Patients' evaluation of aftercare following hospitalization for COVID-19: satisfaction and unmet needs.

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.

Correlates of physical activity in ambulatory people with spinal cord injury during the first year after inpatient rehabilitation.

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.

Obesity in wheelchair users with long-standing spinal cord injury: prevalence and associations with time since injury and physical activity.

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.

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

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

Guide Development for eHealth Interventions Targeting People With a Low Socioeconomic Position: Participatory Design Approach.

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.

Unraveling the interplay between daily life fatigue and physical activity after subarachnoid hemorrhage: an ecological momentary assessment and accelerometry study.

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.

A core outcome set for multimorbidity risk in individuals with cerebral palsy.

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.

The Barriers and Facilitators of eHealth-Based Lifestyle Intervention Programs for People With a Low Socioeconomic Status: Scoping Review.

BACKGROUND: Promoting health behaviors and preventing chronic diseases through a healthy lifestyle among those with a low socioeconomic status (SES) remain major challenges. eHealth interventions are a promising approach to change unhealthy behaviors in this target group. OBJECTIVE: This review aims to identify key components, barriers, and facilitators in the development, reach, use, evaluation, and implementation of eHealth lifestyle interventions for people with a low SES. This review provides an overview for researchers and eHealth developers, and can assist in the development of eHealth interventions for people with a low SES. METHODS: We performed a scoping review based on Arksey and O'Malley's framework. A systematic search was conducted on PubMed, MEDLINE (Ovid), Embase, Web of Science, and the Cochrane Library, using terms related to a combination of the following key constructs: eHealth, lifestyle, low SES, development, reach, use, evaluation, and implementation. There were no restrictions on the date of publication for articles retrieved upon searching the databases. RESULTS: The search identified 1323 studies, of which 42 met our inclusion criteria. An update of the search led to the inclusion of 17 additional studies. eHealth lifestyle interventions for people with a low SES were often delivered via internet-based methods (eg, websites, email, Facebook, and smartphone apps) and offline methods, such as texting. A minority of the interventions combined eHealth lifestyle interventions with face-to-face or telephone coaching, or wearables (blended care). We identified the use of different behavioral components (eg, social support) and technological components (eg, multimedia) in eHealth lifestyle interventions. Facilitators in the development included iterative design, working with different disciplines, and resonating intervention content with users. Facilitators for intervention reach were use of a personal approach and social network, reminders, and self-monitoring. Nevertheless, barriers, such as technological challenges for developers and limited financial resources, may hinder intervention development. Furthermore, passive recruitment was a barrier to intervention reach. Technical difficulties and the use of self-monitoring devices were common barriers for users of eHealth interventions. Only limited data on barriers and facilitators for intervention implementation and evaluation were available. CONCLUSIONS: While we found large variations among studies regarding key intervention components, and barriers and facilitators, certain factors may be beneficial in building and using eHealth interventions and reaching people with a low SES. Barriers and facilitators offer promising elements that eHealth developers can use as a toolbox to connect eHealth with low SES individuals. Our findings suggest that one-size-fits-all eHealth interventions may be less suitable for people with a low SES. Future research should investigate how to customize eHealth lifestyle interventions to meet the needs of different low SES groups, and should identify the components that enhance their reach, use, and effectiveness.

CO-FLOW: COvid-19 Follow-up care paths and Long-term Outcomes Within the Dutch health care system: study protocol of a multicenter prospective cohort study following patients 2 years after hospital discharge.

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.

Physical Activity and Sedentary Behavior From Discharge to 1 Year After Inpatient Rehabilitation in Ambulatory People With Spinal Cord Injury: A Longitudinal Cohort Study.

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.

Association Between Exercise Capacity and Health-Related Quality of Life During and After Cardiac Rehabilitation in Acute Coronary Syndrome Patients: A Substudy of the OPTICARE Randomized Controlled Trial.

OBJECTIVE: To examine the strength of the association between exercise capacity and health-related quality of life (HRQOL) during and after cardiac rehabilitation (CR) in patients with acute coronary syndrome (ACS) who completed CR. DESIGN: Prospective cohort study. SETTING: Outpatient CR center. PARTICIPANTS: Patients (N=607) with ACS who completed CR. INTERVENTIONS: Multidisciplinary 12-week exercise-based CR program. MAIN OUTCOME MEASURES: At baseline (pre-CR), the 6-Minute Walk Test (6MWT) was performed to determine exercise capacity, and the MacNew Heart Disease Health-related Quality of Life questionnaire was used to assess HRQOL. Measurements were repeated immediately after completion of CR (post-CR): at 12 months and 18 months follow-up. Multivariable linear regression, including an interaction term for time and exercise capacity, was applied to study the association between exercise capacity and HRQOL at different time points relative to CR, whereas model parameters were estimated by methods that accounted for dependency of repeated observations within individuals. RESULTS: Mean age in years ± SD was 58±8.9 and 82% of participants were male. Baseline mean 6MWT distance in meters ± SD was 563±77 and median (25th-75th percentile) global HRQOL was 5.5 (4.6-6.1) points. Mean 6MWT distance (P<.001) and the global (P<.001), physical (P<.001), emotional (P<.001) and social (P<.001) domains of HRQOL improved significantly during CR and continued to improve during follow-up post-CR. Independent of the timing relative to CR (ie, pre-CR, post-CR, or during follow-up), a difference of 10 m 6MWT distance was associated with a mean difference in the global HRQOL domain of 0.007 (95% confidence interval [CI], 0.001-0.014) points (P=.029) and a mean difference in the physical domain of 0.009 (95% CI, 0.001-0.017) points (P=.023). CONCLUSIONS: Better exercise capacity was significantly associated with higher scores on the global and physical domains of HRQOL, irrespective of the timing relative to CR, albeit these associations were weak. Hence, CR programs in secondary prevention should continue to aim at enhancing both HRQOL and exercise capacity.

