Background: the diversity of patient experiences of orphan drug development has until recently been overlooked, with the existing literature reporting the experience of some patients and not others. The current evidence base (the best available current research) is dominated by quantitative surveys and patient reported outcome measuresdefined by researchers. Where research that uses qualitative methods of data collection and analysis has been conducted, patient experiences have been studied using content analysis and automatic textual analysis, rather than in-depth qualitative analytical methods. Systematic reviews of patient engagement in orphan drug development have also excluded qualitative studies. The aim of this paper is to review qualitative literature about how patients and other members of the public engage with orphan drug development.
Methods: We conducted a systematic search of qualitative papers describing a range of patient engagement practices and experiences were identified and screened. Included papers were appraised using a validated tool (CASP), supplemented by reporting guidance (COREQ), by two independent researchers.
Results: 262 papers were identified. Thirteen papers reported a range of methods of qualitative data collection. Many conflated patient and public involvement and engagement (PPIE) with qualitative research. Patients were typically recruited via their physician or patient organisations. We identified an absence of overarching philosophical or methodological frameworks, limited details of informed consent processes, and an absence of recognisable methods of data analysis. Our narrative synthesis suggests that patients and caregivers need to be involved in all aspects of trial design, including the selection of clinical endpoints that capture a wider range of outcomes, the identification of means to widen access to trial participation, the development of patient facing materials to optimise their decision making, and patients included in the dissemination of trial results.
Conclusions: This narrative qualitative synthesis identified the explicit need for methodological rigour in research with patients with rare diseases (e.g. appropriate and innovative use of qualitative methods or PPIE, rather than their conflation); strenuous efforts to capture the perspectives of under-served, under-researched or seldom listened to communities with experience of rare diseases (e.g. creative recruitment and wider adoption of post-colonial practices); and a re-alignment of the research agenda (e.g. the use of co-design to enable patients to set the agenda, rather than respond to what they are being offered).

PURPOSE: Hip fracture is common in older people - with prevalence even higher for people with dementia. Research often excludes people with dementia - especially those in the more advanced stages. Therefore, the most appropriate interventions remain unknown. The main aim of this study was to gain consensus about the core considerations needed to deliver a physical intervention for people with advanced dementia who fracture their hip. Materials and Methods: an expert consensus process was undertaken, using Nominal Group Technique, to explore the key considerations when delivering rehabilitation. Data collection was undertaken in January 2023 and involved an online group discussion followed by voting and off-line rating. Qualitative content analysis and quantitative analysis of consensus scoring was undertaken. An international group of seven highly specialised physiotherapists took part. RESULTS: 59 statements were agreed following the process. Content analysis was used to categorise these statements according to the International Classification of Functioning, Disability and Health. Although consensus levels were high, there was disagreement in several areas. CONCLUSION: the statements provide an overarching understanding of the multidisciplinary expertise that is needed to effectively deliver rehabilitation interventions to this population. People with dementia require highly skilled and trained professionals, providing holistic and person-centred approaches to deliver rehabilitation interventions.IMPLICATIONS FOR REHABILITATIONThe expert consensus provides an overarching understanding of the multidisciplinary expertise that is needed to effectively deliver rehabilitation interventions to this population.Physiotherapy - or other interventions - cannot be used in isolation.People with dementia require highly skilled and trained professionals, providing holistic and person-centred approaches to deliver rehabilitation interventions.While our focus was on hip fracture, we suggest these statements can be used for people with advanced dementia with a variety of other conditions.

ObjectivesThe aim of this study was to explore healthcare professionals’ principles for providing and delivering rehabilitation interventions for people with advanced dementia.DesignThis was a qualitative study with three focus groups undertaken virtually. The data were analysed using a process of reflexive thematic analysis in order to gain an in-depth understanding of rehabilitation principles for this population.Setting and participants20 healthcare professionals who were specialists in treating and rehabilitating people with advanced dementia were recruited. These healthcare professionals had a wide range of experience in a variety of different settings including primary care, secondary care as well as specialist mental health teams. Purposive sampling focused on the requirement for participants to have significant experience of treating people with dementia. Participants were from the UK and Denmark. Data collection was undertaken during August and September 2022.ResultsThree overarching themes were developed following analysis—organisational culture, knowledge and personal values of the healthcare professional. The first explored how the culture of an organisation affects a person with advanced dementia as well as the healthcare professional. The organisation needed to promote positive approaches to person-centred care and provide effective situational leadership to embed such approaches. Knowledge was a key consideration and was closely linked to the personal values of the healthcare professional, which formed the final theme. This study suggests that the interrelationship of these three factors influences the outcomes for the person with dementia and effective outcomes required consideration of all domains.ConclusionsEffective interventions for people with advanced dementia require the healthcare professional to have the knowledge about dementia and positive personal values, but the culture of the organisation is also key to ensure that the healthcare professional is able to deliver successful interventions.

