Caregivers' Perceptions of a High Repetition Sit-To-Stand Exercise Program for Children with Cerebral Palsy Who Have Mobility Limitations.

AIMS: To explore caregiver perceptions about the outcomes and feasibility of a high repetition sit-to-stand home-based exercise program on themselves and their children with cerebral palsy who have mobility limitations. METHODS: Face-to-face semi-structured interviews were conducted with 19 caregivers (17 women, mean age 39 y 6 mo (SD 8 y 4 mo) of 19 children with cerebral palsy (10 males, mean age 7 y 2 mo (SD 2 y 1 mo) classified as level III (n = 8) or IV (n = 11) on the Gross Motor Function Classification System. The children had completed a 6-week task-specific sit-to-stand exercise program. Each week a physical therapist and caregivers supervised the program: twice by the physical therapist and three times by the caregivers. Interviews were completed immediately after program completion, and transcripts were analyzed using a process of inductive thematic analysis within an interpretive description framework. RESULTS: Themes were: (1) caregivers saw positive changes in their children from completing the program, (2) seeing positive changes gave caregivers hope that their child could develop with further training, and (3) the program was feasible to complete. CONCLUSIONS: Caregivers perceived positive changes in their children and expressed increased hope for their child's future after a high repetition sit-to-stand exercise program, suggesting the program is feasible with caregiver supervision.

Acquired mild cognitive impairment in adults with Down syndrome: Age-related prevalence derived from single point assessment data normed by degree of intellectual disability.

BACKGROUND: Individuals with Down syndrome (DS) are at significant risk for early onset Alzheimer's disease (AD), likely due to the triplication of genes on chromosome 21 that facilitate AD neuropathology. To aid the effective early diagnosis of dementia in DS, we demonstrate the strategy of using single point assessment of cognitive performance with scoring normed for degree of intellectual disability to generate age related prevalence data for acquired mild cognitive impairment (AMCI). METHODS: Four hundred and twelve adults with DS were assessed using the Neuropsychological Assessment of dementia in adults with Intellectual Disability. Normative data, banded by degree of intellectual disability, allowed identification of AMCI by atypical deviation from expected performance. RESULTS: AMCI was evident in approximately 20% of adults with DS aged 40 and under, 40% aged 41-50 and 45% aged 51 and over. Relative risk increased significantly in those aged 46 and over. Analysis of prevalence by 5-year age bands revealed two peaks for higher prevalence of AMCI. CONCLUSIONS: Psychometric data indicate single point assessment of AMCI is possible for the majority of adults with DS. Two peaks for age-related prevalence of AMCI suggest the risk for onset of AD conferred by trisomy of chromosome 21 is moderated by another factor, possibly ApoE status.

Sit-to-stand training for self-care and mobility in children with cerebral palsy: a randomized controlled trial.

AIM: To investigate if a sit-to-stand exercise programme for children with cerebral palsy (CP) would improve self-care and mobility. METHOD: Thirty-eight children with CP (19 males, 19 females; mean age 8y 0mo, SD 2y 4mo, age range 4y 0mo-12y 4mo) classified in Gross Motor Function Classification System (GMFCS) levels III and IV and their caregivers were randomly allocated to sit-to-stand training plus routine physiotherapy (balance and gait training) or routine physiotherapy only (controls). Task-specific sit-to-stand training was completed five times a week for 6 weeks under physiotherapist (twice weekly) and caregiver (three times weekly) supervision. Blinded outcome assessments at week 7 were the self-care and mobility domains of the Functional Independence Measure for Children, Five Times Sit-to-Stand Test (FTSST), and Modified Caregiver Strain Index (MCSI). RESULTS: The sit-to-stand group self-care increased by 2.2 units (95% confidence interval [CI] 1.3-3.1) and mobility increased by 2.2 units (95% CI 1.4-3.0) compared to the control group. In the sit-to-stand group, the FTSST was reduced by 4.0 seconds (95% CI -4.7 to -3.2) and the MCSI was reduced by 0.8 units (95% CI -1.2 to -0.4) compared to the control group. INTERPRETATION: A sit-to-stand exercise programme for children with CP classified in GMFCS levels III and IV improved sit-to-stand performance and resulted in small improvements in self-care and mobility, while reducing caregiver strain. What this paper adds Sit-to-stand training improved independence in self-care and mobility for children with cerebral palsy (CP). Home-based sit-to-stand training programmes for children with CP can reduce the burden on supervising caregivers.

