareados por edad y sexo usando pruebas t de muestras independientes. Los datos de actividad recopilados durante la semana se compararon con los de los fines de semana. RESULTADOS: Los datos de ActiGraph demostraron que los niños con espina bífida pasaron más tiempo sedentarios (media [DE] 49,5min / h [5,78]) y menos tiempo en actividades físicas moderadas a intensas (media [DE] 2,33min / h [1,61]) en comparación con el grupo control (media [DE] 41,0min / h [5,76] y 5,46min / h [2,13], p = 0,001 y p <0,001 respectivamente). Tanto para los datos derivados de ActiGraph como de Actiheart, la actividad física y el tiempo sedentario no fueron significativamente diferentes entre semana y fines de semana. INTERPRETACIÓN: Los niños con espina bífida tienen niveles reducidos de actividad física y un mayor comportamiento sedentario, sin diferencias estadísticas observadas entre semana y fines de semana. Al elegir un método apropiado para cuantificar la actividad física y el comportamiento sedentario se deben considerar varios problemas metodológicos relacionados con el monitoreo de la actividad en esta población.
ATIVIDADE FÍSICA E COMPORTAMENTO SEDENTÁRIO EM CRIANÇAS COM ESPINHA BÍFIDA: OBJETIVO: Descrever o tempo ativo e sedentário de crianças com espinha bífida e comparar sua atividade física durante a semana versus fins de semana. MÉTODO: Neste estudo exploratório transversal, dados de 13 crianças canadenses e 22 crianças holandesas com espinha bífida (14 do sexo feminino, 21 do sexo masculino; médida de idade 10a 11m, desvio padrão [DP] 3a 6m, variação 5a 6m-18a; Distribuição da classificação de Hoffer: comunidade [n=28], domiciliar [n=3], não funcional [n=3], e não ambulatório [n=1]) foram analisados. Medidas objetivas de atividade física e comportamento sedentário foram obtidas por meio de monitores de atividade ActiGraph ou Actiheart. Dados para os participantes que usaram ActiGraph foram comparados com controles pareados por idade e sexo que tinha desenvolvimento típico usando testes t para amostras independentes. Dados de atividade coletados durante a semana foram comparados com os dados de finais de semana. RESULTADOS: Os dados do ActiGraph demonstraram que crianças com espinha bífida passaram mais tempo sedentário (média [DP] 49,5min/h [5,78]) e menos tempo em atividade física vigorosa (média [DP] 2,33min/h [1,61]) comparados com o grupo com desenvolvimento típico (média [DP] 41,0min/h [5,76] e 5,46min/h [2,13], p=0,001 and p<0,001 respectivamente). Para os dados derivados do ActiGraph- e Actiheart, a atividade física e o tempo sedentário não foram significativamente diferentes comparando os dias da semana com os fins de semana. INTERPRETAÇÃO: Crianças com espinha bífida têm níveis reduzidos de atividade física e comportamento sedentário aumentado, sem diferenças estatísticas quando comparados os dias da semana. Várias questões metodológicas relacionadas ao monitoramento de atividades indicam necessidade de refletir quanto à escolha do método apropriado para quantificar a ativiade física e comportamento sedentário.
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Crianças com Deficiência/estatística & dados numéricos , Exercício Físico , Limitação da Mobilidade , Comportamento Sedentário , Disrafismo Espinal , Actigrafia , Adolescente , Canadá , Criança , Pré-Escolar , Estudos Transversais , Eletrocardiografia Ambulatorial , Exercício Físico/fisiologia , Feminino , Humanos , Masculino , Países BaixosRESUMO
BACKGROUND: Even though typically developing youth are already at risk for physical inactivity, youth with spina bifida may be even at higher risk as a consequence of their reduced mobility. No objective data is available for youth with spina bifida who use a manual wheelchair, so the seriousness of the problem is unknown. The purpose of this observational study was to quantify physical activity in wheelchair-using youth with spina bifida and evaluate the intensity of activities. METHODS: Fifty-three children and adolescents (5-19 years) with spina bifida who use a manual wheelchair for daily life, long distances or sports were included. To assess time spent in several types of activities VitaMove data of 34 participants were used and were presented as time spent sedentary and time spent physically active. This was compared to reference data of typically developing youth. To assess time spent in several intensities Actiheart data of 36 participants were used. The intensities were categorized according to the American College of Sports Medicine, ranging from very light intensity to near to maximal intensity. Data of 25 participants were used to combine type of activity and intensity. RESULTS: Children and adolescents with spina bifida who use a manual wheelchair were more sedentary (94.3% versus 78.0% per 24 h, p < 0.000) and less physically active (5.0% versus 12.2% per 24 h, p < 0.000) compared to typically developing peers. Physical activity during weekend days was worse compared to school days; 19% met the Guidelines of Physical Activity during school days and 8% during weekend days. The intensities per activity varied extensively between participants. CONCLUSIONS: Children and adolescents with spina bifida who use a manual wheelchair are less physically active and more sedentary than typically developing youth. The physical activity levels on school days seem to be more favorable than the physical activity levels on a weekend day. The low levels of physical activity need our attention in pediatric rehabilitation practice. The different intensities during activities indicate the importance of individually tailored assessments and interventions.
