Introduction Information on disability is an important component of health information, as it shows how well an individual is able to function in general areas of life Along with traditional indicators of a population's health status, such as mortality and morbidity rates, disability has become important in measuring disease burden, in evaluating the effectiveness of health interventions and in planning health policy Defining and measuring disability, however, has been challenging The World Health Organization (WHO) has tried to address the problem by establishing an international classification scheme known as the International Classification of Functioning, Disability and Health (ICF) (1) Nevertheless, all standard instruments for measuring disability and health need to be linked conceptually and operationally to the ICF to allow comparisons across different cultures and populations To address this need for a standardized cross-cultural measurement of health status and in response to calls for improving the scope and cultural adaptability of the original World Health Organization Disability Assessment Schedule (WHODAS), (2-9) WHO developed a second version (WHODAS 20) as a general measure of functioning and disability in major life domains This paper reports on the development strategy and the metric properties of the WHODAS 20 Conceptual framework for WHODAS 20 The WHODAS 20 is grounded in the conceptual framework of the ICF and captures an individual's level of functioning in six major life domains: (i) cognition (understanding and communication); (ii) mobility (ability to move and get around); (iii) self-care (ability to attend to personal hygiene, dressing and eating, and to live alone); (iv) getting along (ability to interact with other people); (v) life activities (ability to carry out responsibilities at home, work and school); (vi) participation in society (ability to engage in community, civil and recreational activities) All domains were developed from a comprehensive set of ICF items and made to correspond directly with ICF's "activity and participation" dimension (Table 1), which is applicable to any health condition For all six domains, the WHODAS 20 provides a profile and a summary measure of functioning and disability that is reliable and applicable across cultures in adult populations The WHODAS 20 is used for many purposes It can be used for conducting population surveys, (10-15) for registers (16) and for monitoring individual patient outcomes in clinical practice and in clinical trials of treatment effects (17-27) Methods The WHODAS 20 was constructed through a process involving extensive review and field-testing, as described in the following sections Existing measures In preparation for the development of the WHODAS 20, we conducted a review of existing measurement instruments and of the literature on the conceptual aspects and measurement of functioning and disability The instruments we chose included various measures of disability, handicap, quality of life and other aspects of health, such as the ability to perform the activities of daily living (including instrumental ones), as well as global and specific measures of well-being (including subjective well-being) (28,29) We compiled information from more than 300 instruments in a database showing a common pool of items, along with the origin and known psychometric properties of each instrument An Instrument Development Task Force composed of international experts reviewed the database and pooled the items in it using the ICF as the common framework Research study and field testing Since the WHODAS 20 was developed primarily to allow cross-cultural comparisons, it was based on an extensive cross-cultural study spanning 19 countries around the world (30) The items included in the WHODAS 20 were selected after exploring how health status is assessed in different cultures through a process that involved linguistic analysis of health-related terms, interviews with key informants and focus group discussions, as well as qualitative methods (e …

Developing the World Health Organization Disability Assessment Schedule 2.0/developpement De L'outil Disability Assessment Schedule 2.0 De l'OMS/Evolucion del Programa De Evaluacion De la Discapacidad 2.0 De la Organizacion Mundial De la Salud

Background: Improving outcome data collection rates is an essential part of managing clinical trials and ensures statistical power and generalisability of results are maintained. Studies within a trial (SWATs) provide a robust methodology to investigate the most efficient methods to maximise outcome follow-up. Methods: LoTS2Care, a feasibility cluster Randomised Controlled Trial, recruited 269 stroke survivors across 10 services, and incorporated a SWAT to evaluate the effect of questionnaire booklet format (one booklet or two) on follow-up rates for self-reported postal outcomes at 6 and 9 months post-recruitment. Available participants were individually randomised (1 : 1) by the Clinical Trials Research Unit and follow-up rates in the two groups were compared. Results: At 6 months post-recruitment, 254 participants were randomised: 126 to receive (125 posted) the single booklet; 128 to receive two booklets. By 9 months post-recruitment, 116 and 123 participants were still available in each group, respectively. For participants randomised to two booklets, return of at least one of the booklets was considered as ‘followed-up’. At 6 months, 114/125 (91.2%) participants sent the single booklet returned it, compared to 108/128 (84.4%) sent two (odds ratio (OR) 1.92, 95% confidence interval (CI) 0.88 to 4.19). By 9 months, 108/116 (93.1%) participants returned the single booklet, compared to 105/123 (85.4%) sent two (OR 2.31, 95% CI 0.97 to 5.55). Conclusions: The SWAT was an inexpensive, straightforward way to test how booklet format affected follow-up rates. Larger participant numbers would be required for conclusive results. These initial findings, however, suggest that including all outcome measures in a single booklet may maximise return rates, especially in trials with similar populations, such as those living with brain injury, cognitive or speech impairment or older people.

https://journals.sagepub.com/doi/pdf/10.1177/26320843221106952

Is two better than one? Maximising follow-up of self-reported outcome measures for a stroke survivor population: Results from a study within a trial in the LoTS2Care feasibility study