Barriers to and facilitators of physical activity for children with cerebral palsy in special education.

AIM: To explore the barriers to and facilitators of physical activity for young people with cerebral palsy in specialist schools. METHOD: Eleven focus groups involving 73 participants (10 young people with cerebral palsy, 13 parents of children with cerebral palsy, 27 teachers, 23 therapists) were held at two specialist schools. Focus groups were audio-recorded and transcribed verbatim. Transcripts were analysed using inductive thematic analysis by two researchers, independently. RESULTS: Four main themes emerged from the focus groups: school priorities; student factors; staffing and environment; and roles and relationships. Physical activity was promoted when academic work and physical activity were seen as equally important school priorities. Student factors that reduced physical activity included fluctuating health, school absences, and protracted rehabilitation after surgery. The staffing and environment unique to specialist schools played a pivotal role in assisting students to be active, as was the importance of collaborative, relationship-based care. INTERPRETATION: Physical activity programmes developed in specialist schools need to take into consideration complexities associated with the age, developmental stage, and academic requirements of young people with cerebral palsy. Particularly for adolescents, motivation was discussed as having a substantial influence on physical activity participation. These findings may assist school leadership teams, clinicians, and teachers in planning physical activity interventions. WHAT THIS PAPER ADDS: Specialist schools offer custom-built environments that promote physical activity and inclusion for students with physical impairments. Therapists and teaching staff work creatively and collaboratively to incorporate an 'all-day' approach to providing physical activity opportunities. Balancing time spent on physical activity versus academic work can cause tension.

Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: clinical cohort study.

BACKGROUND: There is little evidence to guide pharmacological treatment in adults with Down syndrome and Alzheimer's disease. Aims To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimer's disease. METHOD: This was a naturalistic longitudinal follow-up of a clinical cohort of 310 people with Down syndrome diagnosed with Alzheimer's disease collected from specialist community services in England. RESULTS: Median survival time (5.59 years, 95% CI 4.67-6.67) for those on medication (n = 145, mainly cholinesterase inhibitors) was significantly greater than for those not prescribed medication (n = 165) (3.45 years, 95% CI 2.91-4.13, log-rank test P<0.001). Sequential assessments demonstrated an early effect in maintaining cognitive function. CONCLUSIONS: Cholinesterase inhibitors appear to offer benefit for people with Down syndrome and Alzheimer's disease that is comparable with sporadic Alzheimer's disease; a trial to test the effect of earlier treatment (prodromal Alzheimer's disease) in Down syndrome may be indicated. Declaration of interest A.S. has undertaken consulting for Ono Pharmaceuticals, outside the submitted work. Z.W. has received a consultancy fee and grant from GE Healthcare, outside the submitted work.

Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support.

OBJECTIVES: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. METHOD: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. RESULTS: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. CONCLUSIONS: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Eccentric exercise in adults with cardiorespiratory disease: a systematic review.

