Now showing items 1-20 of 1257

    • Living well with dementia: what is possible and how to promote it

      Quinn, Catherine; Pickett, James A.; Litherland, R.; Morris, R.G.; Martyr, A.; Clare, L. (2021)
      Key points: The focus on living well with dementia encourages a more positive and empowering approach. The right support can improve the experience of living with dementia. An holistic approach to assessing the needs of people with dementia and identifying the factors that impact on their well-being is essential. Enabling people to live better requires a broad approach that encompasses both health and social systems and the wider community.
    • Psychological and social factors associated with coexisting frailty and cognitive impairment: A systematic review

      Ellwood, Alison; Mountain, Gail; Quinn, Catherine (2021)
      Those living with coexistent frailty and cognitive impairment are at risk of poorer health outcomes. Research often focuses on identifying biological factors. This review sought to identify the association psychological and social factors have with coexisting physical and cognitive decline. Six databases were systematically searched in July 2020. Studies included individuals aged 60 years or older identified as being both frail and cognitively impaired. A narrative synthesis examined patterns within the data. Nine studies were included, most employed a cross-sectional design. Depression was investigated by all nine studies, those with coexistent frailty and cognitive impairment had higher levels of depressive symptoms than peers. Findings were mixed on social factors, although broadly indicate lower education, living alone and lower material wealth were more frequent in those living with coexistent decline. Further research is needed to explore potentially modifiable psychological and social factors which could lead to the development of supportive interventions.
    • Impact of dementia care education and training on health and social care staff knowledge, attitudes and confidence: a cross-sectional survey

      Parveen, Sahdia; Smith, S.J.; Sass, C.; Oyebode, Jan R.; Capstick, Andrea; Dennison, Alison; Surr, C.A. (2021-01-19)
      The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training. Cross-sectional survey study. Data collection occurred in 2017. Health and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes. All health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%). Knowledge, attitude and confidence of health and social care staff. Hierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01). The results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.
    • Fidelity and the impact of patient safety huddles on teamwork and safety culture: an evaluation of the Huddle Up for Safer Healthcare (HUSH) project.

      Lamming, Laura; Montague, Jane; Crosswaite, Kate; Faisal, Muhammad; McDonach, E.; Mohammed, A. Mohammed; Cracknell, A.; Lovatt, A.; Slater, B. (2021-10-01)
      The Patient Safety Huddle (PSH) is a brief multidisciplinary daily meeting held to discuss threats to patient safety and actions to mitigate risk. Despite growing interest and application of huddles as a mechanism for improving safety, evidence of their impact remains limited. There is also variation in how huddles are conceived and implemented with insufficient focus on their fidelity (the extent to which delivered as planned) and potential ways in which they might influence outcomes. The Huddle Up for Safer Healthcare (HUSH) project attempted to scale up the implementation of patient safety huddles (PSHs) in five hospitals - 92 wards - across three UK NHS Trusts. This paper aims to assess their fidelity, time to embed, and impact on teamwork and safety culture. A multi-method Developmental Evaluation was conducted. The Stages of Implementation Checklist (SIC) was used to determine time taken to embed PSHs. Observations were used to check embedded status and fidelity of PSH. A Teamwork and Safety Climate survey (TSC) was administered at two time-points: pre- and post-embedding. Changes in TSC scores were calculated for Trusts, job role and clinical speciality. Observations confirmed PSHs were embedded in 64 wards. Mean fidelity score was 4.9/9. PSHs frequently demonstrated a 'fear free' space while Statistical Process Control charts and historical harms were routinely omitted. Analysis showed a positive change for the majority (26/27) of TSC questions and the overall safety grade of the ward. PSHs are feasible and effective for improving teamwork and safety culture, especially for nurses. PSH fidelity criteria may need adjusting to include factors deemed most useful by frontline staff. Future work should examine inter-disciplinary and role-based differences in TSC outcomes.
    • Moving and handling and managing physiological deterioration of deceased children in hospice cool rooms: practice guidelines for care after death