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Crianças com Deficiência/estatística & dados numéricos , Exercício Físico , Disrafismo Espinal , Cadeiras de Rodas , Adolescente , Criança , Feminino , Humanos , MasculinoRESUMO
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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Paralisia Cerebral/fisiopatologia , Paralisia Cerebral/psicologia , Exercício Físico , Monitorização Neurofisiológica/métodos , Postura , Acelerometria , Adulto , Estudos Transversais , Pessoas com Deficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Espasticidade Muscular/etiologia , Espasticidade Muscular/fisiopatologia , Reprodutibilidade dos Testes , Corrida , Postura Sentada , Posição Ortostática , Coxa da Perna , Gravação em Vídeo , CaminhadaRESUMO
BACKGROUND: Since physical activity and exercise levels are known to be generally low in persons with spinal cord injury (SCI), there seems to be a need for intervention. Exercise self-efficacy (ESE), the confidence persons have in their ability to be physically active and exercise, is an important and modifiable predictor of physical behavior. The goal of this study was to 1) describe ESE in persons with subacute SCI, 2) to assess ESE in subgroups based on demographic and lesion characteristics, and 3) to explore the relation between ESE and physical behavior and physical capacity. METHODS: Thirthy-seven persons with subacute SCI who are wheelchair dependent participated. Participants completed the Exercise Self-Efficacy Scale. We recorded age and lesion characteristics, measured physical behavior (physical activity, motility and sedentary day time, n = 35) with an accelerometer-based activity monitor and measured physical capacity (peak power output, n = 28 and peak oxygen uptake, n = 24) during a maximal hand-cycling test. Measurements were performed 2 months prior to discharge from inpatient rehabilitation. Mann-Whitney tests were used to test for differences between subgroups based on age and lesion characteristics and spearman correlations were used to assess the relation between ESE and physical activity and physical capacity. RESULTS: Persons with tetraplegia had lower ESE compared to persons with paraplegia (Z = -1.93, p = 0.05). No differences in ESE were found between subgroups based on age and motor completeness of the lesion. In persons with paraplegia, ESE was positively related to peak power output (ρ = 0.58, p = 0.02). The relation of ESE with wheeled physical activity was ρ = 0.36, p = 0.09. CONCLUSIONS: In persons with SCI who are dependent on a manual wheelchair, lesion level when categorized as paraplegic and tetraplegic affected ESE whereas age categories and completeness categories did not. Persons with tetraplegia were found to have lower confidence with regard to physical activity and exercise indicating that this subgroup can benefit from extra attention in the promotion of physical activity and exercise. In persons with paraplegia, ESE seemed to be lower in persons with less peak power output and less daily physical activity.
