Carer Strain Index Research Articles

The Lived Experience of Frailty: Are Frailty Intervention Teams Adding to Patient Quality of Life?

Abstract Background Numerous clinical tools are used to identify and quantify frailty, but the lived experience of frailty is not consistently measured or considered in clinical practice. The project aim was to understand the health perceptions of older adults treated by the Frailty Intervention Team (FIT) and establish if the team has an impact on care burden. Methods Participants were recruited from a hospital based, out-patient Frailty Intervention Clinic over a 4-month period. Older adults were classified as frail by the Clinical Frailty Scale (CFS). The lived experience of frailty was assessed via the EQ 5D 5L a self-rated quality of life measure with a visual analogue scale (EQ VAS). The impact of frailty on carers was examined by the Carer Strain Index (CSI). These subjective measures were recorded on initial assessment and 2 months post intervention. Results 31 individuals were assessed (male n=13, female n=18). The average CFS was 4.98 (4.91 male, 5.05 female), indicative of ‘Living with Mild Frailty’. 74.19% of participants (male n=9, female n=14) responded to the follow up questionnaires. Pre-intervention, EQ VAS average responses were 42.5/100 for males and 49.33/100 for females. Two months post intervention improvements were observed in both males and females with scores of 72.77/100 and 62.5/100 respectively. CFS ratings remained unchanged post intervention. 29% of carers reported a CSI of greater than 7/12 pre intervention – indicating high level of carer burden. Post intervention this figure reduced to 9.6% of carers. Conclusion This FIT model adds positively to the lives of older adults in a holistic manner. The average participant rated their health positively post intervention despite being classified as ‘Living with Mild Frailty’. This underscores that the patient is the expert of their own experience and challenges the negative perceptions of frailty. Highlighting the need for a holistic understanding of frailty beyond classification scales.

A programme evaluation of ‘First Steps’: A peer-conceived, developed and led self-management intervention for people after a Parkinson's diagnosis

Objective A diagnosis of Parkinson's often leads to uncertainty about the future and loss of perceived control. Peer support may offer a means to address these concerns and promote self-management. Design A programme evaluation of the feasibility and potential effects of ‘First Steps’, utilising a pragmatic step wedge approach. Comparing First Steps (intervention) to (control) conditions. Setting: In the community at four sites in southern England. Participants: Newly diagnosed (≤ 12months) people with Parkinson's. Intervention: First Steps was a 2-day peer-conceived, developed and led intervention to support self-management. Main measures: At 0, 12 and 24 weeks anxiety and depression (Hospital, Anxiety and Depression Scale, HADS), daily functioning (World Health Organisation Disability Assessment Schedule, WHODAS), physical activity, quality of life (EQ5D), carer strain and service utilisation were assessed. Results Between February 2018 and July 2019, 36 participants were enrolled into intervention and 21 to control conditions, all were included in statistical analysis. Lost to follow up was n = 1 (intervention) and n = 1 adverse event was reported (control, unrelated). Of the 36 allocated to the intervention n = 22 participants completed both days of First Steps during the study period. Completion of outcome measures was >95% at 24 weeks. Small effects favouring the intervention were found for HADS (odds ratio (OR) = 2.06, 95% confidence interval (CI) 0.24:17.84), Carer Strain Index (OR = 2.22, 95% CI 0.5:9.76) and vigorous (d = 0.42, 95% CI −0.12:0.97) and total physical activity (d = 0.41, 95% CI −0.13:0.95). EQ5D, WHOSDAS and service utilisation, was similar between groups. Conclusions First Steps was feasible and safe and we found potential to benefit physical activity, mental health and carer strain. Further research with longer-term follow up is warranted.

Group cognitive rehabilitation to reduce the psychological impact of multiple sclerosis on quality of life: the CRAMMS RCT.

