Young people's and adults' views and experiences of decision-making to manage compromised first permanent molars: a qualitative study.

BACKGROUND: Little information on young people's and adults' views and experiences on decision-making for managing compromised first permanent molars (cFPM) exists. AIM: To establish young people's and adults' views and experiences of decision-making for managing cFPM. DESIGN: Face-to-face (online) semi-structured interviews were undertaken using an iteratively designed topic guide. Participants aged 12-65 were purposively sampled with recruitment from different dental clinics (three primary care, an out-of-hours emergency and one dental hospital). Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Three themes were generated from young people's interviews (n = 9): (i) influencing factors; (ii) long-term considerations; and (iii) shared decision-making. Three themes were generated from adults' interviews (n = 13): (i) influences that affect decisions; (ii) perceptions of the specialist's role; and (iii) importance of shared decision-making for children and young people. CONCLUSION: Several factors influenced decision-making; for young people, professional opinions were important, and parental/peer influences less so. For adults, it was based on decisions on their prior experiences. Adults felt young people were abnormal if referred to a specialist. Young people wanted autonomy in decision-making to be respected; in reality, their views were rarely heard. There is potential to increase young people's involvement in shared decision-making for cFPM, which aligns with their aspirations.

Exploring dental treatment decision-making experiences of people living with dementia and family carers.

INTRODUCTION: People living with dementia can have complex dental care needs. Dentists and patients should make treatment decisions together, yet some people living with dementia may be unable to make their own decisions about their dental care. Dental treatment decision-making and patients' experiences of this process have not been comprehensively researched. OBJECTIVE: This study aimed to explore the dental treatment decision-making perspectives and experiences of people living with dementia and their family members. METHODS: Semi-structured interviews were undertaken with 8 people living with dementia and 17 family caregivers. A constructivist grounded theory approach was adopted, using a maximum variation sample. Qualitative data collection and analysis occurred concurrently. Data underwent initial open coding followed by more focused coding, supported by reflexive memo writing, which supported data categorisation. RESULTS: People living with dementia reported wanting to be understood as unique individuals with specific needs. All participants described wanting to be actively involved in dental treatment decisions. However, many felt that they were insufficiently involved in treatment decision-making. This perceived underinvolvement meant that some people living with dementia and family members felt the treatment outcomes they sought were neither discussed nor considered. CONCLUSION: People living with dementia and carers had specific expectations of dental care yet felt passive in decision-making despite their desire to be involved in this process. Dentists should seek to actively establish patients' preferences, regardless of mental capacity and consider these in discussions and decisions about dental treatment.

A multicentre prospective evaluation of health-related quality of life and patient related outcomes in pancreatic and peripancreatic cancer: PROMCAN study.

BACKGROUND: The temporal evolution of HRQoL and the importance of other PROs to patients, following resection for pancreatic and peripancreatic malignancy remains unexplored. METHODS: Patients undergoing pancreatic resection between 2021 and 2022 were enrolled from 2 UK HPB centres. Patients completed the EORTC QLQ-C30, QLQ-PAN26 tools and rated 56 PROs preoperatively (T1), at discharge (T2), 6-weeks (T3), 3-months (T4) and 6-months (T5) postoperatively. ANOVA followed by post-hoc analysis was used to examine patterns in HRQoL through time. Multivariable ANOVA was used to identify impact of clinical factors on HRQoL. RESULTS: 63 patients were recruited [median age, 72 (IQR 41-85); 39/63 male]. Physical functioning declined from 70.4 (26.2) at T1 to 53.5 (20.9) at T2 (p = 0.016). Global QoL score increased significantly from 41.0 (23.0) at T2 to 60.0 (26.1) at T5 (p = 0.007), as did role functioning [21.1 (27.9) at T2 to 59.4 (32.8) at T5, p < 0.001]. Chemotherapy status and the postoperative complications did not significantly change HRQoL. General QoL and health were the only PROs rated as 'very important' (scores 7-9) by more than 80 % of participants at five time-points. CONCLUSION: Recuperation of HRQoL measures is seen at 6-months postoperative and was not affected by chemotherapy or postoperative complications. Notably, PROs important to patients varied over time.

Patient Priorities in Autoimmune Hepatitis: The Need for Better Treatments, More Education and Challenging Stigma.