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

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

Physical activity and sedentary behaviour in children with spina bifida.

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.

Physical activity in wheelchair-using youth with spina bifida: an observational study.

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.

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

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

Changes in Physical Activity and Sedentary Behavior During Cardiac Rehabilitation.

OBJECTIVE: To objectively measure changes in both moderate-to-vigorous physical activity (MVPA) and sedentary behavior (SB) during and after standard cardiac rehabilitation (CR). DESIGN: Prospective cohort study. SETTING: Outpatient CR center. PARTICIPANTS: Patients (N=135) with acute coronary syndrome (ACS) who completed CR. INTERVENTIONS: Multidisciplinary CR according to current guidelines. MAIN OUTCOME MEASURES: The proportion of time spent in MVPA and SB was objectively measured with an accelerometer. The distribution of time in MVPA and SB was also determined (eg, average length of time periods spent in MVPA and SB). All measurements were obtained before CR, after CR, and at 1-year follow-up. RESULTS: Patients' time in MVPA during waking hours increased by .65% (≈5min) during CR (P=.002) and remained increased at 1-year follow-up (P=.037). The MVPA distribution did not change. During CR, time spent in SB decreased by 2.49% (≈22min; P<.001), and SB time became more fragmented with more breaks and shorter SB periods (P<.001). These SB improvements were maintained at 1-year follow-up (P<.001). CONCLUSIONS: Patients with ACS achieved a small improvement in MVPA time during CR, but MVPA distribution remained unchanged. More substantial improvements occurred for SB time and distribution. However, by the end of CR, patients still spent relatively little time in MVPA and a long time in SB, which is known to be detrimental to cardiovascular health. Although CR programs have the potential to improve physical behavior, our findings highlight the need to develop adjusted CR targets that address the amount and distribution of MVPA and SB.

Inactive lifestyles and sedentary behavior in persons with chronic aneurysmal subarachnoid hemorrhage: evidence from accelerometer-based activity monitoring.

BACKGROUND: Aneurysmal subarachnoid hemorrhage (a-SAH) is a potential life-threatening stroke. Because survivors may be at increased risk for inactive and sedentary lifestyles, this study evaluates physical activity (PA) and sedentary behavior (SB) in the chronic phase after a-SAH. METHODS: PA and SB were objectively measured at six months post a-SAH with an accelerometer-based activity monitor, with the aim to cover three consecutive weekdays. Total time spent in PA (comprising walking, cycling, running and non-cyclic movement) and SB (comprising sitting and lying) was determined. Also, in-depth analyses were performed to determine the accumulation and distribution of PA and SB throughout the day. Binary time series were created to determine the mean bout length and the fragmentation index. Measures of PA and SB in persons with a-SAH were compared to those in sex- and age-matched healthy controls. RESULTS: The 51 participants comprised 33 persons with a-SAH and 18 controls. None of the participants had signs of paresis or spasticity. Persons with a-SAH spent 105 min/24 h being physically active, which was 35 min/24 h less than healthy controls (p = 0.005). For PA, compared with healthy controls, the mean bout length was shorter in those with a-SAH (12.0 vs. 13.5 s, p = 0.006) and the fragmentation index was higher (0.053 vs. 0.041, p < 0.001). Total sedentary time during waking hours showed no significant difference between groups (514 min vs. 474 min, p = 0.291). For SB, the mean bout length was longer in persons with a-SAH (122.3 vs. 80.5 s, p = 0.024), whereas there was no difference in fragmentation index between groups (0.0032 vs 0.0036, p = 0.396). CONCLUSIONS: Persons with a-SAH are less physically active, they break PA time into shorter periods, and SB periods last longer compared to healthy controls. Since inactive lifestyles and prolonged uninterrupted periods of SB are independent risk factors for poor cardiovascular health, interventions seem necessary and should target both PA and SB. STUDY REGISTRATION: Dutch registry number: NTR 2085.

Does exercise training improve cardiopulmonary fitness and daily physical activity in children and young adults with corrected tetralogy of Fallot or Fontan circulation? A randomized controlled trial.