People with multiple sclerosis have problems with memory and attention. The effectiveness of cognitive rehabilitation has not been established. The objectives were to assess the clinical effectiveness and cost-effectiveness of a cognitive rehabilitation programme for people with multiple sclerosis. This was a multicentre, randomised controlled trial in which participants were randomised in a ratio of 6 : 5 to receive cognitive rehabilitation plus usual care or usual care alone. Participants were assessed at 6 and 12 months after randomisation. The trial was set in hospital neurology clinics and community services. Participants were people with multiple sclerosis who had cognitive problems, were aged 18-69 years, could travel to attend group sessions and gave informed consent. The intervention was a group cognitive rehabilitation programme delivered weekly by an assistant psychologist to between four and six participants for 10 weeks. The primary outcome was the Multiple Sclerosis Impact Scale - Psychological subscale at 12 months. Secondary outcomes included results from the Everyday Memory Questionnaire, the 30-Item General Health Questionnaire, the EuroQol-5 Dimensions, five-level version and a service use questionnaire from participants, and the Everyday Memory Questionnaire - relative version and the Modified Carer Strain Index from a relative or friend of the participant. Of the 449 participants randomised, 245 were allocated to cognitive rehabilitation (intervention group) and 204 were allocated to usual care (control group). Of these, 214 in the intervention group and 173 in the control group were included in the primary analysis. There was no clinically important difference in the Multiple Sclerosis Impact Scale - Psychological subscale score between the two groups at the 12-month follow-up (adjusted difference in means -0.6, 95% confidence interval -1.5 to 0.3; p = 0.20). There were no important differences between the groups in relation to cognitive abilities, fatigue, employment, or carer strain at follow-up. However, there were differences, although small, between the groups in the Multiple Sclerosis Impact Scale - Psychological subscale score at 6 months (adjusted difference in means -0.9, 95% confidence interval -1.7 to -0.1; p = 0.03) and in everyday memory on the Everyday Memory Questionnaire as reported by participants at 6 (adjusted difference in means -5.3, 95% confidence interval -8.7 to -1.9) and 12 months (adjusted difference in means -4.4, 95% confidence interval -7.8 to -0.9) and by relatives at 6 (adjusted difference in means -5.4, 95% confidence interval -9.1 to -1.7) and 12 months (adjusted difference in means -5.5, 95% confidence interval -9.6 to -1.5) in favour of the cognitive rehabilitation group. There were also differences in mood on the 30-Item General Health Questionnaire at 6 (adjusted difference in means -3.4, 95% confidence interval -5.9 to -0.8) and 12 months (adjusted difference in means -3.4, 95% confidence interval -6.2 to -0.6) in favour of the cognitive rehabilitation group. A qualitative analysis indicated perceived benefits of the intervention. There was no evidence of a difference in costs (adjusted difference in means -£574.93, 95% confidence interval -£1878.93 to £729.07) or quality-adjusted life-year gain (adjusted difference in means 0.00, 95% confidence interval -0.02 to 0.02). No safety concerns were raised and no deaths were reported. The trial included a sample of participants who had relatively severe cognitive problems in daily life. The trial was not powered to perform subgroup analyses. Participants could not be blinded to treatment allocation. This cognitive rehabilitation programme had no long-term benefits on quality of life for people with multiple sclerosis. Future research should evaluate the selection of those who may benefit from cognitive rehabilitation. Current Controlled Trials ISRCTN09697576. This project was funded by the National Institute for Health Research Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 4. See the National Institute for Health Research Journals Library website for further project information.

Behavioural activation therapy for post-stroke depression: the BEADS feasibility RCT.