OBJECTIVE: To determine if eccentric exercise is effective, tolerable and safe for adults with chronic cardiorespiratory disease. DATA SOURCES: We searched electronic databases from inception until January 2015 (Medline, CINAHL, Embase, SportDiscus, PEDro, Cochrane Central and AMED) supplemented by citation tracking and reference list scanning. REVIEW METHODS: Included articles had to report effects of eccentric exercise, alone or as a primary component of intervention, of any intensity and duration, on adults with chronic cardiorespiratory disease. Trials needed to be reported as full text in a peer-reviewed journal and include control data (randomised, quasi-randomised and single group cross-over design trials). Any outcomes or comparison interventions were accepted. Methodological rigor was assessed using the PEDro scale. RESULTS: Of 22 potentially relevant articles, 10 met inclusion criteria. They reported results from seven trials with a total of 112 participants across the diseases. PEDro scores were low (median 3). Eccentric exercise increased strength and mobility to comparable levels as concentric exercise, however, it did so with lower oxygen consumption (effect size as large as d = -3.07 (-4.12, -1.80)), and four-fold power output (effect size d = -3.60 (-5.03, -1.66)). There were no adverse events reported for eccentric exercise. Pain was avoided with familiarisation sessions and individual exercise prescription. CONCLUSION: Eccentric exercise is beneficial and at least comparable with traditional exercise in improving walking and strength for people with chronic cardiorespiratory disease. It was well tolerated and we identified no safety concerns for the use of this intervention for this population.

Gross motor function is an important predictor of daily physical activity in young people with bilateral spastic cerebral palsy.

AIM: The aim of the study was to describe daily physical activity levels of adolescents and young adults with bilateral spastic cerebral palsy (CP) and to identify factors that help predict these levels. METHOD: Daily physical activity was measured using an accelerometer-based activity monitor in 45 young people with bilateral spastic CP (23 males, 22 females; mean age 18y 6mo [SD 2y 5mo] range 16y 1mo-20y 11mo); classified as Gross Motor Function Classification System (GMFCS) level II or III and with contractures of <20° at hip and knee. Predictor variables included demographic characteristics (age, sex, weight) and physical characteristics (gross motor function, lower limb muscle strength, 6min walk distance). Data were analyzed using the information-theoretic approach, using the Akaike information criterion (AIC) and linear regression. RESULTS: Daily activity levels were low compared with published norms. Gross Motor Function Measure Dimension-E (GMFM-E; walking, running, and jumping) was the only common predictor variable in models that best predicted energy expenditure, number of steps, and time spent sitting/lying. GMFM Dimension-D (standing) and bilateral reverse leg press strength contributed to the models that predicted daily physical activity. INTERPRETATION: Adolescents and young adults with bilateral spastic CP and mild to moderate walking disabilities have low levels of daily activity. The GMFM-E was an important predictor of daily physical activity.

Feasibility, acceptability, and effectiveness of an electronic sensor bed/chair alarm in reducing falls in patients with cognitive impairment in a subacute ward.

Falls from bed are common in subacute hospital settings, particularly for patients with cognitive impairment. This repeated measures, single cohort study in 1 subacute ward evaluated effectiveness of an electronic sensor alarm in reducing falls in patients (n = 34) with cognitive impairment. Nursing staff feedback (focus group, survey) was used to determine electronic sensor alarm feasibility. The electronic alarm system was found to be a feasible, effective, and acceptable fall prevention strategy for patients with cognitive impairment.

Feasibility and acceptability of a volunteer-mediated diversional therapy program for older patients with cognitive impairment.

Understanding the perceptions of stakeholders is critical for determining acceptability and feasibility of volunteer-mediated programs. This study evaluated the feasibility and acceptability for staff, volunteers, patients and their carers, of a volunteer diversional therapy program for patients with cognitive impairment undergoing inpatient rehabilitation. Post-program structured interviews were conducted with the volunteers (n = 10), patients (n = 30) and their carers (n = 3); and nursing staff (n = 6) participated in a focus group. Thematic analysis identified five themes (values, attitudes, knowledge, purpose, support) in two dimensions (personal, team culture). Overall, patients, carers, staff and volunteers were satisfied with the volunteer program and perceived benefits for quality of care. Recommendations for improvements to the program related to staff engagement with the program and the volunteers' education and training. The volunteer diversional therapy pilot program for patients with cognitive impairment on a sub-acute ward was acceptable and feasible for patients, carers, staff and volunteers.

