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Feasibility and short-term effects of Activity Coach+: a physical activity intervention in hard-to-reach people with a physical disability
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Purpose: Existing physical activity interventions do not reach a considerable proportion of physically disabled people. This study assessed feasibility and short-term effects of Activity Coach+, a community-based intervention especially targeting this hard-to-reach population.
Methods: Feasibility was determined by reach, dropouts, and compliance with the protocol. Physical activity was measured with the Activ8 accelerometer and the adapted SQUASH questionnaire. Health outcomes were assessed by body composition, blood pressure, hand grip force, 10-metre walk test, 6-minute walk test, and the Berg Balance Scale. The RAND-36, Exercise Self-Efficacy Scale, Fatigue Severity Scale, and IMPACT-S were administered. Measurements were performed at baseline and after 2 and 4 months. Changes over time were analysed by Friedman tests.
Results: Twenty-nine participants enrolled during the first 4 months, of whom two dropped out. Intervention components were employed in 86–100% of the participants. Physical activity did not change after the implementation of Activity Coach+. Body mass index (p = 0.006), diastolic blood pressure (p = 0.032), walking ability (p = 0.002), exercise capacity (p = 0.013), balance (p = 0.014), and vitality (p = 0.049) changed over time.
Conclusions: Activity Coach + is feasible in a community setting. Indications for effectivity of Activity Coach + in hard-to-reach people with a physical disability were found.
Value beyond function: analyzing the perception of wheelchair innovations in Kenya
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Innovations in the field of assistive technology are usually evaluated based on practical considerations related to their ability to perform certain functions. However, social and emotional aspects play a huge role in how people with disabilities interact with assistive products and services. Over a five months period, we tested an innovative wheelchair service provision model that leverages 3D printing and Computer Aided Design to provide bespoke wheelchairs in Kenya. The study involved eight expert wheelchair users and five healthcare professionals who routinely provide wheelchair services in their community. Results from the study show that both users and providers attributed great value to both the novel service delivery model and the wheelchairs produced as part of the study. The reasons for their appreciation went far beyond the practical considerations and were rooted in the fact that the service delivery model and the wheelchairs promoted core values of agency, empowerment and self-expression.
ASSETS '20: The 22nd International ACM SIGACCESS Conference on Computers and Accessibility.; 2020
https://discovery.ucl.ac.uk/id/eprint/10110230/
Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy
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Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references.
Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health.
Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy.
Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.
How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge
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Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.
Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).
Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.
Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.
Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.
African Journal of Disability, Vol 8, 2019
Entering the labor market: increased employment rates of young adults with chronic physical conditions after a vocational rehabilitation program
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Purpose: Employment of young adults with chronic physical conditions entering the labor market after finishing post-secondary education remains behind compared to typically developing peers. The aim of this study is to evaluate changes in their paid employment levels after following a vocational rehabilitation intervention (‘At Work’).
Materials and methods: Participants aged between 16 and 27 years (n = 90) were recruited via rehabilitation physicians and a jobcoach agency and participated in a vocational rehabilitation program. Cochran’s Q and McNemar tests served to test the development of intervention participants’ paid employment over time. Chi-square tests were used to compare intervention participants’ paid employment level with national reference data selected on age and having a self-reported chronic physical condition.
Results: Paid employment level of the intervention cohort significantly increased from 10.0% at baseline to 42.4% at 2-years follow-up (p < 0.001). At 2-years follow-up, their employment rates approached the employment rates of national reference data (42.4% versus 52.9%, p = 0.17).
Conclusion: Starting from a disadvantaged position, the paid employment rate of the intervention cohort substantially increased over time, approaching the employment rate of reference data. ‘At Work’ seems to be appropriate for supporting this specific group who face obstacles to enter the labor market, to find competitive employment.
Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data
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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.
Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.
Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).
Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.
Objective and subjective measures of physical functioning in women with fibromyalgia: what type of measure is associated most clearly with subjective well-being?
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Purpose: To find modifiable factors that are related to subjective well-being would be valuable for improving interventions in fibromyalgia. Physical activity, sedentary behaviour, and physical fitness may represent potential areas to optimize treatment regimens. In fibromyalgia, there is a discordance between clinical observations and patient-reported outcomes (objective and subjective assessments). Therefore, the present study aims at analyzing the associations of objective and subjective evaluations of physical activity, sedentary behaviour, and physical fitness with subjective well-being and determine if and how objective and subjective associations differ.
