Delphi consensus study and clinical practice guideline development for functional electrical stimulation to support upright mobility in people with an upper motor neuron lesion.

PURPOSE: A Clinical Practice Guideline (CPG) is required to provide guidance on optimal service delivery for Functional Electrical Stimulation (FES) to support upright mobility in people living with mobility difficulties due to an upper motor neuron lesion, such as stroke or multiple sclerosis. A modified Delphi consensus study was used to provide expert consensus on best practice. METHODS: A Steering Group supported the recruitment of an Expert Panel, which included a range of stakeholders who participated in up to three survey rounds. In each round, panelists were asked to rate their agreement with draft statements about best practice using a 6-point Likert scale and add free text to explain their answer. Statements that achieved over 75% agree/strongly agree on the Likert scale were included in the CPG. Those that did not were revised based on free text comments and proposed in the next survey round. RESULTS: The first round included 82 statements with seven substatements. Sixty-five people (84% response rate) completed survey round 1 leading to 62 statements and four substatements being accepted. Fifty-six people responded to survey round 2, and consensus was achieved for all remaining statements. CONCLUSION: The accepted statements are included within the CPG and provide recommendations about who can benefit from FES and how they can be optimally supported through FES service provision. As such the CPG will support advocacy for, and optimal design of, FES services.

Diagnostic assessment of autism in adults - current considerations in neurodevelopmentally informed professional learning with reference to ADOS-2.

Services for the assessment and diagnosis of autism in adults have been widely criticized and there is an identified need for further research in this field. There is a call for diagnostic services to become more accessible, person-centered, neurodiversity affirming, and respectful. There is a need for workforce development which will increase capacity for diagnostic assessment and support for adults. ADOS-2 is a gold-standard diagnostic assessment tool for autism recommended in clinical guidelines. However, diagnostic procedures such as the ADOS-2 are rooted in the medical model and do not always sit comfortably alongside the neurodiversity paradigm or preferences of the autistic community. Training and educational materials need to account for the differences between these approaches and support clinicians to provide services which meet the needs of the adults they serve. The National Autism Implementation Team worked alongside ADOS-2 training providers to support clinicians in Scotland, to provide effective and respectful diagnostic assessment. The team engaged with clinicians who had attended ADOS training to identify areas of uncertainty or concern. Training materials were developed to support ADOS assessors to incorporate key principles including "nothing about us without us"; "difference not deficit"; "environment first"; "diagnosis matters," "language and mindsets matter"; and "a neurodevelopmental lens," to support the provision of neurodiversity affirming assessment practice. The National Autism Implementation Team also provided examples of actions which can be undertaken by clinicians to improve the assessment experience for those seeking a diagnosis. Training materials are based on research evidence, clinical experience, and the needs and wishes of autistic people.

Mental health in autistic adults: A rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective.

BACKGROUND: Autistic adults have high risk of mental ill-health and some available interventions have been associated with increased psychiatric diagnoses. Understanding prevalence of psychiatric diagnoses is important to inform the development of individualised treatment and support for autistic adults which have been identified as a research priority by the autistic community. Interventions require to be evaluated both in terms of effectiveness and regarding their acceptability to the autistic community. OBJECTIVE: This rapid review identified the prevalence of psychiatric disorders in autistic adults, then systematic reviews of interventions aimed at supporting autistic adults were examined. A rapid review of prevalence studies was completed concurrently with an umbrella review of interventions. Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines were followed, including protocol registration (PROSPERO#CRD42021283570). DATA SOURCES: MEDLINE, CINAHL, PsycINFO, and Cochrane Database of Systematic Reviews. STUDY ELIGIBILITY CRITERIA: English language; published 2011-2022; primary studies describing prevalence of psychiatric conditions in autistic adults; or systematic reviews evaluating interventions for autistic adults. APPRAISAL AND SYNTHESIS: Bias was assessed using the Prevalence Critical Appraisal Instrument and AMSTAR2. Prevalence was grouped according to psychiatric diagnosis. Interventions were grouped into pharmacological, employment, psychological or mixed therapies. Strength of evidence for interventions was assessed using GRADE (Grading of Recommendations, Assessment, Development and Evaluation). Autistic researchers within the team supported interpretation. RESULTS: Twenty prevalence studies were identified. Many included small sample sizes or failed to compare their sample group with the general population reducing validity. Prevalence of psychiatric diagnoses was variable with prevalence of any psychiatric diagnosis ranging from 15.4% to 79%. Heterogeneity was associated with age, diagnosis method, sampling methods, and country. Thirty-two systematic reviews of interventions were identified. Four reviews were high quality, four were moderate, five were low and nineteen critically low, indicating bias. Following synthesis, no intervention was rated as 'evidence based.' Acceptability of interventions to autistic adults and priorities of autistic adults were often not considered. CONCLUSIONS: There is some understanding of the scope of mental ill-health in autism, but interventions are not tailored to the needs of autistic adults, not evidence based, and may focus on promoting neurotypical behaviours rather than the priorities of autistic people.