Development of the Mini-Assisting Hand Assessment: evidence for content and internal scale validity.

AIM: To describe the development of the Mini-Assisting Hand Assessment (Mini-AHA) for children with signs of unilateral cerebral palsy (CP) aged 8 to 18 months, and evaluate aspects of content and internal scale validity. METHOD: The ability of the video-recorded Mini-AHA play session to provoke bimanual performance in children with unilateral CP and typical development was evaluated. Original AHA test items were examined for their suitability for younger children and possible new items were generated. Data from 108 assessments of children with unilateral CP (86 children, 53 males, 33 females; mean age 13 mo, SD 3 mo, range 8-18 mo) were entered into a Rasch measurement model analysis to evaluate internal scale validity. A Spearman's correlation analysis explored the relationship between age and ability measures for children with unilateral CP. The frequency of maximum scores in 40 children with typical development (22 males, 18 females; mean age 12 mo, SD 3 mo) was examined. RESULTS: The Mini-AHA play session provoked bimanual responses in typically developing children 99% of the time. Person and item fit criteria established 20 items for the scale. The resultant unidimensional scale also demonstrated excellent discriminative features through high separation reliability. The item calibration values covered the range of person ability measures well. Age was not related to the ability measures for children with unilateral CP (rs =0.178). All children with typical development achieved maximum scores. INTERPRETATION: Accumulated evidence shows that the Mini-AHA validly measures use of the affected hand during bimanual performance for children with unilateral CP aged 8 to 18 months. The Mini-AHA has the potential to be a useful assessment to evaluate functional hand use and the effects of intervention in an age group when potential for change is high.

Progressive resistance training and mobility-related function in young people with cerebral palsy: a randomized controlled trial.

AIM: The aim of this study was to investigate whether individualized resistance training improves the physical mobility of young people with cerebral palsy (CP). METHOD: Forty-eight participants with spastic diplegic CP (26 males, 22 females; mean age 18y 1mo, SD 1y 11mo) classified as level II or III on the Gross Motor Function Classification System were allocated randomly to progressive resistance training or usual-care control. Resistance training was completed twice weekly for 12 weeks at a community gymnasium under the supervision of a physiotherapist. Exercises were based on instrumented gait analysis and targeted muscles contributing to walking difficulties. Outcomes at 12 weeks and 24 weeks included objective measures of mobility (6-min walk test, instrumented gait analysis, and Gross Motor Function Measure dimensions D and E), participant-rated measures of mobility (Functional Mobility Scale and Functional Assessment Questionnaire), and muscle performance. RESULTS: The strength of targeted muscles increased by 27% (95% CI 8-46%) compared with control group. There were no between-group differences in any objective measure of mobility at 12 weeks (6-min walk test: mean difference 0.1m; 95% CI -21 to 21m) or at 24 weeks. Participant-rated mobility improved (Functional Mobility Scale at 5m: mean 0.6 units; 95% CI 0.1-1.1 units; Functional Assessment Questionnaire: 0.8 units; 95% CI 0.1-1.6 units) compared with control group at 12 weeks. INTERPRETATION: Individualized progressive resistance training increased strength in adolescents and young adults with spastic diplegic CP. Despite participant-rated benefits, the increased strength did not result in objective improvements in mobility.

Feasibility, safety and preliminary evidence of the effectiveness of a home-based exercise programme for older people with Alzheimer's disease: a pilot randomized controlled trial.