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Paraplegia/psicologia , Personalidade , Quadriplegia/psicologia , Traumatismos da Medula Espinal/psicologia , Traumatismos da Medula Espinal/reabilitação , Feminino , Humanos , Pacientes Internados , Masculino , Pessoa de Meia-Idade , Paraplegia/etiologia , Paraplegia/reabilitação , Quadriplegia/etiologia , Quadriplegia/reabilitação , Cadeiras de RodasRESUMO
OBJECTIVES: Various mechanisms, such as immune dysregulation, viral reservoir, and auto-immunity, are hypothesized to underlie the pathogenesis of long-term health problems after hospitalization for COVID-19. We aimed to assess the effect of in-hospital COVID-19 treatments on prominent long-term health problems. METHODS: In this prospective multicenter cohort study, we enrolled patients (age ≥18 years) who had been hospitalized for COVID-19 in the Netherlands between July 2020 and October 2021. We retrospectively collected data on in-hospital COVID-19 treatments, including steroid, anti-inflammatory, and antiviral treatments. Patients completed questionnaires on self-reported recovery, dyspnea, fatigue, cognitive failures, and health-related quality of life and performed the 6-minute walk test at the 2-year follow-up visit. RESULTS: Five hundred two patients with COVID-19 were included, all were discharged from the hospital between March 2020 and June 2021. The median age at admission was 60.0 (IQR 53.0-68.0) years and 350 (69.7%) patients were male. At hospital admission, 5/405 (1.2%) of the patients had been vaccinated against SARS-CoV-2. Among all 502 patients, the majority (248 [49.4%]) received steroids only, 57 (11.4%) anti-inflammatory treatment, 78 (15.5%) antiviral treatment, and 119 (23.7%) none during hospitalization. Long-term health problems were common in all groups. We found that in-hospital treatments were not significantly associated with health problems at 2 years after hospital discharge, nor after adjusting for confounders. CONCLUSION: Many patients with COVID-19 suffer from long-term health problems 2 years after hospital discharge. Acute treatment for COVID-19 is not associated with long-term health problems.
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COVID-19 , Feminino , Humanos , Masculino , Anti-Inflamatórios , Antivirais/uso terapêutico , Estudos de Coortes , Tratamento Farmacológico da COVID-19 , Hospitalização , Estudos Prospectivos , Qualidade de Vida , Estudos Retrospectivos , SARS-CoV-2 , Pessoa de Meia-Idade , IdosoRESUMO
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.
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Reabilitação Cardíaca , Humanos , Reabilitação Cardíaca/métodos , Qualidade de Vida , Exercício Físico , Terapia por Exercício , ObesidadeRESUMO
OBJECTIVE: To examine the daily course of, and factors associated with, momentary fatigue after subarachnoid haemorrhage, and to explore subgroups of patients with distinct diurnal patterns of fatigue. DESIGN: Observational study using ecological momentary assessment. SUBJECTS: A total of 41 participants with subarachnoid haemorrhage. METHODS: Patients with fatigue were included within one year post-onset. Momentary fatigue (scale 1-7) was assessed with repeated measurements (10-11 times/day) during 7 consecutive days. Multilevel-mixed-model analyses and latent-class trajectory modelling were conducted. RESULTS: Mean (standard deviation; SD) age of the group was 53.9 (13.0) years, 56% female, and mean (SD) time post-subarachnoid haemorrhage onset was 9.3 (3.2) months. Mean (SD) momentary fatigue over all days was 3.22 (1.47). Fatigue increased significantly (p < 0.001) over the day, and experiencing more burden of fatigue and day type (working day vs weekend day) were significantly (p < 0.05) associated with higher momentary fatigue. Three subgroups could be distinguished based on diurnal patterns of fatigue. The largest group (n = 17, 41.5%) showed an increasing daily pattern of fatigue. CONCLUSION: Momentary fatigue in patients with subarachnoid haemorrhage increases over the day, and diurnal patterns of fatigue differ between participants. In addition to conventional measures, momentary measures of fatigue might provide valuable information for physicians to optimize personalized management of fatigue after subarachnoid haemorrhage.
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Avaliação Momentânea Ecológica , Hemorragia Subaracnóidea , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fadiga/etiologia , Hemorragia Subaracnóidea/complicações , Adulto , IdosoRESUMO
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.