      Tatterton, Michael J.; Honour, A.; Billington, D.; Kirkby, L.; Lyon, J.A.; Lyon, N.; Gaskin, G. (2021)
      Children’s hospices provide a range of services for babies, children and young people who have life-shortening conditions, including care after death in specialist ‘cool bedrooms’. Caring for children after death is a challenging area of hospice care, with variation seen within, and between organisations. The study aims to identify current practices and to produce guidelines that promote safe practice in moving and handling and managing physiological deterioration of children after death. An electronic questionnaire was sent to all 54 British children’s hospices; 33 responded (=62% of hospices). Variation in the way in which children’s hospices delivered care after death was identified, in terms of the length of stay, care provision and equipment used, owing to demands of individual families and the experience and confidence of practitioners. Internal variation in practice can lead to practitioner anxiety, and risk-taking when providing care, particularly in the presence of family members. Practice recommendations have been made that reflect the practical demands of caring for a child’s body after death; these have been split into two parts: moving and handling considerations and managing physiological deterioration. These recommendations should be used to support the development of policy and practice, allowing organisations to standardise staff expectations and to support practitioners when caring for children after death.
    • Moving and handling children after death: an inductive thematic analysis of the factors that influence decision-making by children’s hospice staff

      Tatterton, Michael J.; Honour, A.; Kirby, L.; Billington, D. (Lippincott Wolters Kluwer, 2021)
      Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children, in specially-designed chilled bedrooms called ‘cool rooms’. In an effort to develop resources to support hospice practitioners to provide this specialist area of care, the study aimed to identify the factors that influence decision-making when moving and handling children’s bodies after death in a hospice cool bedroom. An internet-based survey was sent to all practitioners employed by one children’s hospice. A total of 94.9% of eligible staff responded (n=56). An inductive approach to thematic analysis was undertaken, using a six-phase methodological framework. Three core themes were identified that inform practitioners’ perception of appropriateness of moving and handling decisions: care of the body, stages of care, and method of handling. The complexity of decision-making and variation in practice was identified. Practitioners relied on both analytical and initiative decision-making, with more experienced practitioners using an intuitive approach. Evidence-based policy and training influence the perception of appropriateness, and the decisions and behaviour of practitioners. The development of a policy and education framework would support practitioners in caring for children’s bodies after death, standardising expectations and measures of competence in relation to moving and handling tasks.
    • Destitution in pregnancy: Forced migrant women’s lived experience

      Ellul, R.; McCarthy, R.; Haith-Cooper, Melanie (2020-11-02)
      Forced migrant women are increasingly becoming destitute whilst pregnant. Destitution may exacerbate their poor underlying physical and mental health. There is little published research that examines this, and studies are needed to ensure midwifery care addresses the specific needs of these women. This study aimed to explore vulnerable migrant women's lived experience of being pregnant and destitute. Six in-depth individual interviews with forced migrant women who had been destitute during their pregnancy were conducted over one year. A lack of food and being homeless impacted on women's physical and mental health. Women relied on support from the voluntary sector to fill the gaps in services not provided by their local authorities. Although midwives were generally kind and helpful, there was a limit to how they could support the women. There is a gap in support provided by local authorities working to government policies and destitute migrant pregnant women should not have to wait until 34 weeks gestation before they can apply for support. Home office policy needs to change to ensure pregnant migrant women receive support throughout their pregnancy.
    • A systematic review of perinatal social support interventions for asylum-seeking and refugee women residing in Europe