There is currently insufficient evidence for the clinical effectiveness and cost-effectiveness of psychological therapies for post-stroke depression. To evaluate the feasibility of undertaking a definitive trial to evaluate the clinical effectiveness and cost-effectiveness of behavioural activation (BA) compared with usual stroke care for treating post-stroke depression. Parallel-group, feasibility, multicentre, randomised controlled trial with nested qualitative research and a health economic evaluation. Acute and community stroke services in three sites in England. Community-dwelling adults 3 months to 5 years post stroke who are depressed, as determined by the Patient Health Questionnaire-9 (PHQ-9) or the Visual Analogue Mood Scales 'Sad' item. Exclusions: patients who are blind and/or deaf, have dementia, are unable to communicate in English, do not have mental capacity to consent, are receiving treatment for depression at the time of stroke onset or are currently receiving psychological intervention. Participants were randomised (1 : 1 ratio) to BA or usual stroke care. Randomisation was conducted using a computer-generated list with random permuted blocks of varying sizes, stratified by site. Participants and therapists were aware of the allocation, but outcome assessors were blind. The intervention arm received up to 15 sessions of BA over 4 months. BA aims to improve mood by increasing people's level of enjoyable or valued activities. The control arm received usual care only. Primary feasibility outcomes concerned feasibility of recruitment to the main trial, acceptability of research procedures and measures, appropriateness of baseline and outcome measures, retention of participants and potential value of conducting the definitive trial. Secondary feasibility outcomes concerned the delivery of the intervention. The primary clinical outcome 6 months post randomisation was the PHQ-9. Secondary clinical outcomes were Stroke Aphasic Depression Questionnaire - Hospital version, Nottingham Leisure Questionnaire, Nottingham Extended Activities of Daily Living, Carer Strain Index, EuroQol-5 Dimensions, five-level version and health-care resource use questionnaire. Forty-eight participants were recruited in 27 centre-months of recruitment, at a recruitment rate of 1.8 participants per centre per month. The 25 participants randomised to receive BA attended a mean of 8.5 therapy sessions [standard deviation (SD) 4.4 therapy sessions]; 23 participants were allocated to usual care. Outcome assessments were completed by 39 (81%) participants (BA, n = 18; usual care, n = 21). Mean PHQ-9 scores at 6-month follow-up were 10.1 points (SD 6.9 points) and 14.4 points (SD 5.1 points) in the BA and control groups, respectively, a difference of -3.8 (95% confidence interval -6.9 to -0.6) after adjusting for baseline PHQ-9 score and centre, representing a reduction in depression in the BA arm. Therapy was delivered as intended. BA was acceptable to participants, carers and therapists. Value-of-information analysis indicates that the benefits of conducting a definitive trial would be likely to outweigh the costs. It is estimated that a sample size of between 580 and 623 participants would be needed for a definitive trial. Target recruitment was not achieved, although we identified methods to improve recruitment. The Behavioural Activation Therapy for Depression after Stroke trial was feasible with regard to the majority of outcomes. The outstanding issue is whether or not a sufficient number of participants could be recruited within a reasonable time frame for a definitive trial. Future work is required to identify whether or not there are sufficient sites that are able to deliver the services required for a definitive trial. Current Controlled Trials ISRCTN12715175. This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 47. See the NIHR Journals Library website for further project information.

Community Participation for People with Trauma Injuries: A Study Protocol of a Crossover Randomised Controlled Trial of the Effectiveness of a Community Mobility Group Intervention (CarFreeMe TI)

Background: Following traumatic brain and spinal cord injuries, maximising community participation leads to better physical and mental health outcomes.Objectives: To determine the effectiveness and health system resource use of a group intervention (CarFreeMe TI) on community participation in people with complex trauma injuries.Method: Randomised crossover trial of 54 participants, recruited from rehabilitation services in Adelaide, Australia. Inclusion criteria is a trauma injury, unable to return to full driving, aged over 18 years of age, adequate cognition/behavioural/communication abilities to participate in sessions and mobile. Exclusion criterion is living in setting where alternative transport is provided. Participants will be randomly assigned on a 1:1 allocation basis, to receiving Phase 1 CarFreeMe TI-group-based intervention or Phase 2 information related to transport options. Then, crossover to Phase 1 or 2 will occur. Primary outcome measure is community participation using a Global Positioning System. Secondary outcome measures include Community Mobility Self-efficacy Scale; CarFreeMe TI Transport Questionnaire, AQOL, EQ-5D-5L; Carer's Community Mobility Self-efficacy Scale and Modified Carer Strain Index for carers of participants. Outcome assessors will be blinded to group allocation. All analyses will be on an intention to treat basis with difference in community participation between the groups determined via a GLM ANOVA and the significance between groups on other measures using independent samplet-tests. It is hypothesised that the community mobility intervention (CarFreeMeTI) will result in increased community participation.Discussion: The results will provide proof of concept information on the feasibility and inform allocation of resources for people with complex trauma injuries.Trial registration: Australian and New Zealand Clinical Trials Register (ANZCTR): ACTRN12616001254482.