Methods: In this population-based cross-sectional study participated 375 women with fibromyalgia from the al-Ándalus project (Spain). Physical activity, sedentary behaviour, and physical fitness were objectively (accelerometers and performance testing) and subjectively (questionnaires) measured. Participants self-reported their levels of positive affect, negative affect, and life satisfaction.
Results: In the most conservative multivariate analysis, we found independent associations of the objective measures of physical activity with positive affect and life satisfaction and sedentary behaviour with positive affect. No such relationship was seen with subjective measures of the same behaviours. Moreover, we observed that objective and subjective physical fitness evaluations were independent of each other related to subjective well-being.
Conclusions: Independent associations of the objective measures (but not the subjective assessments) of physical activity with positive affect and life satisfaction, and of sedentary behaviour with positive affect were observed. However, objective measures and subjective appraisals of physical fitness appear to be independently related to well-being, which should be considered when developing physical exercise interventions for fibromyalgia.
Factors that relate to sport participation of adolescents with a mobility impairment
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Background: There are multiple factors that make it difficult for learners with a mobility impairment to participate in sport, if not impossible. Unfortunately, it is not known which of these factors can be considered as the most important ones.
Objectives: The main objective was to obtain clarity on the factors that differentiate best between learners who participate in sport and those learners who are not participating.
Method: In total, 140 boys and girls with different types of mobility impairments participated. Information was obtained on inevitable factors such as age and gender, structure factors such as type of school and hostel dwelling and personal factors such as emotions and relationships with parents and peers.
Results: Four factors emerged that explained 22% of the variance in the distinctive characteristics of the group that participates in sport and the non-participating group. Age was the most important variable explaining 9% of the variance followed by trust (an emotional variable), gender and health.
Conclusion: Children with a mobility impairment should be encouraged to start participating in sport at an early age. Specific attention should be given to girls who are more reluctant to participate. Health is a factor that can inhibit sports participation; however, it should not be overemphasised. The emphasis should rather be on the development of trust, which will help adolescents with an impairment to take responsible risks in an adaptive sports environment.
African Journal of Disability, Vol 8, 2019
Access to primary care for persons with spinal cord injuries in the greater Gaborone area, Botswana
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Background: People with spinal cord injury (SCI) often have great need for healthcare services, but they report access challenges. Primary care access to people with SCI has not been explored in Botswana.
Objective: This study aimed to identify barriers and facilitators that users with spinal cord injuries experience in accessing primary care services in the greater Gaborone area, Botswana.
Methods: A quantitative, cross-sectional, observational study was conducted. Data were collected with a structured questionnaire from 57 participants with traumatic and non-traumatic SCI. Descriptive and inferential analysis was performed.
Results: The male to female ratio was 2.8:1. The mean age of participants was 40 years (standard deviation 9.59). Road traffic crashes caused 85% of the injuries. Most participants visited primary care facilities between 2 and 10 times in the 6 months before the study. Participants were satisfied with the services (63%) and felt that facilities were clean (95%) and well maintained (73.5%). Preferential treatment, respect, short waiting times and convenient hours facilitated satisfaction with services. Availability was hampered by insufficient provider knowledge on SCI as indicated by 71.9% of participants, and shortage of consumables (80.7%). Structural challenges (42.1% could not enter the facility by themselves and 56.5% could not use the bathroom) and lack of height-adjustable examining couches (66.7%) impeded accessibility. Cost was incurred when participants (64.9%) utilised private health services where public services failed to address their needs.
Conclusion: Primary care services were mostly affordable and adequate. Availability, acceptability and accessibility aspects created barriers.
African Journal of Disability, Vol 8, 2019
Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana
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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.
Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.
Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.
Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.
Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.
African Journal of Disability, Vol 8, 2019
Barriers and Facilitators to Community Ambulation in Maharashtra, India: Perception of Individuals with Stroke
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Purpose: The study aimed to understand the self-perceived environmental barriers/ facilitators to community ambulation among stroke survivors in Maharashtra State, India.