      Balaam, M.C.; Kingdon, C.; Haith-Cooper, Melanie (2021)
      Asylum-seeking and refugee women currently residing in Europe face unique challenges in the perinatal period. A range of social support interventions have been developed to address these challenges. However, little is known about which women value and why. A critical interpretive synthesis was undertaken using peer reviewed and grey literature to explore the nature, context and impact of these perinatal social support interventions on the wellbeing of asylum-seeking and refugee women. Four types of interventions were identified which had varying impacts on women’s experiences. The impacts of the interventions were synthesised into five themes: Alleviation of being alone, Safety and trust, Practical knowledge and learning, being cared for and emotional support, and increased confidence in and beyond the intervention. The interventions which were most valued by women were those using a community-based befriending/peer support approach as these provided the most holistic approach to addressing women’s needs.
    • 'Wise up to cancer’; adapting a community-based health intervention to increase UK South Asian women’s uptake of cancer screening

      Payne, Daisy; Haith-Cooper, Melanie; Almas, Nisa (2021)
      UK South Asian women are less likely to engage with cancer screening than the general population and present later with more advanced disease. Tailored interventions are needed to address barriers to these women accessing screening services. 'Wise up to cancer' is a community-based health intervention designed to increase cancer screening uptake. It has been implemented within the general population and a study was undertaken to implement it within a South Asian female community. This paper explores one workstream of the wider 'Wise up to Cancer' study which involved working out how best to adapt the baseline questionnaire (the first part of the intervention) for South Asian women in an inner-city location in Northern England. The aim of this workstream was to evaluate what worked well when implementing the adapted 'Wise up to Cancer' with South Asian women. In 2018, we conducted qualitative semi-structured interviews and focus group with 14 key stakeholders; women who had received the intervention, health champions and community workers to explore their perspectives on how the adapted intervention worked within a South Asian female community. The interviews were audio recorded or (notes taken), data were transcribed verbatim and the dataset was thematically analysed. We found that training peers as community health champions to deliver the intervention to address language and cultural barriers increased participant engagement, was beneficial for the peers and supported participants who revealed difficult social issues they may not have otherwise discussed. Accessing women in established community groups, following planned activities such as English language classes worked but flexibility was needed to meet individual women's needs. Further research is needed to explore the impact of adapting 'Wise up to Cancer' for this community in terms of engaging with cancer screening.
    • A study to assess the feasibility of using a novel digital animation to increase physical activity levels in asylum seeking communities

      Montague, Jane; Haith-Cooper, Melanie (2021)
      The mental health benefits of physical activity and exercise are well-documented and asylum seekers who may have poor mental health could benefit from undertaking recommended levels of physical activity or exercise. Digital mobile applications are increasingly seen as feasible to precipitate behaviour change and could be a means to encourage asylum seekers to increase their levels of physical activity and exercise. This paper reports on a study that aimed to assess the feasibility of asylum seekers using the digital animation as a tool to change behaviour and increase their physical activity and exercise levels. A feasibility study underpinned by the principles of the COM-B behaviour change model was undertaken in West Yorkshire, UK, in 2019. Thirty participants were purposively recruited and interviewed. Peer interpreters were used as necessary. Deductive thematic analysis was undertaken to analyse the data. Overall, participants were positive about the feasibility of asylum seekers using the application as a behaviour change intervention. All expressed the view that it was easy to follow and would motivate them to increase their physical activity levels. Participants identified facilitators to this as the simplicity of the key messages, the cultural neutrality of the graphics and the availability of the mobile application in different languages. Identified barriers related to the dialect and accents in the translations and the over-simplicity of the application. This study has identified that a targeted digital animation intervention could help asylum seekers change their behaviour and hence improve their health and well-being. In designing such interventions, however, researchers must strongly consider co-design from an early stage as this is an important way to ensure that the development of an intervention is fit for purpose for different groups.
    • Does awareness of condition help people with mild-to-moderate dementia to live well?

      Alexander, C.M.; Martyr, A.; Gamble, L.D.; Savage, S.A.; Quinn, Catherine; Morris, R.G.; Clare, L. (2021-09-25)
      People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.
    • Can handheld POC capillary lactate measurement be used with arterial and venous laboratory testing methods in the identification of sepsis?