Psychometric Properties of the Needs Assessment Tool—Progressive Disease Cancer in U.K. Primary Care

BackgroundThe assessment of patients' needs for care is a critical step in achieving patient-centered cancer care. Tools can be used to assess needs and inform care planning. The Needs Assessment Tool:Progressive Disease–Cancer (NAT:PD-C) is an Australian oncology clinic tool for assessment by clinicians of patients' and carers' palliative care needs. This has not been validated in the U.K. primary care setting. AimThe aim of this study was to test the psychometric properties and acceptability of a U.K. primary care adapted NAT:PD-C. DesignReliability: NAT:PD-C–guided video-recorded consultations were viewed, rated, and rerated by clinicians. Weighted Fleiss' kappa and prevalence- and bias-adjusted kappa statistics were used. Construct: During a consultation, general medical practitioners (GPs) used NAT:PD-C, patient measures (Edmonton Symptom Assessment Scale; Research Utilisation Group Activities of Daily Living; Palliative care Outcome Score; Australian Karnofsky Performance Scale), and carer measures (Carer Strain Index; Carer Support Needs Assessment Tool). Kendall's Tau-b was used. Setting/ParticipantsGPs, nurses, patients, and carers were recruited from primary care practices. ResultsReliability: All patients' well-being items and four of five items in the carer/family ability to care section showed adequate interrater reliability. There was moderate test-retest reliability for five of six in the patients' well-being section and five of five in the carer/family ability to care section. Construct: There was at least fair agreement for five of six of patients' well-being items; high for daily living (Kendall's Tau-b = 0.57, P < 0.001). The NAT:PD-C has adequate carer construct validity (five of eight) with strong agreement for two of eight patients. Over three-quarters of GPs considered the NAT:PD-C to have high acceptability. ConclusionThe NAT PD-C is reliable, valid, and acceptable in the UK primary care setting. Effectiveness in reducing patient and carer unmet needs and issues regarding implementation are yet to be evaluated.

Chronic pain in persons with multiple sclerosis

Pain can be a significant long-term problem for a substantial proportion of persons with multiple sclerosis (pwMS). The aim of this study was to examine the course and impact of chronic pain over a span of 10-years. A longitudinal, cross-sectional study assessed pwMS residing in the community at seven and ten years using validated measures: Visual Analogue Scale; Numerical Rating Scale; Chronic Pain Grade (CPG); Assessment of Quality of Life and the Carer Strain Index (CSI). Mean age of the participants ( n = 70) was 59.8 ± 9 years (range: 39–74 years) and majority (70%) were female. The findings show that over 10-year period, majority report bilateral lower limb dysesthesia (40%), mixed pain (35.2%) and widespread pain (17.1%). There was a significant deterioration in quality of life (QoL) in those with more severe CPG. Almost half of the participants (44%) required care either from a private carer/family or institution. The carers ( n = 13) reported higher carer strain (mean CSI = 5.2), with over half reporting sleep disturbance, inconvenience, physical strains, family and personal constraints. Although fear of taking medications and side effects were common barriers to treatment for pain, there was an increase in the use of pharmacological treatment and healthcare services, mainly neurologists and general practitioners over time. This study demonstrates that persistent chronic pain is a significant issue over time in pwMS, with clinical and health implications, poorer QoL, and increased healthcare utilisation. Greater awareness of chronic pain in pwMS and interdisciplinary approach is required to improve long-term patient outcomes and well-being.

Chronic pain in multiple sclerosis: A 10-year longitudinal study

Background and purposePain is a common symptom associated with multiple sclerosis (MS), and has lasting effects on an individual's functional capacity and quality of life. A wide range of prevalence rates of pain (between 23% and 90%)have been reported in MS and this is mainly due to the methodological differences amongst the studies such as variability in patient sources, method of sampling and the definition of pain used. Chronic pain in MS, defined as pain lasting for greater than 3–6 months, can have a significant impact on their biopsychosocial health, including negative impact on activities of daily living, relationships and social participation. The long-term course of MS-related pain and its impact in an Australian cohort over a 7-year period has been investigated earlier. The aim of this longitudinal study was to describe the impact of chronic pain, pain-related disability and carer burden in persons with MS over a 10-year period. The aim of this longitudinal study was to describe the impact of chronic pain, pain-related disability and carer burden in persons with MS over a 10-year period. MethodsThis was a prospective longitudinal study conducted at the Rehabilitation Department of Royal Melbourne Hospital (RMH), a tertiary referral hospital in Victoria and Australia. The source of participants was from the RMH MS database and contains detailed MS patient information including demographic data, diagnosis details (using McDonald's criteria), pain characteristics. Structured face-face interviews and validated measures were used, which include the visual analogue scale (VAS); chronic pain grade (CPG); the assessment of quality of life (AQoL) and the carer strain index (CSI). The mean age of the participants (n=70) was 55.3 years and majority (70%) were female. ResultsThe mean age of the participants (n=70) was 55.3 years and majority (70%) were female. The findings show that over time (10 years), participants report having greater bilateral bodily pain and greater description of pain as ‘worse as it could be’. Pain types were similar to 7-years follow-up but remained higher than baseline. There was a significant deterioration in quality of life in those with more severe CPG over time. Almost half of the participants 31 (44%) required care either from a private carer, institution or from a family member. Although fear of taking medications and side effects were common barriers to treatment for pain, there was an increase in the use of pharmacological treatment over time and an increase in the use of healthcare services, mainly neurologists and general practitioners. ConclusionsThe pain measures reported by the participants were similar to those at the 7-year follow-up except there was a greater representation of bilateral pain locations (limb, trunk and facial pain) compared to baseline and 7-year follow-up. At 10-year follow-up, more participants used medications compared to 7-year follow-up and there was an increase in the use of health professionals at the 10-year follow-up. At the 10-year follow up QoL of the participants deteriorated significantly and more participants had progressed to higher CPG III and CPG IV. This study demonstrates that chronic pain is a significant issue over time in MS, with clinical and health implications, impact on quality of life, disability and healthcare utilization. ImplicationsGreater awareness of chronic pain in pwMS, cognitive classifications and an interdisciplinary approach is required to improve long-term patient outcomes and well-being.