BACKGROUND: Data show that patients with autoimmune hepatitis have significantly reduced quality-of-life and that corticosteroids carry marked side effects. AIMS: This study explored patients' experiences of autoimmune hepatitis and its treatments; key aspects for developing safe and effective new approaches to therapy. METHODS: An anonymised, internet-based survey collected data including patient demographics, treatments, side-effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis between December 2019-January 2020. Semi-structured interviews were conducted with 13 patients to further explore their support networks, treatment experiences and health priorities. Descriptive and quantitative analyses were undertaken using R and free text responses were subject to thematic analysis. RESULTS: In total, 270 survey responses were received (median age 55 years and 94% female). Perceived medication side-effects were reported by 66% (169/257) and 73% responded negatively about their experience of corticosteroids. The majority (62·3% [(109/175]) would 'definitely' or 'probably' consider clinical trial participation to improve their care. Only 18·7% (31/166) reported access to a specialist liver nurse and nearly half were involved in support groups. Interview and survey data suggested that major issues were stigma, loss of control and fatigue. CONCLUSIONS: This study provides insights into the realities of living with autoimmune hepatitis with clear issues around lack of support networks, need for patient empowerment and stigma surrounding liver disease. Patient priorities are better therapies to slow disease progression, avoiding corticosteroids and minimising side-effects. Patient willingness to participate in trials suggests that they are achievable provided they have the right design and clinical endpoints.

When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers.

BACKGROUND: Little is currently known about the perspectives of people with interstitial lung disease and their carers in relation to the timing of palliative care conversations. AIM: To establish patients' and carers' views on palliative care in interstitial lung disease and identify an optimum time to introduce the concept of palliative care. DESIGN: Meta-ethnography of qualitative evidence. The review protocol was prospectively registered with PROSPERO (CRD42021243179). DATA SOURCES: Five electronic healthcare databases were searched (Medline, Embase, CINAHL, Scopus and Web of Science) from 1st January 1996 to 31st March 2022. Studies were included that used qualitative methodology and included patients' or carers' perspectives on living with end-stage disease or palliative care. Quality was assessed using the Critical Appraisal Skills Programme checklist. RESULTS: About 1779 articles were identified by initial searches. Twelve met the inclusion criteria, providing evidence from 266 individuals across five countries. Three stages were identified in the illness journey of a person with interstitial lung disease: (1) Information seeking, (2) Grief and adjustment, (3) Fear of the future. Palliative care involvement was believed to be most appropriate in the latter two stages and should be prompted by changes in patients' health such as respiratory infections, onset of new symptoms, hospital admission, decline in physical function and initiation of oxygen. CONCLUSIONS: Patients and carers prefer referral to palliative care services to be prompted by changes in health status. Future research should focus on supporting timely recognition of changes in patients' health status and how to respond in a community setting.

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis.

BACKGROUND: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care. AIM: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care. DESIGN: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197). DATA SOURCES: Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design. RESULTS: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life. CONCLUSIONS: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.

BACKGROUND: Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process. REVIEW QUESTION: What interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD? METHODS: A narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements. RESULTS: Eight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning. CONCLUSION: Decision-making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision-making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision-specific interventions are unlikely to produce benefit in other decision contexts. PATIENT INVOLVEMENT: Two caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper.

Assessing the Predictive Validity of Simple Dementia Risk Models in Harmonized Stroke Cohorts.

BACKGROUND AND PURPOSE: Stroke is associated with an increased risk of dementia. To assist in the early identification of individuals at high risk of future dementia, numerous prediction models have been developed for use in the general population. However, it is not known whether such models also provide accurate predictions among stroke patients. Therefore, the aim of this study was to determine whether existing dementia risk prediction models that were developed for use in the general population can also be applied to individuals with a history of stroke to predict poststroke dementia with equivalent predictive validity. METHODS: Data were harmonized from 4 stroke studies (follow-up range, ≈12-18 months poststroke) from Hong Kong, the United States, the Netherlands, and France. Regression analysis was used to test 3 risk prediction models: the Cardiovascular Risk Factors, Aging and Dementia score, the Australian National University Alzheimer Disease Risk Index, and the Brief Dementia Screening Indicator. Model performance or discrimination accuracy was assessed using the C statistic or area under the curve. Calibration was tested using the Grønnesby and Borgan and the goodness-of-fit tests. RESULTS: The predictive accuracy of the models varied but was generally low compared with the original development cohorts, with the Australian National University Alzheimer Disease Risk Index (C-statistic, 0.66) and the Brief Dementia Screening Indicator (C-statistic, 0.61) both performing better than the Cardiovascular Risk Factors, Aging and Dementia score (area under the curve, 0.53). CONCLUSIONS: Dementia risk prediction models developed for the general population do not perform well in individuals with stroke. Their poor performance could have been due to the need for additional or different predictors related to stroke and vascular risk factors or methodological differences across studies (eg, length of follow-up, age distribution). Future work is needed to develop simple and cost-effective risk prediction models specific to poststroke dementia.