OBJECTIVE: To evaluate the feasibility and safety of a home-based exercise programme for people with Alzheimer's disease, and to provide preliminary evidence of programme effectiveness in improving balance and mobility and reducing falls risk. DESIGN: A randomized controlled trial. SETTING: Community. PARTICIPANTS: Forty people with mild to moderate Alzheimer's disease (mean age 81.9, SD 5.72; 62.5% female). INTERVENTIONS: Participants were randomized to a six-month home-based individually tailored balance, strengthening and walking exercise programme (physiotherapist) or a six-month home-based education programme (control) (occupational therapist). Both programmes provided six home-visits and five follow-up phone calls. MAIN MEASURES: Balance, mobility, falls and falls risk were measured at baseline and programme completion. Intention-to-treat analysis using a generalized linear model with group allocation as a predictor variable was performed to evaluate programme effectiveness. Feasibility and adverse events were systematically recorded at each contact. RESULTS: Fifty-eight per cent of the exercise group finished the programme, completing an average of 83% of prescribed sessions, with no adverse events reported. Functional Reach improved significantly (P = 0.002) in the exercise group (mean (SD), 2.28 (4.36)) compared to the control group (-2.99 (4.87)). Significant improvement was also observed for the Falls Risk for Older People - Community score (P = 0.008) and trends for improvement on several other balance, mobility, falls and falls risk measures for the exercise group compared to the control group. CONCLUSIONS: The exercise programme was feasible and safe and may help improve balance and mobility performance and reduce falls risk in people with Alzheimer's disease.

Impaired sit-to-stand is perceived by caregivers to affect mobility and self-care in children with cerebral palsy who had moderate to severe mobility limitations: A mixed methods analysis.

OBJECTIVE: To explore the effects that impaired ability to sit-to-stand has on upright mobility and self-care in children with cerebral palsy and how this in turn may affect their caregivers. METHODS: A mixed methods research design was conducted with 25 children who had cerebral palsy with moderate to high mobility limitations (GMFCS levels III and IV) and their caregivers. Caregivers were interviewed about their child's mobility and self-care. The independence of each child's activities was rated using the mobility and self-care domains of the Functional Independence Measure for Children (WeeFIM). RESULTS: Two themes were identified from qualitative analyses: Difficulty in sit-to-stand was perceived by caregivers to reduce their child's ability to independently and safely perform mobility and some self-care tasks; and negatively impacted the caregivers physically and psychologically. Mobility and self-care WeeFIM scores showed that these children required moderate assistance, and that self-care tasks involving sit-to-stand (toileting and bathing) required more assistance than self-care tasks that would not be expected to involve sit-to-stand (eating and grooming). Qualitative and quantitative findings were convergent. CONCLUSIONS: The ability to sit-to-stand independently may be an important precursor skill for independence in upright mobility and self-care for children with moderate to severe mobility limitations.

Factors influencing commencement and adherence to a home-based balance exercise program for reducing risk of falls: perceptions of people with Alzheimer's disease and their caregivers.

BACKGROUND: Balance exercise is an important component of falls-prevention interventions, with growing evidence that it can be beneficial for people with Alzheimer's disease (AD). However, to implement a balance exercise program successfully for people with AD it is important to consider factors that can affect commencement and adherence to the program. This qualitative study explored these factors. METHODS: Ten participants with AD, who had completed a six-month home-based balance exercise program, and their caregivers (n = 9) participated. A phenomenological theoretical framework with semi-structured interviews was used for data collection and analysis. RESULTS: Factors influencing the decision to commence the program were: possible benefits of the program, recommendations from health professionals, value of research, positive attitude towards exercise, and minimizing caregivers' burden. Factors influencing adherence to the program were grouped under 11 themes: six themes facilitated completion (program characteristics, physiotherapist, exercise recording sheet, caregivers' support, sense of commitment, and perceived benefit) and five themes were barriers (pre-existing conditions, dislike of structured exercise, absence from home, caregiver's health or commitment, and bad weather). CONCLUSIONS: A home-based exercise program with regular support from a physiotherapist and caregiver are key elements facilitating continuing program adherence in people with AD.

Exploring the reliability and validity of the social-moral awareness test.