Dysexecutive symptoms and carer strain following acquired brain injury: Changes measured before and after holistic neuropsychological rehabilitation.

Following acquired brain injury (ABI), deficits in executive functioning (EF) are common. As a result many brain-injured patients encounter problems in every-day functioning, and their families experience significant strain. Previous research has documented the benefits of cognitive rehabilitation for executive dysfunction, and rehabilitation programmes designed to ameliorate functional problems associated with ABI. This study primarily aims to evaluate whether a neuropsychological rehabilitation programme reduces reported symptoms of everyday dysexecutive behaviour and carer strain. In this study 66 ABI outpatients attended comprehensive holistic neuropsychological rehabilitation programme. A repeated-measures design was employed to determine the effect of rehabilitation on EF and carer strain, as part of a service evaluation. Outcome measures comprised the dysexecutive questionnaire (DEX/DEX-I) and carer strain index (CSI), applied pre- and post-rehabilitation. Results indicate rehabilitation benefited clients and carers in 5 of 6 DEX/DEX-I subscales, and 2 of 3 CSI subscales, (p < 0.05). An effect of aetiology on rehabilitation was found on the metacognitive scale of the DEX-I. Therefore, this study supports a comprehensive holistic neuropsychological rehabilitation programme as effective in reducing reported symptoms of dysexecutive behaviour and carer strain following ABI.

Cognitive Rehabilitation for Attention and Memory in people with Multiple Sclerosis: study protocol for a randomised controlled trial (CRAMMS).

BackgroundPeople with multiple sclerosis have problems with memory and attention. Cognitive rehabilitation is a structured set of therapeutic activities designed to retrain an individual’s memory and other cognitive functions. Cognitive rehabilitation may be provided to teach people strategies to cope with these problems, in order to reduce the impact on everyday life. The effectiveness of cognitive rehabilitation for people with multiple sclerosis has not been established.MethodsThis is a multi-centre, randomised controlled trial investigating the clinical and cost-effectiveness of a group-based cognitive rehabilitation programme for attention and memory problems for people with multiple sclerosis. Four hundred people with multiple sclerosis will be randomised from at least four centres. Participants will be eligible if they have memory problems, are 18 to 69 years of age, are able to travel to attend group sessions and give informed consent. Participants will be randomised in a ratio of 6:5 to the group rehabilitation intervention plus usual care or usual care alone. Intervention groups will receive 10 weekly sessions of a manualised cognitive rehabilitation programme. The intervention will include both restitution strategies to retrain impaired attention and memory functions and compensation strategies to enable participants to cope with their cognitive problems.All participants will receive a follow-up questionnaire and an assessment by a research assistant at 6 and 12 months after randomisation. The primary outcome is the Multiple Sclerosis Impact Scale (MSIS) Psychological subscale at 12 months. Secondary outcomes include the Everyday Memory Questionnaire, General Health Questionnaire-30, EQ-5D and a service use questionnaire from participants, and the Everyday Memory Questionnaire-relative version and Carer Strain Index from a relative or friend. The primary analysis will be based on intention to treat. A mixed-model regression analysis of the MSIS Psychological subscale at 12 months will be used to estimate the effect of the group cognitive rehabilitation programme.DiscussionThe study will provide evidence regarding the clinical and cost-effectiveness of a group-based cognitive rehabilitation programme for attention and memory problems in people with multiple sclerosis.Trial registrationISRCTN09697576. Registered 14 August 2014.