Impact of a health marketing campaign on sugars intake by children aged 5-11 years and parental views on reducing children's consumption.

BACKGROUND: The association between Free Sugars intake and non-communicable diseases such as obesity and dental caries is well documented and several countries are taking measures to reduce sugars intakes. Public Health England (PHE) instigated a range of approaches to reduce sugars, including a national health marketing campaign (Sugar Smart). The campaign aimed to raise awareness of the amount of sugars in foods and drinks and to encourage parents to reduce their children's intake. The aim of this study was to determine whether the campaign was effective in altering dietary behaviour, by assessing any impact of the campaign on sugars intake among children aged 5-11 years. Parental perceptions of the campaign and barriers to reducing sugars intake were also explored. METHODS: Parents of 873 children aged 5-11 years, identified from an existing PHE database, were invited to take part. Dietary information was collected online using Intake24 before, during, and at 1, 10 and 12 months following the campaign. Change in sugars intake was assessed using mixed effects linear regression models. One-to-one telephone interviews were conducted with a purposive sample of parents to explore perceptions of the campaign and identify barriers and facilitators to reducing children's sugars intake. RESULTS: Completion rates for dietary assessment ranged from 61 to 72% across the follow up time points. Qualitative telephone interviews were conducted with 20 parents. Total sugars intake decreased on average by ~ 6.2 g/day (SD 43.8) at peak campaign and the percentage of energy from total sugars significantly decreased immediately and 1 year post campaign. The percentage of energy from Free Sugars significantly decreased across all time points with the exception of the long term follow up at 12-months post campaign. The percentage of energy intake from total fat increased. Parents expressed a willingness to reduce sugars intakes, however, identified barriers including time constraints, the normalisation of sugary treats, and confusing information. CONCLUSIONS: A health marketing campaign had a positive impact in reducing sugars intake but reductions in sugars were not sustained. Parents want to reduce their child's sugars intake but societal barriers and confusion over which sources of sugars to avoid hamper efforts to change.

Care priorities for stroke patients developing cognitive difficulties: a Delphi survey of UK professional views.

BACKGROUND: Post stroke cognitive difficulties are common but generally prioritised below other impairments. In the UK, clinical guidelines recommend a holistic review at six-months post-stroke including an assessment of cognitive function. In order to assist clinicians to provide better care for patients with post-stroke cognitive deficits and assist with service planning, our aim was to establish professional consensus on key actions at the six-month review. METHODS: An electronic Delphi survey was developed with ten potential actions for clinicians to prioritise across five different clinical scenarios describing patients with cognitive difficulties. Scenarios varied in terms of age of the stroke-survivor, stroke severity and use of dementia risk assessment. A panel of professional volunteers was obtained through the British Association of Stroke Physicians and the UK National Stroke Nursing Forum. RESULTS: Forty-five stroke clinicians completed round one, with 21 participants completing round two. Priorities consistently supported by professionals included access to psychological services, screening for a mood disorder and ensuring multi-professional input. Direct access to specialist memory services was not generally supported unless a dementia risk assessment tool indicated that the individual was at high risk of dementia. CONCLUSIONS: Assessment of post-stroke cognitive deficits needs to be routinely considered during the six-month review. A formal risk assessment tool could be a way to streamline direct access to memory clinic services to ensure that individuals at-risk of dementia receive ongoing care.

Paramedic experiences of using an enhanced stroke assessment during a cluster randomised trial: a qualitative thematic analysis.

BACKGROUND: Intravenous thrombolysis is a key element of emergency treatment for acute ischaemic stroke, but hospital service delivery is variable. The Paramedic Acute Stroke Treatment Assessment (PASTA) multicentre cluster randomised controlled trial evaluated whether an enhanced paramedic-initiated stroke assessment pathway could improve thrombolysis volume. This paper reports the findings of a parallel process evaluation which explored intervention paramedics' experience of delivering the enhanced assessment. METHODS: Interviewees were recruited from 453 trained intervention paramedics across three UK ambulance services hosting the trial: North East, North West and Welsh Ambulance Services. A semistructured interview guide aimed to (1) explore the stroke-specific assessment and handover procedures which were part of the PASTA pathway and (2) enable paramedics to share relevant views about expanding their role and any barriers/enablers they encountered. Interviews were audiorecorded, transcribed verbatim and analysed following the principles of the constant comparative method. RESULTS: Twenty-six interviews were conducted (11 North East, 10 North West and 5 Wales). Iterative data analysis identified four key themes, which reflected paramedics' experiences at different stages of the care pathway: (1) Enhanced assessment at scene: paramedics felt this improved their skillset and confidence. (2) Prealert to hospital: a mixed experience dependent on receiving hospital staff. (3) Handover to hospital team: standardisation of format was viewed as the primary benefit of the PASTA pathway. (4) Assisting in hospital and feedback: due to professional boundaries, paramedics found these aspects harder to achieve, although feedback from the clinical team was valued when available. CONCLUSION: Paramedics believed that the PASTA pathway enhanced their skills and the emergency care of stroke patients, but a continuing clinical role postadmission was challenging. Future studies should consider whether interdisciplinary training is needed to enable more radical extension of professional boundaries for paramedics.

