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Aim: To estimate the probability of independent walking and wheeled mobility in individuals with cerebral palsy (CP) at home and in the community in relation to age and gross motor function. Method: This was a longitudinal cohort study using data reported into the combined Swedish CP follow-up programme and national quality registry from October 2000 to October 2022. Walking, walking with aids, wheeled mobility, and assisted mobility defined independent or assisted mobility at home and in the community, based on the Functional Mobility Scale with additional data on wheelchair performance, were assessed. Results; There were 52 858 examinations reported for 6647 individuals with CP (age range 0-32 years, follow-up period 0-22 years). Most children and adults in Gross Motor Function Classification System (GMFCS) levels I or II walked without assistive devices. The probability of dependence on others for mobility in the community was high for both children and adults in GMFCS levels III to V. Interpretation: Although independent mobility is vital for participation and social inclusion, many children and adults with CP are dependent on others for mobility. We recommend clinicians, together with families and individuals with CP, explore how to increase access to independent mobility from an early age and continuously throughout the life course.

Background During the COVID-19 outbreak in 2020, national governments took restrictive measures, such as a visitors ban, prohibition of group activities and quarantine, to protect nursing home residents against infections. As ‘safety’ prevailed, residents and close relatives had no choice but to accept the restrictions. Their perspectives are relevant because the policies had a major impact on them, but they were excluded from the policy decisions. In this study we looked into the moral attitudes of residents, close relatives and volunteers regarding the restrictions in retrospect, and what moral lessons they considered important. Methods We conducted 30 semi-structured interviews with residents and close relatives and one focus group meeting with volunteers working in nursing homes. Data were transcribed verbatim and analyzed inductively. Subsequently, three Socratic dialogue meetings with residents, close relatives and volunteers were organized in which first analysis outcomes were discussed and dialogues were fostered into moral lessons for future pandemics. Outcomes were combined with moral theory following an empirical bioethics design. Results Critical perspectives regarding the COVID-19 restrictions grew in time. Various moral values were compromised and steered moral lessons for our future. The participants recognized three moral lessons as most important. First, constructing tailored (well-balanced) solutions in practice is desirable. Second, proper recognition is needed for the caring role that close relatives fulfill in practice. Third, a responsive power distribution should be in place that includes all stakeholder perspectives who are affected by the restrictions. Discussion Comparing the results with moral theory strengthens the plea for inclusion of all stakeholder groups in decision-making processes. To further concretize the moral lessons, tailored solutions can be realized with the use of moral case delibe

Background: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health. Objective: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference. Methods: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis. Results: In total, 101 participants were included, of whom 69 without intellectual disability (mean age +/- SD of 38.4 +/- 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I-V) and 32 with intellectual disability (mean age +/- SD of 25.0 +/- 6.4 y; 71.9% with spastic type of CP; GMFCS levels I-V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors. Conclusions: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP.

Aim: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP). Method: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. Results: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies. Interpretation: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide.

During the COVID-19 outbreak in March 2020, restrictive measures (e.g., prohibiting physical visits and group activities) were introduced in nursing homes to protect older residents. Although the importance of social contacts and social activities to fulfill social needs and avoid loneliness is known, these were challenged during the pandemic. This qualitative study specifically focused on how residents, close relatives, and volunteers in nursing homes experienced the restrictive measures in retrospect and gained insights into the impact of the restrictive measures on social needs and loneliness, and the lessons that could be learned. Thirty semi-structured, face-to-face interviews with residents and close relatives, and one online focus group with ten volunteers, were conducted. Recruitment took place at psychogeriatric and somatic units in the Northern, Eastern and Southern regions of the Netherlands and Flanders, Belgium. The interviews and focus group were transcribed verbatim, and an open, inductive approach was used for analysis. Alternative ways of social contact could not fully compensate for physical visits. Generally, participants reported that it was a difficult time, indicated by feelings of loneliness, fear, sadness, and powerlessness. A great diversity in loneliness was reported. The most important reasons for feeling lonely were missing close social contacts and social activities. The diversity in the impact of restrictive measures depended on, e.g., social needs, coping strategies, and character. Restrictive COVID-19 measures in nursing homes resulted in negative emotions and unmet social needs of residents, close relatives, and volunteers. During future outbreaks of the COVID-19 virus or another virus or bacterium, for which restrictive measures may be needed, nursing homes should actively involve residents, close relatives, and volunteers to balance safety, self-determination, and well-being.

INTRODUCTION: There is a large diversity in the clinical presentation of frozen shoulder (FS) and the clinical outcome is not always satisfactory. The aim of the current study was to examine to what extent range of motion (ROM) limitation, metabolic factors (diabetes mellitus and thyroid disorders), autonomic symptoms and pain sensitivity may contribute to the prognosis in terms of shoulder pain and disability and quality of life in patients with FS. METHODS: Patients with stage 1 or 2 FS were longitudinally followed-up during 9 months after baseline assessment. They completed six questionnaires and underwent quantitative sensory testing (pressure pain thresholds, temporal summation and conditioned pain modulation) and ROM assessment. RESULTS: One hundred and forty-nine patients with FS were initially recruited and 121 completed at least one follow-up measurement. Shoulder pain and disability improved over time and diabetes mellitus was found to be a prognostic factor for final outcome. Several domains of quality of life also improved over time and external rotation ROM, diabetes mellitus, thyroid disorder and autonomic symptoms were found to be prognostic factors for final outcome. These prognostic factors explained 2.5%-6.3% of the final outcome of shoulder pain and disability and quality of life. DISCUSSION AND CONCLUSION: In patients with FS, prognostic variables were able to predict different outcomes, indicating that outcomes in this population can be variable-dependent. Other variables not explored in this study might contribute to the prognosis of patients with FS, which should be investigated in future research. In clinical practice, baseline assessment of prognostic factors and focusing on a more holistic approach might be useful to inform healthcare practitioners about progression of patients with FS during a 9-month period.

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

The first part of this thesis describes the ICF Core Sets consisting of relevant aspects of functioning of adults with cerebral palsy (CP), which will provide the basis in the process to universal and standardized data collection in clinical practice and research. The second part shows that blood pressure levels and prevalence of hypertension are relatively high in adults with CP, which underscores the importance of clinical screening for blood pressure in individuals with CP beginning in young adulthood.

Objective: To identify areas of functioning in adults with cerebral palsy that are considered relevant by experts, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy.Participants: Experts from various professional backgrounds worldwide who had experience working with adults with cerebral palsy for >= 2 years and were able to complete the survey in the English language.Methods: A cross-sectional study using an international internet-based survey. The experts were asked to address relevant areas of functioning in adults with cerebral palsy. These areas of functioning were then linked to the ICF and the frequencies analysed.Results: A total of 126 experts from 32 countries completed the survey. From the responses, 217 unique second-level ICF categories were identified. The three most frequently mentioned categories were "design, construction and building products and technology of buildings for public use (e150, 77%) and private use" (e155, 67%), followed by "sensation of pain" (b280, 62%).Conclusion: The broad diversity of ICF categories reported by the experts emphasize the known heterogeneity of cerebral palsy and the variety of functioning in adulthood. They also reported on many environmental factors, illustrating the importance of person-environment interactions. These findings provide information about relevant issues for use in developing an ICF Core Set for adults with cerebral palsy.