Support after COVID-19 study: a mixed-methods cross-sectional study to develop recommendations for practice.

Objectives of study stage 1 were to: explore people's experiences of illness due to COVID-19 while feeling socially isolated or socially isolating; identify perceptions of what would support recovery; and synthesise insights into recommendations for supporting people after COVID-19. Study stage 2 objectives were to engage stakeholders in evaluating these recommendations and analyse likely influences on access to the support identified. DESIGN: A two-stage, multimethod cross-sectional study was conducted from a postpositivist perspective. Stage 1 included an international online survey of people's experiences of illness, particularly COVID-19, in isolation (n=675 full responses). Stage 2 involved a further online survey (n=43), two tweetchats treated as large online focus groups (n=60 and n=27 people tweeting), two smaller focus groups (both n=4) and one interview (both using MS teams). SETTING: Stage 1 had an international emphasis, although 87% of respondents were living in the UK. Stage 2 focused on the UK. PARTICIPANTS: Anyone aged 18+ and able to complete a survey in English could participate. Stage 2 included health professionals, advocates and people with lived experience. MAIN OUTCOME MEASURES: Descriptive data and response categories derived from open responses to the survey and the qualitative data. RESULTS: Of those responding fully to stage 1 (mean age 44 years); 130 (19%) had experienced COVID-19 in isolation; 45 had recovered, taking a mean of 5.3 (range 1-54) weeks. 85 did not feel they had recovered; fatigue and varied 'other' symptoms were most prevalent and also had most substantial negative impacts. Our draft recommendations were highly supported by respondents to stage 2 and refined to produce final recommendations. CONCLUSIONS: Recommendations support access to progressive intensity and specialism of support, addressing access barriers that might inadvertently increase health inequalities. Multidisciplinary collaboration and learning are crucial, including the person with COVID-19 and/or Long Covid in the planning and decision making throughout.

An interdisciplinary nationwide complex intervention for lifespan neurodevelopmental service development: Underpinning principles and realist programme theory.

Background: People seeking support for neurodevelopmental differences often report waiting too long for assessment and diagnosis, as well as receiving inadequate support in educational and health settings. The National Autism Implementation Team (NAIT) developed a new national improvement programme in Scotland, focusing on assessment, diagnosis, educational inclusion, and professional learning. The NAIT programme was conducted within health and education services across the lifespan for a range of neurodevelopmental differences, including autism, developmental coordination disorder, developmental language disorder, and attention deficit hyperactivity disorder. NAIT included a multidisciplinary team, with the involvement of an expert stakeholder group, clinicians, teachers, and people with lived experience. This study explores how the NAIT programme was planned, delivered, and received over three years. Design: We performed a retrospective evaluation. We collected data from review of programme documents, consultation with programme leads and consultation with professional stakeholders. A theory-based analysis was completed, drawing on the Medical Research Council Framework for developing and evaluating complex interventions, and realist analysis methods. We developed a programme theory of the contexts (C), mechanisms (M), and outcomes (O) influencing the NAIT programme, based on comparison and synthesis of evidence. A key focus was on identifying the factors that contributed to the successful implementation of NAIT activities across different domains, including practitioner, institutional and macro levels. Results: On synthesis of the data, we identified the key principles underlying the NAIT programme, the activities and resources utilised by the NAIT team, 16 aspects of context, 13 mechanisms, and 17 outcome areas. Mechanisms and outcomes were grouped at practitioner level, service level and macro level. The programme theory is pertinent to observed practice changes across all stages of referral, diagnosis and support processes within health and education services for neurodivergent children and adults. Conclusions: This theory-informed evaluation has resulted in a clearer and more replicable programme theory that can be used by others with similar aims. This paper illustrates the value of NAIT, as well as realist and complex interventions methodologies as tools for policymakers, practitioners, and researchers.