Post-stroke memory deficits and barriers to seeking help: views of patients and carers.

BACKGROUND: Memory and cognitive deficits post stroke are common and associated with increased risk of future dementia. Rehabilitation tends to focus on physical recovery; however, once in the community, it is unclear what happens in the longer term to the stroke-survivor with new memory difficulties. OBJECTIVE: The aim of this qualitative study was to examine in stroke-survivors what factors influence contact with health professionals. METHOD: Semi-structured interviews were conducted with stroke-survivors and their family carers where memory difficulties were reported at 6 months post stroke. A topic guide was used which sought to critically examine participants care experience following their stroke diagnosis. All participants were interviewed at baseline (around 6 months post stroke) and offered an interview at around 12 months post stroke. All interviews were conducted in the North East of England. All transcripts were coded and thematically analysed. RESULTS: Ten stroke-survivors (age range 72-84 years) were interviewed alongside five carers at baseline; eight stroke-survivors and four carers agreed to a follow-up interview. Three main barriers were identified: (i) fear of a dementia diagnosis; (ii) denial or minimization of symptoms leading to adaptation and (iii) obstacles to seeking help in the community. CONCLUSIONS: With an ageing population and increase in stroke-survival, the burden of post-stroke cognitive impairment and dementia will only increase. Stroke-survivors and their family carers in this study have identified issues that may hinder their presentation to health care professionals at a personal and organizational level. Health professionals need to be aware of these potential issues when planning services for stroke-survivors.

Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution.

BACKGROUND: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. METHOD: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. RESULTS: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital - a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. CONCLUSIONS: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.

End-of-life care: A qualitative study comparing the views of people with dementia and family carers.

BACKGROUND: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. AIM: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. DESIGN: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. SETTING/PARTICIPANTS: Participants comprised people with early stage dementia, living at home in the north-east of England ( n = 11); and current and bereaved carers ( n = 25) from six services providing end-of-life care in England. FINDINGS: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. CONCLUSION: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders.

BACKGROUND: People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention. METHODS: The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups. RESULTS: Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death. CONCLUSIONS: This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.

Resource allocation in NHS dentistry: recognition of societal preferences (RAINDROP): study protocol.

BACKGROUND: Resources in any healthcare systems are scarce relative to need and therefore choices need to be made which often involve difficult decisions about the best allocation of these resources. One pragmatic and robust tool to aid resource allocation is Programme Budgeting and Marginal Analysis (PBMA), but there is mixed evidence on its uptake and effectiveness. Furthermore, there is also no evidence on the incorporation of the preferences of a large and representative sample of the general public into such a process. The study therefore aims to undertake, evaluate and refine a PBMA process within the exemplar of NHS dentistry in England whilst also using an established methodology (Willingness to Pay (WTP)) to systematically gather views from a representative sample of the public. METHODS: Stakeholders including service buyers (commissioners), dentists, dental public health representatives and patient representatives will be recruited to participate in a PBMA process involving defining current spend, agreeing criteria to judge services/interventions, defining areas for investment and disinvestment, rating these areas against the criteria and making final recommendations. The process will be refined based on participatory action research principles and evaluated through semi-structured interviews, focus groups and observation of the process by the research team. In parallel a representative sample of English adults will be recruited to complete a series of four surveys including WTP valuations of programmes being considered by the PBMA panel. In addition a methodological experiment comparing two ways of eliciting WTP will be undertaken. DISCUSSION: The project will allow the PBMA process and particularly the use of WTP within it to be investigated and developed. There will be challenges around engagement with the task by the panel undertaking it and with the outputs by stakeholders but careful relationship building will help to mitigate this. The large volume of data will be managed through careful segmenting of the analysis and the use of the well-established Framework approach to qualitative data analysis. WTP has various potential biases but the elicitation will be carefully designed to minimise these and some methodological investigation will take place.