Method: The Facilitators and Barriers Survey /Mobility Questionnaire (FABS/M) was used to collect information from a convenience sample of 50 individuals with stroke. Data was analysed using descriptive statistics in Statistical Package for Social Sciences (SPSS) 22.00.
Results: Curbs, gravel surfaces, rain, noise, and crowd were marked as barriers by 56%, 58%, 52%, 36% and 50% of the participants, respectively. Ramps, elevators, and flat surfaces were reported as facilitators by 42%, 70% and 82% of the participants, respectively. Participants also mentioned the absence of automatic doors and escalators in community areas (92% and 88%), specialised exercise equipment, handrails and specialised bathroom equipment at home (92%, 50% and 52%), and inaccessibility to public places (50%), as barriers to easy mobility.
Conclusions: To enhance community mobility of individuals with stroke, environmental barriers should be reduced and facilitators should be enhanced. The marked absence of facilitators in the environment should be rectified and appropriate steps should be taken to enhance ambulation.
Limitations of the study are the small sample size. Factors like balance, economic status, physical activity of the stroke individuals and severity of stroke were also not considered.
Health-Related Quality of Life of Wheelchair Fencers, Sedentary People with Disability and Conventional Fencers in Brazil, Assessed by Short Form 36 (SF-36)
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Purpose: It is well established that physical exercise, in general, decreases anxiety and depression. Para sport or sport for people with disabilities is used as a rehabilitation strategy to improve their quality of life. This study aimed to investigate people with disabilities who practise wheelchair fencing, sedentary people with physical disability and conventional fencers, assessed by Short Form 36 (SF-36), by comparing the groups.
Method: Forty-two people from Physical Disability Association of Parana (ADFP) answered SF-36 and were divided into three groups: Conventional Fencers (CF), Wheelchair Fencers (WF), and Sedentary People with Physical Disability (SD).
Results: This study was the first to report the Health-Related Quality of Life (HRQOL) of conventional fencers, wheelchair fencers, and sedentary people with physical disability, using SF-36. The data demonstrated high scores in CF and WF, on seven SF-36 scales of the eight-scale profile, including functional and mental health, role physical, bodily pain, general health perception, vitality, social functioning, mental health. Moreover, the sedentary group had lower scores in most of the domains when they were compared to CF.
Conclusion: The results might provide supportive evidence that HRQOL of WF has demonstrated a positive effect on people with disability since para sport has been used as a rehabilitation programme.
Implication: The implementation of a public campaign is recommended, about sport as a health promoter for disability and rehabilitation. By involving healthcare providers from the area, people with disabilities can be encouraged to participate in para sport.
Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study
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Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).
Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.
Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.
Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.
A conceptual framework for designing Ambient assisted living services for individuals with disabilities in Uganda and South Africa
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Background: Individuals with disabilities experience difficulty in using various everyday technologies such as computers and smartphones.
Objectives: To propose a conceptual framework that will lead to the development of practical and user friendly assistive technology.
Method: A literature review of challenges faced by individuals with physical disabilities was carried out. Interviews with adults with physical disabilities in Kampala, Uganda, and Port Elizabeth, South Africa, identified three main challenges with regard to using technology: using a mobile phone, controlling an electronic environment and using a computer.
Results: The challenges identified can be solved by taking into consideration the needs of individuals with disabilities. However, the design of new technologies and interaction techniques, such as natural hand gestures and voice, as input mechanisms has able-bodied individuals in mind. Individuals with disabilities are considered as an afterthought. The main reason for this is that individuals with a disability are a minority and hence it may not make economic sense for technology innovators to cater for their unique needs. A lack of practical guidelines on how to design for individuals with disabilities is another reason why designing for individuals with disabilities is often an afterthought.
Conclusion: This article proposes a conceptual framework that can be used by researchers and technology designers in order to design products that could cater for the unique needs of individuals with disabilities. The article also emphasises the importance of exploring alternative interaction techniques, as they could enable individuals with disabilities to fully utilise technologies such as smart phones, computers and smart home electronics.
African Journal of Disability, Vol 8, 2019
Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress
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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.
Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.
Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.
Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.
Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio
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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.
Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.
Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.
Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.