LIVING WITH CHRONIC HEART FAILURE

IntroductionPatients with chronic heart failure (CHF) have a prognosis worse than many cancers. Despite national policy, those receiving specialist palliative care (SPC) remain low. This study provides an updated overview...

British Indian carers of stroke survivors experience higher levels of anxiety and depression than White British carers: findings of a prospective observational study

Carers of stroke survivors face significant burdens, and increased carer strain has negative implications for both the stroke survivor and the carer. There are limited data on carer strain in the British Indian UK population. In a prospective cohort of White British and British Indian stroke survivors and their carers, we report the incidence of carer strain in each ethnicgroup, describe patient and carer characteristics, and identify predictors of increased carer strain. Forty-nine participants and their carers were of White British origin and 24 of Indian ethnic origin, whose first language was Gujarati or Punjabi.Multidimensional outcome measures were used to assess the physical and cognitive function in stroke survivors at one month and 3–6 months (final follow-up) from stroke onset. Levels of carer strain were assessed at the same time points using the Carer Strain Index and the Hospital Anxiety and Depression Scale. Statistical significance for difference in patient and carer characteristics between White British and British Indian groups was assessed. Logistic regression models were used to identify predictors of carer strain. British Indian stroke survivors had poorer scores on cognitive assessment (Mini Mental State Examination median 21, IQR 10.5–26.5 in British Indian, versus median 28.5, IQR 20–30, p=0.001) at one month. British Indian carers were younger, and reported higher levels of anxiety and depression at one month (medianHospital Anxiety and Depression Scale subscore depression 3.5 in White British, versus 7 in British Indian, P=0.002, median hospital anxiety and depression score total 10, versus 14, P=0.012). Twenty-four percent of all carers showed evidence of elevated carer strain (CSI>6) at one month, and 30% at final follow-up. There were no differences in levels of carer strain between the two ethnic groups. These findings will inform future research, and in turn, may help to guide population-targeted interventions aimed at reducing carer strain.

Carer quality of life and experiences of health services: a cross-sectional survey across three neurological conditions

BackgroundNeurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors. Support given to carers can lead to better coping. This study investigated the relationship between carer well-being and experiences with health and social services.MethodsA cross-sectional survey was conducted of 1910 (37.4%) of carers of 5109 people with motor neuron disease (MND) (n=434, 54.9%), multiple sclerosis (MS) (n=721, 30.7%) and Parkinson’s disease (PD) (n=755, 38.2%). Carers completed a generic health status measure (SF-12), a carer strain measure (Carer Strain Index- CSI) and a newly developed questionnaire on health and social care experiences. Data were analysed by analysis of variance with p set at <0.05.ResultsCarer well-being was found to be compromised and differed significantly between the three conditions. Furthermore, a considerable number of carers experienced problems with aspects of health and social care, although there was no clear pattern according to the condition that was cared for. The total number of problems reported did not differ significantly between conditions but was significantly (all p<0.001) associated with carer quality of life (both physical and mental health) and strain, even when other influencing factors (demographic and caregiving variables) were corrected for. The association was particularly strong for carer strain, and less strong (but still significant) for quality of life.ConclusionsThe results show that carer well-being is compromised, in line with previous studies. Furthermore, the link of carer well-being to the number of problems reported suggests that minimizing problems experienced could improve carer well-being. This stresses the importance of health and social services appropriately supporting carers.

Home-based reach-to-grasp training for people after stroke: study protocol for a feasibility randomized controlled trial.