Differences in assistive technology installed for people with dementia living at home who have wandering and safety risks.

BACKGROUND: Assistive Technology for people with dementia living at home is not meeting their care needs. Reasons for this may be due to limited understanding of variation in multiple characteristics of people with dementia including their safety and wandering risks, and how these affect their assistive technology requirements. This study therefore aimed to explore the possibility of grouping people with dementia according to data describing multiple person characteristics. Then to investigate the relationships between these groupings and installed Assistive Technology interventions. METHODS: Partitioning Around Medoids cluster analysis was used to determine participant groupings based upon secondary data which described the person characteristics of 451 people with dementia with Assistive Technology needs. Relationships between installed Assistive Technology and participant groupings were then examined. RESULTS: Two robust clustering solutions were identified within the person characteristics data. Relationships between the clustering solutions and installed Assistive Technology data indicate the utility of this method for exploring the impact of multiple characteristics on Assistive technology installations. Living situation and caregiver support influence installation of assistive technology more strongly than level of risk or cognitive impairment. People with dementia living alone received different AT from those living with others. CONCLUSIONS: Results suggest that caregiver support and the living situation of the person with dementia influence the type and frequency of installed Assistive Technology. Reasons for this include the needs of the caregiver themselves, the caregiver view of the participants' needs, caregiver response to alerts, and the caregiver contribution to the assistive technology assessment and selection process. Selection processes should be refined to account for the needs and views of both caregivers and people with dementia. This will require additional assessor training, and the development of validated assessments for people with dementia who have additional impairments. Policies should support the development of services which provide a wider range of AT to facilitate interventions which are focused on the needs of the person with dementia.

Person-Centered Healthcare Practice in a Pandemic Context: An Exploration of People's Experience of Seeking Healthcare Support.

Background: The recent COVID-19 pandemic increased pressure upon healthcare resources resulting in compromised health services. Enforced national lockdown led to people being unable to access essential services in addition to limiting contact with social support networks. The novel coronavirus, and subsequent condition known as long covid were not well-understood and clinicians were not supported by existing guidelines or pathways. Our study explored people's experiences of healthcare during this period with a person-centered "lens." Methods: Ninety-seven people participated in our online survey about their experiences of the pandemic, particularly while socially isolated and their experiences of healthcare. Following completion of the survey, 11 of these participants agreed to further semi-structured interviews to explore this further in their own words. Interview conversations were transcribed, checked; together with the responses to open questions in the survey. The data were then analyzed thematically by members of the research team. We conducted framework analysis from a post-positivist perspective, using the Person-centered Practice Framework to explore participants' experiences. Results: There were few examples of people describing person-centered care. People experienced barriers to accessing support, and negative experiences of care that represented complexities enacting person-centered care at each level of the framework (processes, practice environment, prerequisites, and macro context). These barriers were influenced greatly by the pandemic, for example, with health professionals being harder to access. Some experiences related to the ways in which health professionals responded to the context, for example, positive examples included active listening, recognition of people's experiences, seeking to find out more, and engaging in collaborative problem-solving. Discussion: People want to feel heard, supported to navigate healthcare systems, source trustworthy information, find appropriate services, and collaborate in learning and problem-solving with healthcare professionals. There have been enormous challenges to the provision of healthcare throughout the pandemic. Moving forward is crucial with emphasis on overcoming barriers to person-centered healthcare. This should focus on steps now and also in planning for the possibility of further rapid changes in the demand for and provision of healthcare.

Exploring the needs of people with dementia living at home reported by people with dementia and informal caregivers: a systematic review and Meta-analysis.