      Lightowler, Bryan; Hoswell, Anthony (Mark Allen Group, 2016)
      The aim of this review was to examine whether the measurement of lactate in capillary blood samples using point-of-care handheld analysers corresponds sufficiently closely with arterial and venous whole-blood samples analysed by hospital central laboratory or blood gas analyser to be used interchangeably. A systematic search, informed by focused inclusion/exclusion criteria, was performed using multiple databases up to October 2015. A total of 65 articles were considered to have potential relevance and were evaluated in full text, of which ultimately five articles met all inclusion/exclusion criteria, and a final four were selected after data extraction and quality appraisal. All four studies found a predominantly upward bias in the measurement of lactate in capillary samples tested using a handheld point-of-care device over arterial or venous samples tested by laboratory methods or blood gas analyser. In terms of correlation, there was consensus between the studies that the strength of association between the two methods of measurement was statistically significant. Three studies directly examined the extent of agreement between point-of-care capillary lactate measurements and those of laboratory or blood gas analyser reference determined to ±2 standard deviations; 95% confidence intervals, and report contextually broad limits of agreement, identifying a potential for both over triage and, to a lesser extent, under triage. The findings of the review do not support interchangeable use of handheld fingertip point-of-care lactate measurement with laboratory or blood gas analyser methods in the identification of sepsis.
    • The ambulance service advanced practitioner's role in supporting care homes: a qualitative study of care staff experiences

      Harvey, C., Froggatt, S., Lightowler, B. and Hodge, A.,; Harvey, C.; Froggatt, S.; Lightowler, Bryan; Hodge, A. (Mark Allen Group, 2021-08-02)
      The demand from care homes on NHS services continues to rise, with little evidence of ambulance service contribution in this area. The Yorkshire Ambulance Service provides an advanced practitioner model to support care homes in Sheffield, as an alternative to calling 999. This study investigated the experiences and needs of the care home staff who use the ambulance service advanced practitioner model. This qualitative study conducted semi-structured, face-to-face interviews with 19 staff members from 10 different care home settings. Thematic analysis using a combination of NVivo and manual coding was undertaken. The three key themes from the interviews were variations in service demand, the service user’s expectations and experience, and benefits to residents. Participants reported that good community services reduced the need to call 999, empowering carers to support residents to remain in the community. Care homes require comprehensive services that meet their needs. The advanced practitioner model provided by the ambulance service supports this, preventing unnecessary 999 calls and fitting with other community service provision.
    • Advancing the Understanding of the Role of Responsible AI in the Continued Use of IoMT in Healthcare

      Al-Dhaen, Fatema; Hou, Jiachen; Rana, Nripendra P.; Weerakkody, Vishanth J.P. (Information Systems Frontiers, 2021)
      This paper examines the continuous intention by healthcare professionals to use the Internet of Medical Things (IoMT) in combination with responsible artificial intelligence (AI). Using the theory of Diffusion of Innovation (DOI), a model was developed to determine the continuous intention to use IoMT taking into account the risks and complexity involved in using AI. Data was gathered from 276 healthcare professionals through a survey questionnaire across hospitals in Bahrain. Empirical outcomes reveal nine significant relationships amongst the constructs. The findings show that despite contradictions associated with AI, continuous intention to use behaviour can be predicted during the diffusion of IoMT. This study advances the under- standing of the role of responsible AI in the continued use of IoMT in healthcare and extends DOI to address the diffusion of two innovations concurrently.
    • Predictive accuracy of enhanced versions of the on-admission National Early Warning Score in estimating the risk of COVID-19 for unplanned admission to hospital: a retrospective development and validation study