BackgroundThis feasibility study is intended to assess the acceptability of home-based task-specific reach-to-grasp (RTG) training for people with stroke, and to gather data to inform recruitment, retention, and sample size for a definitive randomized controlled trial.Methods/designThis is to be a randomized controlled feasibility trial recruiting 50 individuals with upper-limb motor impairment after stroke. Participants will be recruited after discharge from hospital and up to 12 months post-stroke from hospital stroke services and community therapy-provider services. Participants will be assessed at baseline, and then electronically randomized and allocated to group by minimization, based on the time post-stroke and extent of upper-limb impairment. The intervention group will receive 14 training sessions, each 1 hour long, with a physiotherapist over 6 weeks and will be encouraged to practice independently for 1 hour/day to give a total of 56 hours of training time per participant. Participants allocated to the control group will receive arm therapy in accordance with usual care. Participants will be measured at 7 weeks post-randomization, and followed-up at 3 and 6 months post-randomization. Primary outcome measures for assessment of arm function are the Action Research Arm Test (ARAT) and Wolf Motor Function Test (WMFT). Secondary measures are the Motor Activity Log, Stroke Impact Scale, Carer Strain Index, and health and social care resource use. All assessments will be conducted by a trained assessor blinded to treatment allocation. Recruitment, adherence, withdrawals, adverse events (AEs), and completeness of data will be recorded and reported.DiscussionThis study will determine the acceptability of the intervention, the characteristics of the population recruited, recruitment and retention rates, descriptive statistics of outcomes, and incidence of AEs. It will provide the information needed for planning a definitive trial to test home-based RTG training.Trial registrationISRCTN: ISRCTN56716589

The impact of perceived lack of support provided by health and social care services to caregivers of people with motor neuron disease

Our objective was to investigate the relationship between support by health and social care services and caregiver well-being. A survey, including a generic health status measure (SF-12), a disease-specific measure for patients (ALSAQ-40), the Carer Strain Index (CSI) for caregivers and questions on experiences of health and social care services, was sent to patient members of the MND Association (UK) and their caregivers. A single 'problem score' was calculated from the experience questions and the relationship between the problem score with caregiver and patient well-being was analysed. Most caregivers reported at least one problem with support from services. The most common problems were services not valuing caregivers' experiences, and caregivers not feeling sufficiently involved in planning care. The problem score significantly increased with increasing caregiver strain and worsening mental health. The problem score was also increased as patient well-being decreased. The results suggest that caregiver strain was higher and mental health lower as the number of problems reported increased. A higher perceived lack of caregiver support was also related to a decrease in patient well-being, suggesting that caregivers' needs increase as the disease progresses. This emphasizes the importance of MND caregivers being appropriately supported by health and social care services in their caregiving role.

Taking charge after stroke: promoting self-directed rehabilitation to improve quality of life – a randomized controlled trial

Objective: Few community interventions following stroke enhance activity, participation or quality of life. We tested two novel community interventions designed to promote self-directed rehabilitation following stroke. Design: This was a randomized, controlled parallel group 2×2 trial. Setting: Community. Participants: Maori and Pacific New Zealanders, >15 years old, randomized within three months of a new stroke. Interventions: A DVD of four inspirational stories by Maori and Pacific people with stroke and a ‘Take Charge Session’ – a single structured risk factor and activities of daily living assessment, designed to facilitate self-directed rehabilitation. Main measures: Primary outcomes were Health-related Quality of Life (Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the Short Form 36 (SF-36)) 12 months from randomization. Secondary outcomes were Barthel Index, Frenchay Activities Index, Carer Strain Index and modified Rankin score. Results: One hundred and seventy-two people were randomized with 139 (80.8%) followed up at 12 months post randomization. The effect of the Take Charge Session on SF-36 PCS at 12 months was 6.0 (95% confidence interval (CI) 2.0 to 10.0) and of the DVD was 0.9 (95% CI −3.1 to 4.9). Participants allocated to the Take Charge Session were less likely to have a modified Rankin score of >2 (odds ratio (OR) 0.42, 95% CI 0.2 to 0.89) and their carers had lower (better) Carer Strain Index scores (−1.5, 95% CI −2.8 to −0.1). Conclusion: A simple, low-cost intervention in the community phase of stroke recovery aiming to promote self-directed rehabilitation improved outcomes.

Factors associated with quality of life and caregiver strain amongst frail older adults referred to a community rehabilitation service: implications for service delivery

Purpose. To identify factors contributing to reduced quality of life and increased caregiver strain in an older population referred to a community rehabilitation team and to recommend service delivery models.Methods. Analytical cross-sectional study arising from baseline assessments from 107 subjects drawn from a randomised controlled trial of community rehabilitation service delivery models.Setting. A community rehabilitation team based in Brisbane, Queensland, Australia.Measures. Primary outcome variables include quality of life (EQ-5D & VAS) and Carer Strain Index. Predictor variables include participation in functional activities, history of falls, number of medications, number of co-morbidities, depression, environmental hazards, physical function and nutrition. Association between variables assessed using linear regression.Results. Major factors contributing to reduced quality of life were having reduced participation in daily activities, depression, and having poor vision. Having poor nutrition and no longer driving also contributed to poor quality of life. The major factor contributing to increased caregiver strain was reduced participation in daily activities by the older person.Conclusions. Community rehabilitation services working with older populations must adopt models of care that screen for and address a wide range of factors that contribute to poor quality of life and caregiver strain.

