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  • 1
    Online Resource
    Online Resource
    Survival and critical care use among people with dementia in a large English cohort
    Oxford University Press (OUP) ; 2023
    In:  Age and Ageing Vol. 52, No. 9 ( 2023-09-01)
    Details
    In: Age and Ageing, Oxford University Press (OUP), Vol. 52, No. 9 ( 2023-09-01)
    Abstract: Admitting people with dementia to critical care units may not always lead to a clear survival benefit. Critical care admissions of people with dementia vary across countries. Little is known about the use and trends of critical care admissions of people with dementia in England. Objective To investigate critical care use and survival among people with dementia in a large London catchment area. Methods A retrospective cohort study using data from dementia assessment services in south London, UK (2007–20) linked with national hospitalisation data to ascertain critical care admissions. Outcomes included age–sex-standardised critical care use and 1-year post-critical care admission survival by dementia severity (binary: mild versus moderate/severe). We used logistic regression and Kaplan–Meier survival plots for investigating 1-year survival following a critical care admission and linear regressions for time trends. Results Of 19,787 people diagnosed with dementia, 726 (3.7%) had ≥1 critical care admission at any time after receiving their dementia diagnosis. The overall 1-year survival of people with dementia, who had a CCA, was 47.5% (n = 345). Dementia severity was not associated with 1-year survival following a critical care admission (mild dementia versus moderate–severe dementia odds of 1-year mortality OR: 0.90, 95% CI [0.66–1.22]). Over the 12-year period from 2008 to 2019, overall critical care use decreased (β = −0.05; 95% CI = −0.01, −0.0003; P = 0.03), while critical care admissions occurring during the last year of life increased (β = 0.11, 95% CI = 0.01, 0.20, P = 0.03). Conclusions In this cohort, while critical care use among people with dementia declined overall, its use increased among those in their last year of life. Survival remains comparable to that observed in general older populations.
    Type of Medium: Online Resource
    ISSN: 0002-0729 , 1468-2834
    URL: Article
    DOI: 10.1093/ageing/afad157
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2023
    detail.hit.zdb_id: 2065766-3
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  • 2
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    Communication about sexual orientation and gender between clinicians, LGBT+ people facing serious illness and their significant others: a qualitative interview study of experiences, preferences and recommendations
    BMJ ; 2023
    In:  BMJ Quality & Safety Vol. 32, No. 2 ( 2023-02), p. 109-120
    Details
    In: BMJ Quality & Safety, BMJ, Vol. 32, No. 2 ( 2023-02), p. 109-120
    Abstract: Healthcare organisations have legal and ethical duties to reduce inequalities in access to healthcare services and related outcomes. However, lesbian, gay, bisexual and/or transgender (LGBT+) people continue to experience and anticipate discrimination in health and social care. Skilled communication is vital for quality person-centred care, but there is inconsistent provision of evidence-based clinician education on health needs and experiences of LGBT+ people to support this. This study aimed to identify key stakeholders’ experiences, preferences and best practices for communication regarding sexual orientation, gender identity and gender history in order to reduce inequalities in healthcare. Methods Semistructured qualitative interviews with LGBT+ patients with serious illness, significant others and clinicians, recruited via UK-wide LGBT+ groups, two hospitals and one hospice in England. We analysed the interview data using reflexive thematic analysis. Results 74 stakeholders participated: 34 LGBT+ patients with serious illness, 13 significant others and 27 multiprofessional clinicians. Participants described key communication strategies to promote inclusive practice across three domains: (1) ‘Creating positive first impressions and building rapport’ were central to relationship building and enacted through routine use of inclusive language, avoiding potentially negative non-verbal signals and echoing terminology used by patients and caregivers; (2) ‘Enhancing care by actively exploring and explaining the relevance of sexual orientation and gender identity’, participants described the benefits of clinicians initiating these discussions, pursuing topics guided by the patient’s response or expressed preferences for disclosure. Active involvement of significant others was encouraged to demonstrate recognition of the relationship; these individual level actions are underpinned by a foundation of (3) ‘visible and consistent LGBT+ inclusiveness in care systems’. Although participants expressed hesitance talking about LGBT+ identities with individuals from some sociocultural and religious backgrounds, there was widespread support for institutions to adopt a standardised, LGBT+ inclusive, visibly supportive approach. Conclusions Person-centred care can be enhanced by incorporating discussions about sexual orientation and gender identity into routine clinical practice. Inclusive language and sensitive exploration of relationships and identities are core activities. Institutions need to support clinicians through provision of adequate training, resources, inclusive monitoring systems, policies and structures. Ten inclusive communication recommendations are made based on the data.