      Faisal, Muhammad; Mohammed, A. Mohammed; Richardson, D.; Steyerberg, E.W.; Fiori, M.; Beatson, K. (2021-09-13)
      The novel coronavirus SARS-19 produces 'COVID-19' in patients with symptoms. COVID-19 patients admitted to the hospital require early assessment and care including isolation. The National Early Warning Score (NEWS) and its updated version NEWS2 is a simple physiological scoring system used in hospitals, which may be useful in the early identification of COVID-19 patients. We investigate the performance of multiple enhanced NEWS2 models in predicting the risk of COVID-19. Our cohort included unplanned adult medical admissions discharged over 3 months (11 March 2020 to 13 June 2020 ) from two hospitals (YH for model development; SH for external model validation). We used logistic regression to build multiple prediction models for the risk of COVID-19 using the first electronically recorded NEWS2 within ± 24 hours of admission. Model M0' included NEWS2; model M1' included NEWS2 + age + sex, and model M2' extends model M1' with subcomponents of NEWS2 (including diastolic blood pressure + oxygen flow rate + oxygen scale). Model performance was evaluated according to discrimination (c statistic), calibration (graphically), and clinical usefulness at NEWS2 ≥ 5. The prevalence of COVID-19 was higher in SH (11.0 %=277/2520) than YH (8.7 %=343/3924) with a higher first NEWS2 scores ( SH 3.2 vs YH 2.8) but similar in-hospital mortality (SH 8.4 % vs YH 8.2 %). The c-statistics for predicting the risk of COVID-19 for models M0',M1',M2' in the development dataset were: M0': 0.71 (95 %CI 0.68-0.74); M1': 0.67 (95 %CI 0.64-0.70) and M2': 0.78 (95 %CI 0.75-0.80)). For the validation datasets the c-statistics were: M0' 0.65 (95 %CI 0.61-0.68); M1': 0.67 (95 %CI 0.64-0.70) and M2': 0.72 (95 %CI 0.69-0.75) ). The calibration slope was similar across all models but Model M2' had the highest sensitivity (M0' 44 % (95 %CI 38-50 %); M1' 53 % (95 %CI 47-59 %) and M2': 57 % (95 %CI 51-63 %)) and specificity (M0' 75 % (95 %CI 73-77 %); M1' 72 % (95 %CI 70-74 %) and M2': 76 % (95 %CI 74-78 %)) for the validation dataset at NEWS2 ≥ 5. Model M2' appears to be reasonably accurate for predicting the risk of COVID-19. It may be clinically useful as an early warning system at the time of admission especially to triage large numbers of unplanned hospital admissions.
    • Diagnostic radiographer advanced clinical practice in the United Kingdom - A national cross-sectional survey

      Woznitza, N.; Pittock, L.; Elliott, J.; Snaith, Beverly (2021-07-28)
      To survey the diagnostic radiography workforce in the United Kingdom (UK) at an organisational level to ascertain the scope of advanced practice and compliance with Health Education England standards for multiprofessional advanced clinical practice (ACP). 174 diagnostic imaging departments were invited to participate in a cross-sectional electronic survey focused upon advanced level practice and their educational and accreditation expectations (October-December 2019). Breast imaging, computed tomography, fluoroscopy, interventional radiology, lithotripsy, magnetic resonance imaging and projectional radiography were included. A total of 97 responses were received, of which 79 were eligible for inclusion (45%). Respondents reported advanced-level practice roles across all imaging modalities, which included clinical reporting, procedural-based and combined roles. Radiograph and mammogram reporting were most prevalent (95 and 67% of Trusts), with fluoroscopy the most frequent procedure-only role (25%). Only 39% of trusts required adherence to the four pillars of ACP within job descriptions, and only 12% requiring a full Masters qualification. Diagnostic radiographer reporting and procedure-based roles in the NHS are varied and widespread. However, inconsistencies in fulfilment against the expected standards for advanced practice exist. Realignment of advanced-level roles to delineate enhanced and advanced clinical practice may ensure consistency between roles and professions. A requirement for accreditation as an advanced (clinical) practitioner with adherence to advanced practice requirements could therefore provide value to accreditation for both individual practitioners and Trusts. Within the UK, diagnostic radiographer roles previously self-identified as advanced-level practice may be termed enhanced practice when not adhering to expected ACP standards.
    • Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia

      Capstick, Andrea; Dennison, Alison; Oyebode, Jan R.; Healy, Lesley; Surr, Claire A.; Parveen, Sahdia; Sass, C.; Drury, Michelle (Wiley, 2021)
      Background: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence involvement has on research outcomes, over-reliance on family members as proxies, and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed in order to make possible the involvement of a broader spectrum of people living with dementia. Objective: To adapt the PPIE process in order to make participation in co-creation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design: Narrative elicitation, informal conversation, and observation were used to co-create three vignettes based on PPIE group members’ personal experience of dementia services. Each vignette was produced in both narrative and graphic formats. Participants: Nine people living with dementia and five family members. Results: Using enhanced methods and outreach it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed.
    • Hypertension in older adults in Africa: A systematic review and meta-analysis

      Bosu, W.K.; Reilly, Siobhan T.; Aheto, J.M.K.; Zucchelli, E. (2019-04)
      Background: Hypertension is the leading driver of cardiovascular disease deaths in Africa. Its prevalence is highest in older populations. Yet, this group has received little attention in many African countries. We conducted a systematic review and meta-analysis (PROSPERO registration: CRD42017056474) to estimate the prevalence of hypertension in older adults living in Africa. Methods: We searched grey literature and major electronic databases including PubMed and Embase for population-based studies and published between 1 January 1980 to 28 May 2018 reporting the prevalence of hypertension for adults aged ≥50 years living in Africa. We employed a random effects model to estimate the pooled prevalence across included studies. Findings: We screened 10,719 articles and retrieved 103 full-text articles to evaluate for inclusion in the review. Thirty-four unique studies providing 37 data points on 43,025 individuals in 15 African countries were analyzed. The prevalence of hypertension ranged from 22.3% to 90.0% from the individual studies while the overall pooled prevalence was 57.0% (95% CI 52%-61%). The prevalence was not statistically significantly different by sex, residence, or African sub-region. In individual studies, older age and overweight/obesity were independently associated with hypertension. Twenty-nine (78%) data points were deemed to be of low- or moderate-risk of bias. Eliminating high-risk bias studies made little difference to the pooled estimate of hypertension. Sensitivity analyses, omitting one study at a time, identified three studies with significant but relatively small impact on the pooled estimate. We observed substantial heterogeneity (I2 = 98.9%) across the studies which was further explored by meta-regression analyses. Overall, the GRADE assessment suggested moderate quality evidence in the results. Conclusion: The persistent high prevalence of hypertension among older adults in Africa, even in rural populations warrants more attention to the cardiovascular health of this group by public health authorities
    • A core outcome set for nonpharmacological community-based interventions for people living with dementia at home: A systematic review of outcome measurement instruments

      Harding, A.J.E.; Morbey, H.; Ahmed, F.; Opdebeeck, C.; Elvish, R.; Leroi, I.; Williamson, P.R.; Keady, J.; Reilly, Siobhan T. (2021)
      It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from over 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. We extracted self-reported OMIs from trials, reviews and reports of instrument development. Searches were undertaken in the ALOIS database, Medline, PsycINFO, CINAHL, socINDEX and COSMIN database. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency and responsiveness. We held a co-research workshop involving people living with dementia and care partners in order to ratify the findings. In total 347 OMIs were located from 354 sources. Of these 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the COS items, and no OMIs proceeded to further assessment. The 'best' available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q). This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.
    • What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions

      Reilly, Siobhan T.; Harding, A.J.E.; Morbey, H.; Ahmed, F.; Williamson, P.R.; Swarbrick, C.; Leroi, I.; Davies, L.; Reeves, D.; Holland, F.; et al. (2020-07)
      Objectives: Inconsistency in outcome measurement in dementia care trials impedes the comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Method: We used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018. Results: Of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers), 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items. Conclusion: We identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions are most likely to be valued highly by people living with dementia.