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Reabilitação Cardíaca , Humanos , Reabilitação Cardíaca/métodos , Comportamento Sedentário , Qualidade de Vida , Força da Mão , Exercício Físico , Obesidade , Peso Corporal , Aptidão Física , Redução de PesoRESUMO
PURPOSE: To evaluate physical fitness and its association with fatigue in patients with low grade glioma (LGG). METHODS: Cross-sectional study. Muscle strength was measured with a digital dynamometer, cardiorespiratory fitness (peak oxygen uptake (VO2peak), maximal workload (MWL)) by cardiopulmonary-exercise-testing, and fatigue by using the Multidimensional Fatigue Inventory. RESULTS: Thirty patients were included, mean age of 44.1 (SD11.2) years, and 67% were men, 31.2 (SD18) months post-diagnosis. Muscle strength (p < 0.01), and cardiorespiratory fitness (VO2peak, MWL) (p < 0.01) were significantly decreased compared to predicted values based on age and gender. Thirty percent of the patients experienced severe physical fatigue, and severe mental fatigue was reported in 57% of the patients. Cardiorespiratory fitness showed weak to moderate (r - 0.46 to r - 0.52) but significant (p < 0.01) correlations with physical fatigue, not with mental and general fatigue. Muscle strength was not associated with fatigue. A lower VO2peak was independently associated with a higher level of physical fatigue, adjusted for Karnofsky Performance Status (R2 0.40). CONCLUSIONS: Physical fitness (muscle strength, cardiorespiratory fitness) is reduced in patients with LLG, and a lower level of cardiorespiratory fitness (VO2peak) is independently associated with a higher level of experienced physical fatigue. Trials to explore the benefit of exercise programs to improve cardiorespiratory fitness and, consequently, fatigue are warranted.Implications for rehabilitationPhysical fitness (muscle strength and cardiorespiratory fitness) is reduced in patients with low-grade glioma.Patients with low-grade glioma should be screened for fatigue with the multidimensional fatigue inventory, to differentiate between mental and physical fatigue.Patients with low-grade glioma with severe physical fatigue should be screened for reduced physical fitness, especially cardiorespiratory fitness by objective cardiopulmonary-exercise-testing.Rehabilitation exercise programs to improve cardiorespiratory fitness and, consequently, (physical) fatigue could be warranted in patients with low-grade glioma.
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Glioma , Consumo de Oxigênio , Masculino , Humanos , Adulto , Feminino , Estudos Transversais , Consumo de Oxigênio/fisiologia , Aptidão Física/fisiologia , Força Muscular/fisiologia , Teste de Esforço/métodos , Glioma/complicaçõesRESUMO
Background: Many patients with SARS-CoV-2 infection develop long COVID with fatigue as one of the most disabling symptoms. We performed clinical and immune profiling of fatigued and non-fatigued long COVID patients and age- and sex-matched healthy controls (HCs). Methods: Long COVID symptoms were assessed using patient-reported outcome measures, including the fatigue assessment scale (FAS, scores ≥22 denote fatigue), and followed up to one year after hospital discharge. We assessed inflammation-related genes in circulating monocytes, serum levels of inflammation-regulating cytokines, and leukocyte and lymphocyte subsets, including major monocyte subsets and senescent T-lymphocytes, at 3-6 months post-discharge. Results: We included 37 fatigued and 36 non-fatigued long COVID patients and 42 HCs. Fatigued long COVID patients represented a more severe clinical profile than non-fatigued patients, with many concurrent symptoms (median 9 [IQR 5.0-10.0] vs 3 [1.0-5.0] symptoms, p<0.001), and signs of cognitive failure (41%) and depression (>24%). Immune abnormalities that were found in the entire group of long COVID patients were low grade inflammation (increased inflammatory gene expression in monocytes, increased serum pro-inflammatory cytokines) and signs of T-lymphocyte senescence (increased exhausted CD8+ TEMRA-lymphocytes). Immune profiles did not significantly differ between fatigued and non-fatigued long COVID groups. However, the severity of fatigue (total FAS score) significantly correlated with increases of intermediate and non-classical monocytes, upregulated gene levels of CCL2, CCL7, and SERPINB2 in monocytes, increases in serum Galectin-9, and higher CD8+ T-lymphocyte counts. Conclusion: Long COVID with fatigue is associated with many concurrent and persistent symptoms lasting up to one year after hospitalization. Increased fatigue severity associated with stronger signs of monocyte activation in long COVID patients and potentially point in the direction of monocyte-endothelial interaction. These abnormalities were present against a background of immune abnormalities common to the entire group of long COVID patients.
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COVID-19 , Linfócitos T , Humanos , Monócitos , COVID-19/complicações , Síndrome de COVID-19 Pós-Aguda , Assistência ao Convalescente , SARS-CoV-2 , Alta do Paciente , Fadiga , Citocinas , Inflamação/complicaçõesRESUMO
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.