Sedentary behaviour (sitting or lying during waking hours without being otherwise active) is strongly associated with adverse health outcomes, including all-cause, cancer and cardiovascular mortality in adults. Stroke survivors are consistently reported as being more sedentary than healthy age-matched controls, spending more hours sedentary daily and sustaining longer unbroken bouts of sedentary time. An evidence-based and clinically feasible intervention ('Get Set Go') was developed. A pragmatic definitive trial to evaluate Get Set Go was planned; however, due to the unprecedented effects of the COVID-19 pandemic on National Health Service (NHS) services this study was reduced in size and scope to become an external pilot trial. We report the protocol for this external pilot trial, which aims to undertake a preliminary exploration of whether Get Set Go is likely to improve ability to complete extended activities of daily living in the first year post-stroke and inform future trial designs in stroke rehabilitation.This study is a pragmatic, multicentre, two-arm, external pilot cluster randomised controlled trial with embedded process and economic evaluations. UK-based stroke services will be randomised 1:1 to the intervention (usual care plus Get Set Go) or control (usual care) arm. Fifteen stroke services will recruit 300-400 stroke inpatient and carer participants, with follow-up at 6, 12 and 24 months. The proposed primary endpoint is stroke survivor self-reported Nottingham Extended Activities of Daily Living scale at 12 months. Endpoint analyses will be exploratory and provide preliminary estimates of intervention effect. The process evaluation will provide valuable information on intervention fidelity, acceptability and how it can be optimised.The study has been approved by Yorkshire and The Humber - Bradford-Leeds Research Ethics Committee (Ref: 19/YH/0403). Results will be disseminated through journal publications and conference presentations.This trial was registered prospectively on 01 April 2020 (ISRCTN ref: ISRCTN82280581). 

RECREATE: a study protocol for a multicentre pilot cluster randomised controlled trial (cRCT) in UK stroke services evaluating an intervention to reduce sedentary behaviour in stroke survivors (Get Set Go) with embedded process and economic evaluations

Abstract Background To address the limited provision of longer-term stroke care, we conducted a programme of research (LoTS2Care) to develop and test an intervention to form part of a replicable longer-term care strategy. New Start, a programme of facilitated self-management, was developed to be delivered at 6 months post-stroke by trained facilitators. Here, we report the findings from the final workstream of this programme, which aimed to evaluate the feasibility and acceptability of implementing a future definitive cluster randomised controlled trial of the developed intervention (New Start) to support stroke survivors and their carers in the longer term. Methods A feasibility cluster randomised controlled trial was conducted in English and Welsh NHS stroke services. Stroke services (clusters) were randomised on a 1:1 basis to implement New Start or continue with usual care only. Community-dwelling stroke survivors between 4 and 6 months post-stroke were invited to participate in the trial by post. Outcome measures were collected via post at 3, 6 and 9 months after recruitment. Recruitment and follow-up rates, delivery and uptake of the intervention, data collection feasibility (including postal outcome measures of health and disability, mental well-being at 3, 6, and 9 months post-recruitment) and safety were assessed. Results Ten stroke services were recruited. A total of 1127 stroke survivors were screened for participation, and 269 were registered (New Start, n = 145; usual care, n = 124). Retention was high with 239 (89%) stroke survivors being available for follow-up at 9 months, and high return rates of postal questionnaires were achieved (80.3% at 9 months). Intervention training was successfully delivered, and New Start was offered to 95.2% of trial participants in the intervention arm. Uptake was variable, however, ranging from 11.8 to 75.0%. There were no safety concerns. Conclusions Stroke service recruitment and longer-term stroke survivor postal recruitment and outcome data collection are feasible; however, refinement of intervention targeting and delivery is required prior to undertaking a definitive trial. Trial registration ISRCTN38920246. Registered 22 June 2016 ( http://www.isrctn.com/ISRCTN38920246 ). 

/pdf/an-intervention-to-support-stroke-survivors-and-their-carers-1l2u5fm8.pdf

An intervention to support stroke survivors and their carers in the longer term: results of a cluster randomised controlled feasibility trial (LoTS2Care)

Objectives: 1. To identify validated quantitative Patient Reported Experience Measures (PREM's) being used in Community Rehabilitation and/or Support services for people with long term neurological conditions (PwLTNC). 2. To explore how data from quantitative PREM's adds to research on patient experiences of Community Rehabilitation and Support for PwLTNC.Method: Eight data bases were searched for peer reviewed studies (2005-2021) which met inclusion criteria. Data extraction and quality assessment for sixteen studies was performed by two reviewers. Narrative synthesis was conducted.Results: Eleven validated PREM's were identified which captured data for 15,831 PwLTNC. PREM scores indicated positive and negative experiences for people with Multiple Sclerosis (n = 13,123), Parkinson's Disease (n = 2215) and Acquired Brain Injury (n = 493). Negative experiences related to Picker Institute Principles: 1 (accessibility); 3 (coordination/continuity); 4 (involvement/support for family and carers); 5 (information provision), 6 (Involvement in decision making) and 7 (empathy and emotional support).Conclusion: Quantitative PREM's provide evidence of process quality and person-centred care within community rehabilitation and support services across large data sets of heterogeneous neurological conditions and geographical locations. Quality improvement initiatives for people with MS, PD and ABI should target processes relating to Picker Institute Principles 1,3,4,5,6, and 7.Implications for RehabilitationQuantitative validated Patient Reported Experience Measures can be used to evaluate process quality and person- centred care within community rehabilitation and support services for people with long term neurological conditions.Experiences of people with Multiple Sclerosis, Parkinson's Disease and Acquired Brain Injury indicate the need for quality improvement in community rehabilitation.Training in communication skills and person-centred care may enhance information provision and support for self-management for people with long term neurological conditions. 