OBJECTIVES: To provide prevalence estimates of needs of people with dementia living at home, and to determine sources of variation associated with needs for this population. METHOD: A systematic review and meta-analysis was performed searching CINAHL, MEDLINE, PsycINFO and ASSIA databases. Following quality checks, random effects meta-analysis produced prevalence estimates for needs reported by people with dementia and by their informal caregivers. Fixed effects models were undertaken to compare caregiver and person with dementia reported needs. Heterogeneity was explored through sensitivity analysis. The study protocol was registered with Prospero #CRD42017074119. RESULTS: Six retrieved studies published between 2005 and 2017 including 1011 people with dementia and 1188 caregivers were included in the analysis. All data were collected using Camberwell Assessment of Need for the Elderly. Prevalence estimates are provided for 24 needs reported by participants in The Netherlands, United Kingdom, Poland, Ireland, Germany, Norway, Portugal, Italy and Sweden. Most prevalent needs reported by people with dementia were Memory 0.713 [95% CI 0.627, 0.791]; Food 0.706 [95% CI 0.547, 0.842]; Household activities 0.677 [95% CI 0.613, 0.738]; and Money 0.566 [95% CI 0.416, 0.711]. Caregivers reported greater prevalence than people with dementia did for 22 of 24 needs, although the priority ranking of needs was similar. Exploration of heterogeneity revealed that people with young onset dementia were the major source of variation for 24 out of 48 analyses. CONCLUSION: Increased understanding of prevalence of needs of people with dementia and associated heterogeneity can assist in planning services to meet those needs.

The TREATT Trial (TRial to EvaluAte Tranexamic acid therapy in Thrombocytopenia): safety and efficacy of tranexamic acid in patients with haematological malignancies with severe thrombocytopenia: study protocol for a double-blind randomised controlled trial.

BACKGROUND: Patients with haematological malignancies often develop thrombocytopenia as a consequence of either their disease or its treatment. Platelet transfusions are commonly given to raise a low platelet count and reduce the risk of clinical bleeding (prophylaxis) or stop active bleeding (therapy). Recent studies have shown that many patients continue to experience bleeding despite the use of prophylactic platelet transfusions. Tranexamic acid is an anti-fibrinolytic, which reduces the breakdown of clots formed in response to bleeding. Anti-fibrinolytics have been shown to prevent bleeding, decrease blood loss and use of red cell transfusions in elective and emergency surgery, and are used widely in these settings. The aim of this trial is to test whether giving tranexamic acid to patients receiving treatment for haematological malignancies reduces the risk of bleeding or death and the need for platelet transfusions. METHODS: This is a multinational randomised, double-blind, placebo-controlled, parallel, superiority trial. Patients will be randomly assigned to receive tranexamic acid (given intravenously or orally) or a matching placebo in a 1:1 ratio, stratified by site. Patients with haematological malignancies receiving intensive chemotherapy or stem cell transplantation (or both) who are at least 18 years of age and expected to become severely thrombocytopenic for at least 5 days will be eligible for this trial. The primary outcome of the trial is the proportion of patients who died or had bleeding of World Health Organization grade 2 or above during the first 30 days of the trial. We will measure the rates of bleeding daily by using a short, structured assessment of bleeding, and we will record the number of transfusions given to patients. We will assess the risk of arterial and venous thrombosis for 120 days from the start of trial treatment. DISCUSSION: This trial will assess the safety and efficacy of using prophylactic tranexamic acid during a period of intensive chemotherapy and associated thrombocytopenia in people with haematological disorders. TRIAL REGISTRATION: This study was prospectively registered on Current Controlled Trials on 25 March 2015 (ISRCTN73545489) and is also registered on ClinicalTrials.gov (NCT03136445).

Assessment of need and practice for assistive technology and telecare for people with dementia-The ATTILA (Assistive Technology and Telecare to maintain Independent Living At home for people with dementia) trial.

INTRODUCTION: The objective of this study was to define current assistive technology and telecare (ATT) practice for people with dementia living at home. METHODS: This is a randomized controlled trial (N = 495) of ATT assessment and ATT installation intervention, compared with control (restricted ATT package). ATT assessment and installation data were collected. Qualitative work identified value networks delivering ATT, established an ATT assessment standard. RESULTS: ATT was delivered by public and not-for-profit telecare networks. ATT assessments showed 52% fidelity to the ATT assessment standard. Areas of assessment most frequently leading to identifying ATT need were daily activities (93%), memory (89%), and problem-solving (83%). ATT needs and recommendations were weakly correlated (τ = 0.242; P < .000), with ATT recommendations and installations moderately correlated (τ = -0.470; P < .000). Half (53%) of recommended technology was not installed. Safety concerns motivated 38% of installations. DISCUSSION: Assessment recommendations were routinely disregarded at the point of installation. ATT was commonly recommended for safety and seldom for supporting leisure.