Gaps in care for patients with memory deficits after stroke: views of healthcare providers.

BACKGROUND: Stroke is a common cause of physical disability but is also strongly associated with cognitive impairment and a risk for future dementia. Despite national clinical guidelines, the service provided for stroke survivors with cognitive and memory difficulties varies across localities. This study critically evaluated the views of healthcare professionals about barriers and facilitators to their care. METHODS: Seventeen semi-structured individual interviews were conducted by a single interviewer with both primary and secondary care clinicians in regular contact with stroke-survivors. This included stroke medicine specialists, specialist nurses, physiotherapists, occupational therapists, general practitioners and primary care nurses. Topics included individual experiences of the current care offered to patients with cognitive impairment, assessment processes and inter-professional communication. Interviews were audio recorded and transcribed verbatim. Transcripts were thematically analysed and themes grouped into broad categories to facilitate interpretation. RESULTS: Data analysis identified four key themes as barriers to optimal care for stroke-survivors with memory difficulties: 1) Less focus on memory and cognition in post-stroke care; 2) Difficulties bringing up memory and cognitive problems post-stroke; 3) Lack of clarity in current services; and, 4) Assumptions made by healthcare professionals introducing gaps in care. Facilitators included stronger links between primary and secondary care in addition to information provision at all stages of care. CONCLUSIONS: The care provided by stroke services is dominated by physical impairments. Clinicians are unsure who should take responsibility for follow-up of patients with cognitive problems. This is made even more difficult by the lack of experience in assessment and stigma surrounding potential diagnoses associated with these deficits. Service development should focus on increased cohesiveness between hospital and community care to create a clear care pathway for post-stroke cognitive impairment.

Expert views on the factors enabling good end of life care for people with dementia: a qualitative study.

BACKGROUND: Dementia, of all long term illnesses, accounts for the greatest chronic disease burden, and the number of people with age-related diseases like dementia is predicted to double by 2040. People with advanced dementia experience similar symptoms to those dying with cancer yet professional carers find prognostication difficult and struggle to meet palliative care needs, with physical symptoms undetected and untreated. While elements of good practice in this area have been identified in theory, the factors which enable such good practice to be implemented in real world practice need to be better understood. The aim of this study was to determine expert views on the key factors influencing good practice in end of life care for people with dementia. METHODS: Semi-structured telephone and face-to-face interviews with topic guide, verbatim transcription and thematic analysis. Interviews were conducted with experts in dementia care and/or palliative care in England (n = 30). RESULTS: Four key factors influencing good practice in end of life care for people with dementia were identified from the expert interviews: leadership and management of care, integrating clinical expertise, continuity of care, and use of guidelines. CONCLUSIONS: The relationships between the four key factors are important. Leadership and management of care have implications for the successful implementation of guidelines, while the appropriate and timely use of clinical expertise could prevent hospitalisation and ensure continuity of care. A lack of integration across health and social care can undermine continuity of care. Further work is needed to understand how existing guidelines and tools contribute to good practice. DISCLAIMER: This article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP-PG-0611-20005). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

The impact of orthodontic appliances on eating - young people's views and experiences.

OBJECTIVES: Orthodontic appliances are known to cause patients difficulty with eating. Learning more about the issues patients face, while eating with orthodontic appliances in place, will allow us to create more informative and relevant patient information, thereby improving patient compliance and treatment success. This study aims to understand how orthodontic appliances impact on eating in the broader context and to explore adolescent patients' perceptions of eating with orthodontic appliances. METHODS: Purposive sampling was used and 19 participants currently undergoing orthodontic treatment and aged 11-14 years were selected for either a focus group or semi-structured interview to explore eating-related issues. Data collection and analysis were carried out as an iterative process broadly following principles of thematic analysis. Data collection ceased when no new themes emerged. RESULTS: Two main themes relating to eating problems emerged: restriction of food choice and problems associated with the eating process. Participants reported restricting food choice due to physical aspects of the appliance, advice given by their orthodontist, fear of breakage and also to minimize embarrassment. Participants also reported problems with the time taken to eat, chewing problems, taste change and being messy while eating. Additionally, time in treatment, the location of eating and relationship with those present during eating influenced emotions. Some participants indicated a positive impact of orthodontic appliances on their diet. CONCLUSIONS: These results can be used to further inform dietary advice offered to patients. Factors were identified which may not be considered in clinical practice but which could improve the value of dietary advice given to patients.