Patient reported experiences of community rehabilitation and/or support services for people with long term neurological conditions: a narrative review of quantitative studies.

Background

It is reported that the longer-term outcomes for stroke survivors are poor, with a range of unmet needs identified.



Objectives

The aims were to develop and test a longer-term stroke care strategy focused on improving the quality of life of stroke survivors and their carers by addressing unmet needs, and maintenance and enhancement of participation (i.e. involvement in life situations).



Design

Five overlapping workstreams were undertaken – (1) refinement of content by semistructured interviews with stroke survivors and their carers and by a review of the literature to inform content and delivery of the care strategy; (2) exploration of service models by national survey and focus groups with purposely selected services; (3) intervention development by interaction with a reference group of stroke survivors, carers, and health and social care professionals; (4) refinement and pilot implementation of the developed intervention in three stroke services (case studies); and (5) a cluster randomised controlled feasibility trial in 10 stroke services across England and Wales.



Setting

The intervention development work and feasibility trial were in stroke services (inclusive of primary, secondary, community and social care provision) across England and Wales.



Participants

Participants were stroke survivors resident in the community and their carers, and health and social care professionals in the included stroke services.



Data sources

Interviews with 28 stroke survivors and their carers at least 9 months post stroke ascertained their needs and the barriers to and facilitators of addressing those needs. Additional literature reviews identified 23 needs. No evidence-based interventions to address these needs were reported; self-management was highlighted as a possible delivery mechanism. In workstream 2, a national survey revealed that the most common model of stroke service provision was care up to 12 months post stroke, reported by 46 (40%) services. Thirty-five (30%) services provided care up to 6 months post stroke and 35 (30%) provided care beyond 12 months, thus identifying 6 months post stroke as an appropriate delivery point for a new intervention. Through focus groups in a range of services, stroke survivors’ perceived unmet needs and the barriers to and enablers of service provision were identified.



Intervention

Using information obtained in workstreams 1 and 2 and working closely with a stakeholder reference group, we developed an intervention based on the unmet needs prioritised by stroke survivors and their carers (workstream 3). In workstream 4, action groups (clinicians, stroke survivors and researchers) were established in three stroke services that led implementation in their service and contributed to the iterative refinement of the intervention, associated training programme and implementation materials. The intervention (called New Start) was delivered at 6 months post stroke. Key components were problem-solving self-management with survivors and carers, help with obtaining usable information, and helping survivors and their carers build sustainable, flexible support networks.



Results

A cluster randomised feasibility trial (workstream 5) was successfully implemented in 10 stroke services across England and Wales, with associated process and health economic evaluations. Five services were randomised to provide New Start, while five continued with usual care; 269 participants were recruited. Progression criteria – in terms of our pre-determined (red, amber, green) criteria for progress to a full trial: target stroke survivor recruitment rates were achieved, on average, across sites (24.1 per site over 6 months, green); 216 (80.3%) registered stroke survivors returned follow-up questionnaires at 9 months (84.1% in the intervention arm and 75.8% in the usual care arm, green); according to data reported by sites, overall, 95.2% of registered stroke survivors were offered at least one session of the intervention (green); all five intervention sites had at least two facilitators deemed competent, delivered the New Start intervention and provided it to stroke survivors (green). However, at some sites, there were concerns regarding the number of stroke survivors being offered, accepting and receiving the intervention. Only small differences in outcomes and costs were observed between the New Start and usual care groups, and considerable uncertainty around the cost-effectiveness remains.



Conclusions

We report a complex programme of work that has described the longer-term needs of stroke survivors and highlighted evidence and service gaps. Working closely with stroke survivors, an intervention was developed that has been refined in three services and feasibility tested in a cluster randomised controlled trial. Further refinement of the target population and optimisation of the intervention materials is required prior to a full randomised controlled trial evaluation.



Future work

Optimisation of the intervention, and clearer specification of recipients, are required prior to a full trial evaluation.



Trial registration

Current Controlled Trials ISRCTN38920246.



Funding

This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 3. See the NIHR Journals Library website for further project information.

/pdf/longer-term-health-and-social-care-strategies-for-stroke-3h5ja7ncke.pdf

Longer-term health and social care strategies for stroke survivors and their carers: the LoTS2Care research programme including cluster feasibility RCT

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Longer-term health and social care strategies for stroke survivors and their carers: the LoTS2Care research programme including cluster feasibility RCT