Participation restrictions and vocational rehabilitation needs experienced by persons with a unilateral lower limb amputation in the Western Cape, South Africa
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Background: Vocational rehabilitation (VR) aims to rehabilitate a person with an amputation back into actively participating in society. Even though lower limb amputation (LLA) surgery is commonly performed in South Africa (SA), little research has been published on the participation restrictions experienced by and vocational needs of persons with LLA in the Western Cape (WC).
Objectives: The aim of this study was to determine and explore the participation restrictions and VR needs of persons with a unilateral LLA in the WC.
Method: A mixed-methods approach and a sequential exploratory design were utilised to collect data from 50 persons with an LLA. Participants were conveniently sampled within the Cape Metropole region of the WC, SA. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) tool was used to collect the quantitative data, and telephonic interviews were conducted for qualitative data collection.
Results: A third (28%) of participants in this study were unemployed, and only 14% (n = 7) of the participants owned or used a prosthesis. In addition, 50% of the participants either had a disability grant or were on pension. The participation restrictions identified were mainly related to mobility where 74% (n = 37) of participants had extreme difficulty with mobility in general, 92% (n = 46) struggled with walking distances longer than 1 km and 80% (n = 40) had extreme difficulty in completing household tasks quickly. The main VR needs identified in this study were the inadequate rehabilitation services that target ambulation (standing and walking) to facilitate employment.
Conclusion: Persons with a unilateral LLA still experience significant difficulties in mobility 3 months post-amputation, which negatively affects their participation in society and vocational activities.
African Journal of Disability, Vol 8, 2019
Associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury
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Background: The development of secondary health conditions (SHCs) after spinal cord injury (SCI) is common and can affect an individual’s emotional well-being, and his or her health-related quality of life (QOL). Little is known about relationships between performing health-benefiting behaviours and the presence (or absence) of SHCs and QOL, particularly in South Africa.
Objectives: This research study was conducted in order to determine the associations between health behaviour, SHCs and QOL in people with SCI (PWSCI).
Method: This cross-sectional study included 36 PWSCI discharged from a private rehabilitation facility in Pretoria, South Africa. The PWSCI completed questionnaires pertaining to lifestyle, independence, presence of SHCs, social support and QOL. Data were analysed using descriptive and inferential statistics such as correlation tests and chi-square test of independence (x2) using the SPSS v25. Moderate, moderately high and high correlations are reported (Pearson r ≥ 0.4). Results were significant if p < 0.05.
Results: Participation in health-benefiting behaviour was associated with increased QOL (r = 0.457, p < 0.01) and increased social support from family and friends (r = 0.425, p < 0.01), which was associated with increased QOL (r = 0.671, p < 0.001). Not participating in specific neuromusculoskeletal health behaviours was found to be associated with the overall presence of SHCs (r = -0.426, p < 0.01).
Conclusions: Participating in health-benefiting behaviour can reduce the development of SHCs and subsequently increase QOL in PWSCI. Health professionals must focus on minimising the development of SHCs by providing specific education on good health-benefiting behaviour.
African Journal of Disability, Vol 8, 2019
Activity limitations and participation restrictions in people with multiple sclerosis: a detailed 10-year perspective
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Aim: To conduct a detailed investigation into changes in activity limitations and participation restrictions over 10 years in people with mild, moderate and severe multiple sclerosis.
Methods: This study was a 10-year longitudinal study of 264 people with multiple sclerosis living in Stockholm County, Sweden. Ten-year changes in personal and instrumental activities in daily living were assessed using the Katz Activities in Daily Living Index Extended and participation in social/lifestyle activities using the Frenchay Activities Index.
Results: While people with moderate multiple sclerosis, compared to baseline, demonstrated significantly higher proportions of dependency in most activities of personal and instrumental activities in daily living at the 10-year follow-up, the mild group primarily increased their dependency in instrumental activities and the severe group in personal activities. Significantly higher proportions of the moderate group showed restricted participation in domestic and outdoor activities whereas the mild group only showed restrictions in a few domains of participation. A majority of people with severe multiple sclerosis showed restricted participation in all social/lifestyle activities at baseline and the 10-year follow-up.
Conclusions: Prominent long-term increases in activity limitations and participation restrictions occurred across the spectrum of disease severity but was most pronounced in those more moderately affected.
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