Objective: to present the extent of evidence concerning the effectiveness of extended reality telerehabilitation and patients’ experiences of using different types of virtual reality exercises at home. Methods: We included studies on virtual reality and augmented reality telerehabilitation published in English. Systematic searches were undertaken in PubMed, Web of Sciences, Medline, Embase, CINAHL, and PEDro, with no date limitations. We included only RCTs and qualitative studies exploring patients’ experiences. Methodological quality was assessed using the Cochrane Risk of Bias assessment tool for quantitative papers and the CASP scale for qualitative studies. All results are presented narratively. Results: Thirteen studies, nine quantitative and four qualitative, were included, with one qualitative and seven quantitative having a high risk of bias. All studies reported that extended reality-based telerehabilitation may be effective compared to conventional exercises or other extended reality exercises. Seven quantitative studies focused on upper limb function. Qualitative papers suggested that VR exercises were perceived as feasible by patients. Conclusions: the literature suggests VR home exercises are feasible and potentially effective for patients after a stroke in the upper limb. Further high-quality studies are needed to examine the effectiveness of XR exercises early adoption on different qualitative and quantitative outcomes. Registration number: (CRD42022384356).

Abstract
. Background
. The majority of older people (> 65 years) in hospital have frailty and are at increased risk of readmission or death following discharge home. In the UK, following acute hospitalisation, around one third of older people with frailty are referred on for rehabilitation, termed ‘intermediate care’ services. Although this rehabilitation can reduce early readmission to hospital (< 30 days), recipients often do not feel ready to leave the service on discharge, suggesting possible incomplete recovery. Limited evidence suggests extended rehabilitation is of benefit in several conditions and there is preliminary evidence that progressive physical exercise can improve mobility and function for older people with frailty, and slow progression to disability. Our aim is to evaluate the effectiveness of the Home-based Older People’s Exercise (HOPE) programme as extended rehabilitation for older people with frailty discharged home from hospital or intermediate care services after acute illness or injury.
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. Methods
. A multi-centre individually randomised controlled trial, to evaluate the clinical and cost-effectiveness of the HOPE programme. This individualised, graded and progressive 24-week exercise programme is delivered by NHS physiotherapy teams to people aged 65 and older with frailty, identified using the Clinical Frailty Scale, following discharge from acute hospitalisation and linked intermediate care rehabilitation pathways. The primary outcome is physical health-related quality of life, measured using the physical component summary score of the modified Short Form 36- item health questionnaire (SF36) at 12 months. Secondary outcomes include self-reported physical and mental health, functional independence, death, hospitalisations, care home admissions. Plans include health economic analyses and an embedded process evaluation.
.
. Discussion
. This trial seeks to determine if extended rehabilitation, via the HOPE programme, can improve physical health-related quality of life for older people with frailty following acute hospitalisation. Results will improve awareness of the rehabilitation needs of older people with frailty, and provide evidence on the clinical and cost-effectiveness of the targeted exercise intervention. There is potential for considerable benefit for health and social care services through widespread implementation of trial findings if clinical and cost-effectiveness is demonstrated.
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. Trial registration
. ISRCTN 13927531. Registered on April 19, 2017.
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In July 2019, Belo Horizonte hosted an international workshop for 27 junior researchers, whose participants were from Brazil and the United Kingdom. This three-day meeting organized by the Universidade Federal de Minas Gerais and the University of East Anglia addressed challenges in cognitive impairment and dementia, with particular interest in public perceptions, diagnosis and care management. The purpose of this report is to highlight the outcomes of the above-mentioned workshop regarding the topic of public perceptions (part I). Discussions focused on differences and similarities between countries, as well as on identifying main issues that required collaborative and creative solutions. After these group discussions, four core themes emerged: I) cognitive impairment; II) dementia - beyond Alzheimer's disease; III) prevention; and IV) stigma. National and international initiatives to deal with public misperceptions about cognitive impairment and dementia were discussed.