Structured re-assessment system at 6 months after a disabling stroke: a randomised controlled trial with resource use and cost study

national policy recommends routine re-assessment of disabled patients and their carers at 6 months after stroke onset. The clinical and resource outcomes of this policy were investigated. prospective, single-blind, randomised controlled trial in two centres. a total of 265 patients with a disabling stroke and their carers. a structured re-assessment system for patients and their carers at 6 months post-stroke or existing care. primary: patient independence (Frenchay activities index) and carer stress (general health questionnaire 28). Secondary: activities of daily living, mood state, satisfaction with services, carer strain index, health and social service resource use and costs. independence at 12 months post-stroke was similar in both groups (Frenchay activities index, adjusted mean difference 0.64; 95% confidence interval -0.74-2.02). Emotional distress in carers was similar in both groups (general health questionnaire 28, mean difference 0.02; 95% confidence interval -0.95-1.00). Results for the secondary outcome measures and total mean costs were similar for both groups. The intervention group patients used 301 fewer hospital bed days and 1,631 fewer care home bed days. the structured, systematic re-assessment for patients and their carers was not associated with any clinically significant evidence of benefit at 12 months. Health and social care resource use and mean cost per patient were broadly similar in both groups. International Standard Randomised Controlled Trial Register; number: ISRCTN55412871.

Goal achievement in the six months after inpatient rehabilitation for stroke

Purpose. The purpose of the project was to identify characteristics associated with successful re-integration into the community post-inpatient rehabilitation after stroke. A key issue was determining re-integration from the person's perspective, taking into account the person's preferred lifestyle choices.Method. Research design: A prospective exploratory follow up study. Participants: A consecutive sample of 45 participants discharged from IP rehabilitation following stroke and 23 carers associated with the participants. Measures: Goal attainment scaling was utilised to determine successful community integration. Factors that may have contributed to goal achievement were measured prior to discharge and at 6 months post-discharge. Scales used include the Functional Independence Measure, Mini Mental test, the CES-D depression scale and a self-efficacy scale, Strategies Used by People to Promote Health. London Handicap Scale scores and Carer Strain Index were collected at 6 months.Results. Twenty percent of participants achieved all their goals. Significant correlations were observed between goal achievement score and concurrent measures of physical function, depression and self efficacy at 6 months post-discharge.Conclusions. Stroke survivors who achieved their goals were less likely to be depressed, showed stronger self efficacy beliefs and more positive perceptions of their participation in everyday and community life.

Expanding the role of the stroke nurse: a pragmatic clinical trial

This paper reports a study evaluating whether expanding a specialist nursing role to provide outreach education and support to stroke patients and carers after discharge from hospital is effective in promoting recovery. Building therapeutic relationships with patients and carers is a key component of the nursing role in stroke rehabilitation, although this is limited by the constraints of service organization. A pragmatic randomized controlled trial was undertaken. Patients with a diagnosis of stroke were randomized to receive continued support from a stroke nurse (n = 87) or usual care and follow-up (n = 89) after discharge from hospital. Patients were recruited from two hospitals in the north-west of England from November 1999 to April 2001. Patient dependence (Barthel Index), general health (Nottingham Health Profile), activities of living (Frenchay Activity of Living Index), depression (Beck Depression Inventory) and carer strain (Carer Strain Index) were assessed at 3 and 12 months after stroke. The continued intervention of a stroke nurse after discharge was associated with improved patient perceptions of general health at 12 months (median difference 42.6, P = 0.012), and in particular reduced negative emotional reaction (P = 0.037) and perceived social isolation (P = 0.002). In addition, the intervention reduced carer strain at 3 months (P = 0.045), and reduced deterioration in physical dependence from 3 to 12 months (P = 0.049). The provision of continued intervention from a stroke nurse after discharge from hospital, focusing on education and support, has tangible benefits for patients and carers.