BACKGROUND: The aim of the study was to explore the validity of the social-moral awareness test (SMAT) a measure designed for assessing socio-moral rule knowledge and reasoning in people with learning disabilities. Comparisons between Theory of Mind and socio-moral reasoning allowed the exploration of construct validity of the tool. Factor structure, reliability and discriminant validity were also assessed. MATERIALS AND METHODS: Seventy-one participants with mild-moderate learning disabilities completed the two scales of the SMAT and two False Belief Tasks for Theory of Mind. RESULTS: Reliability of the SMAT was very good, and the scales were shown to be uni-dimensional in factor structure. There was a significant positive relationship between Theory of Mind and both SMAT scales. CONCLUSIONS: There is early evidence of the construct validity and reliability of the SMAT. Further assessment of the validity of the SMAT will be required.

Effect of eccentric exercise on quality of life and function in people with chronic heart failure: a pilot randomised controlled trial.

PURPOSE: To determine if eccentric exercise was effective, safe and feasible in increasing function and quality of life in people with heart failure compared to usual care and a waitlist control group. METHODS: A prospective, three-armed, parallel-design, assessor-blind, pilot randomised controlled trial with 1:1:1 allocation. Forty-seven participants (16 female; mean age 66 years) with mild to moderate heart failure were randomly allocated to either eccentric exercise, concentric exercise or a waitlist control group. Participants in the exercise groups completed twice-weekly exercise for eight weeks. Primary outcome was walking capacity. Secondary outcomes were quality of life, leg strength and fatigue. Outcomes were assessed at baseline, post intervention and three-month follow-up. Attendance, tolerability and adverse events were used to determine safety and feasibility. RESULTS: Intention-to-treat analysis showed no differences between eccentric exercise and either concentric exercise or waitlist for any outcome. Per-protocol analysis found improvements identified by the Minnesota living with heart failure questionnaire were significantly greater post-intervention for eccentric exercise compared to concentric exercise (-17.99 units, 95% confidence interval -35.96 to -0.01). No major adverse events were reported. CONCLUSION: In this small trial, eccentric exercise did not demonstrate superior outcomes to concentric exercise or a waitlist control group. CLINICAL TRIAL REGISTRATION: The protocol for this trial was registered at clinicaltrials.gov, registration number: NCT02223624, registration date: 22 August 2014.IMPLICATIONS FOR REHABILITATIONRegular physical activity and referral to rehabilitation is recommended for people with chronic heart failure, however exercise can be challenging for this group.Eccentric exercise was safe and tolerable for participants with heart failure.Documentation of exercise progression is important to demonstrate a dose-response relationship.In this study there were no differences between groups who received eccentric exercise, concentric exercise or no exercise.

Retest reliability of balance and mobility measurements in people with mild to moderate Alzheimer's disease.

BACKGROUND: To interpret changes of balance and mobility in people with Alzheimer's disease (AD), we require measures of balance and mobility that have demonstrated reliability in this population. The aim of the study was to determine the safety, feasibility and retest reliability of clinical and forceplate balance and mobility measurements in people with AD. METHODS: Relative and absolute reliabilities were examined in 14 older people with mild to moderate AD. Relative reliability was calculated using the intraclass correlation coefficient, two-way mixed model (ICC3,1). Absolute reliability was calculated using the standard error of measurement (SEM), the minimum detectable change (MDC) and the coefficient of variation (CV). RESULTS: All measurements were clinically feasible and could be safely administered. ICC values were excellent and CVs were less than 11% in all clinical balance and mobility measures except the Timed Up & Go test with cognitive or manual task (ICC3,1 = 0.5 and 0.7, and CV = 14% and 10%, respectively). Most balance and mobility measures tested on the Neurocom™ forceplate (modified Clinical Test of Sensory Interaction on Balance, Walk Across (step width, step length parameters), and Sit to Stand (rising index parameter)) had excellent relative reliability (ICC3,1 ranging from 0.75 to 0.91). ICC values were fair to good for the other measures. CONCLUSIONS: Retest reliability of the balance and mobility measures used in this study ranged between fair to good, and good to excellent. Clinicians should consider retest reliability when deciding which balance and mobility measures are used to assess people with AD.