BACKGROUND: Many interventions aim to alleviate well-documented problems of malnutrition in residential care homes and improve residents' health and wellbeing. Despite some positive findings, little is known about how and why mealtime interventions might be effective, and in particular, what effects residents' experiences of mealtimes have on health outcomes. The aim of this study was to gain an insight into these experiences and explore some of the issues that may impact on residents' enjoyment of meals, and resulting health and wellbeing. METHODS: Semi-structured interviews were conducted with eleven residents from four care homes in the South West UK. Thematic analysis was used to derive content and meaning from transcribed interviews. Interviews were supplemented by researcher observations of mealtimes. RESULTS: the dining experience was a focal point for participants' broader experiences of residing in a care home. Three themes pertaining to residents' experiences were identified: (1) Emotional and psychological connections with other residents; (2) managing competing interests with limited resources; and (3) familiarity and routine. CONCLUSION: Mealtimes are a mainstay of life in a care home through which residents' experiences are characterised, exemplified and magnified. Understanding how residents interact with one another, accommodating their preferences and encouraging autonomy may enhance their mealtime experiences. It may also help to ease the transition from independent-living to life in care, which can be particularly stressful for some residents, and improve health and wellbeing over the long-term.

BACKGROUND: it is estimated that people with dementia are approximately three times more likely to fracture their hip than sex and age matched controls. A report by the Chartered Society of Physiotherapy found that this population have poor access to rehabilitation as inpatients and in the community. A recent scoping review found a paucity of research in this area, indeed there has been no qualitative research undertaken with physiotherapists. In order to address this evidence gap, the aim of this current study was to explore the experiences of physiotherapists treating this population. METHODS: Semi-structured interviews with physiotherapists were undertaken in order to gain an in-depth understanding of how they manage this population. Physiotherapists were recruited from all over the UK and a purposive sampling strategy was employed. Thematic analysis was utilised. RESULTS: a total of 12 physiotherapists were interviewed, at which stage data saturation was reached as no new themes were emerging. The participants had a broad range of experience both in physical and mental health settings. Analysis identified three separate themes: challenges, "thinking outside the box" and realising potential. Physiotherapists felt significant pressures and challenges regarding many aspects of the management of this population. Mainly this was the result of pressures placed on them by guidelines and targets that may not be achievable or appropriate for those with dementia. The challenges and importance of risk taking was also highlighted for this population with an appreciation that standard treatment techniques may need adapting. "Rehabilitation potential" was highlighted as an important consideration, but challenging to determine. CONCLUSION: Interventions for the management of people with dementia and hip fracture need to consider that a traditional biomedical physiotherapy approach may not be the most appropriate approach to use with this population. However physiotherapists reported feeling pressurised to conform to a biomedical approach.

Objective: to establish the current evidence base for the use of orthotics and taping for people with osteoporotic vertebral fracture (OVF)
Design: Systematic review of quantitative and qualitative studies
Data sources: Medline, Medline-In Process, EMBASE, AMED, CINAHL, PEDro, TRIP, EThOS, ProQuest Dissertations and Theses and Cochrane (CDSR, DARE, CMR, HTA, EED) plus Cochrane Central, UK Clinical Research Network portfolio, Controlled Clinical Trials register and the Australian and New Zealand Clinical Trials register.
Eligibility criteria for selecting studies: all study designs were considered if they reported in English and evaluated the impact of using an external support, such as a spinal brace, orthosis or postural tape, with adults with osteoporotic vertebral fracture. All outcomes were considered.
Results: Nine studies were included comprising two parallel-group randomised controlled trials, four randomised crossover trials, two before-after (single arm) studies and a parallel group observational study. No qualitative studies were identified. A wide range of outcomes assessing impairments, activities and participation were assessed but the findings were mixed. The quality of studies was limited.
Conclusion: the current evidence for using orthotic devices or taping for people with OVF is inconsistent and of limited quality and therefore careful consideration should be taken by clinicians before prescribing them in practice.
Registration: PROSPERO (CRD 42015020893)