BACKGROUND: Many patients with congenital heart disease do not meet current public health guidelines to participate in moderate-to-vigorous physical activity for ≥60 minutes per day. They are less fit than their healthy peers. We hypothesized that exercise training would increase cardiopulmonary fitness and daily physical activity in these patients. We therefore assessed effects of an exercise training program on cardiopulmonary fitness and daily physical activity in patients with corrected tetralogy of Fallot (ToF) or Fontan circulation. METHODS: In a multicenter prospective controlled trial, patients with ToF or Fontan circulation (age 10-25 years) were randomized, 56 patients to the exercise group and 37 to the control group. The exercise group participated in a 12-week standardized aerobic exercise training program. The control group continued lifestyle as usual. Cardiopulmonary exercise testing and activity measurements were performed before and after 12 weeks. RESULTS: Peak oxygen uptake increased in the exercise group by 5.0% (1.7 ± 4.2 mL/kg per minute; P = .011) but not in the control group (0.9 ± 5.2 mL/kg per minute; P = not significant). Workload increased significantly in the exercise group compared with the control group (6.9 ± 11.8 vs 0.8 ± 13.9 W; P = .047). Subgroup analysis showed a significant increase in pre-to-post peak oxygen uptake in the exercise group of ToF patients but not in the exercise group of Fontan patients. Percentage of measured time spent in moderate-to-vigorous activity at baseline was 13.6% ± 8.6%, which did not significantly change after training. CONCLUSIONS: Aerobic exercise training improved cardiopulmonary fitness in patients with ToF but not in patients with Fontan circulation. Exercise training did not change daily physical activity.

Feasibility of Handcycle Training During Inpatient Rehabilitation in Persons With Spinal Cord Injury.

OBJECTIVE: To assess the feasibility of a handcycle training program during inpatient rehabilitation and the changes in physical capacity in persons with subacute spinal cord injury (SCI). DESIGN: Before-after trial. SETTING: Rehabilitation centers. PARTICIPANTS: Persons with subacute SCI in regular rehabilitation (N=45). INTERVENTIONS: A structured handcycle interval training program during the last 8 weeks of inpatient rehabilitation. Training was scheduled 3 times per week (24 sessions total), with an intended frequency of ≥2 times per week. Intended intensity was a Borg score of 4 to 7 on a 10-point scale. MAIN OUTCOME MEASURES: Feasibility was assessed, and participant satisfaction was evaluated (n=30). A maximal handcycling test was performed 8 weeks prior to discharge and at discharge to determine peak power output and peak oxygen uptake (VO2peak) (n=23). RESULTS: Of the participants, 91% completed the handcycle training, and no adverse events were reported. Mean training frequency was 1.8±0.5 times per week, and mean Borg score was 6.2±1.4. Persons with complete lesions demonstrated lower training feasibility. Most participants were satisfied with the handcycle training. Peak power output and VO2peak improved significantly after the training period (P<.01) by 36.4% and 9.6%, respectively. CONCLUSIONS: Overall, handcycle training during inpatient rehabilitation in persons with SCI was feasible except for the training frequency. Persons with complete lesions likely need extra attention to benefit optimally from handcycling training. Because the improvements in physical capacity were larger than those known to occur in persons with paraplegia receiving regular rehabilitation, the results suggest that the addition of handcycle training may result in larger increases in physical capacity compared with regular rehabilitation only.

Participation in society in patients with coronary artery disease before and after cardiac rehabilitation.

OBJECTIVES: To assess changes in participation in society (frequency, restrictions, satisfaction) during and after cardiac rehabilitation (CR) and to assess associations between participation and heath-related quality of life (HRQOL). DESIGN: Prospective cohort study. SETTING: Outpatient CR center. PARTICIPANTS: Patients with coronary artery disease (N=121; mean age, 57y; 96 men [79%]). INTERVENTIONS: Multidisciplinary CR. MAIN OUTCOME MEASURES: Participation in society was assessed with the Utrecht Scale for Evaluation of Rehabilitation-Participation and HRQOL with the MacNew Heart Disease health-related quality of life questionnaire. All measurements were performed pre-CR, post-CR, and 1 year after the start of CR. RESULTS: Frequency of participation did not change during and after CR. The proportion of patients experiencing restrictions in participation decreased from 69% pre-CR to 40% post-CR (P<.001) and 29% at 1 year (P<.001 vs post-CR). Pre-CR, 71% of patients were dissatisfied with their participation. This improved to 49% post-CR (P<.001) and 53% at 1 year (P<.001 vs pre-CR). Experienced restrictions explained 5% to 7% of the improvement in HRQOL during CR and satisfaction with participation explained 10% to 19%. CONCLUSIONS: Participation in society improves in patients undergoing CR. Despite these improvements, the presence of coronary artery disease is associated with persistent restrictions and dissatisfaction with participation. Because experienced restrictions and dissatisfaction are related to changes in HRQOL it is important to address these aspects of participation during CR.