    Type of Medium: Online Resource
    ISSN: 2044-5415 , 2044-5423
    URL: Article
    DOI: 10.1136/bmjqs-2022-014792
    Language: English
    Publisher: BMJ
    Publication Date: 2023
    detail.hit.zdb_id: 2592912-4
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  • 3
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    Is end-of-life care a priority for policymakers? Qualitative documentary analysis of health care strategies
    SAGE Publications ; 2018
    In:  Palliative Medicine Vol. 32, No. 9 ( 2018-10), p. 1474-1486
    Details
    In: Palliative Medicine, SAGE Publications, Vol. 32, No. 9 ( 2018-10), p. 1474-1486
    Abstract: Prioritisation of end-of-life care by policymakers has been the subject of extensive rhetoric, but little scrutiny. In England, responsibility for improving health and care lies with 152 regional Health and Wellbeing Boards. Aim: To understand the extent to which Health and Wellbeing Boards have identified and prioritised end-of-life care needs and their plans for improvement. Design: Qualitative documentary analysis of Health and Wellbeing Strategies. Summative content analysis to quantify key concepts and identify themes. Data sources: Strategies were identified from Local Authority web pages and systematically searched to identify relevant content. Results: In total, 150 strategies were identified. End-of-life care was mentioned in 78 (52.0%) and prioritised in 6 (4.0%). Four themes emerged: (1) clinical context – in 43/78 strategies end-of-life care was mentioned within a specific clinical context, most often ageing and dementia; (2) aims and aspirations – 31 strategies identified local needs and/or quantifiable aims, most related to the place of death; (3) narrative thread – the connection between need, aim and planned intervention was disjointed, just six strategies included all three components; and (4) focus of evidence – where cited, evidence related to evidence of need, not evidence for effective interventions. Conclusion: Half of Health and Wellbeing Strategies mention end-of-life care, few prioritise it and none cite evidence for effective interventions. The absence of connection between need, aim and intervention is concerning. Future research should explore whether and how strategies have impacted on local populations.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/0269216318786333
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2018
    detail.hit.zdb_id: 2027566-3
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  • 4
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    The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review
    SAGE Publications ; 2020
    In:  Palliative Medicine Vol. 34, No. 8 ( 2020-09), p. 1006-1018
    Details
    In: Palliative Medicine, SAGE Publications, Vol. 34, No. 8 ( 2020-09), p. 1006-1018
    Abstract: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/0269216320932774
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2020
    detail.hit.zdb_id: 2027566-3
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  • 5
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    ‘It doesn't do the care for you': a qualitative study of health care professionals' perceptions of the benefits and harms of integrated care pathways for end of life care: Figure 1
    BMJ ; 2015
    In:  BMJ Open Vol. 5, No. 9 ( 2015-09), p. e008242-
    Details
    In: BMJ Open, BMJ, Vol. 5, No. 9 ( 2015-09), p. e008242-
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2015-008242
    Language: English
    Publisher: BMJ
    Publication Date: 2015
    detail.hit.zdb_id: 2599832-8
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  • 6
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    The Second Conversation project: ­Improving training in end of life care communication among junior doctors
    Elsevier BV ; 2019
    In:  Future Healthcare Journal Vol. 6, No. 2 ( 2019-06), p. 129-136
    Details
    In: Future Healthcare Journal, Elsevier BV, Vol. 6, No. 2 ( 2019-06), p. 129-136
    Type of Medium: Online Resource
    ISSN: 2514-6645
    URL: Article
    DOI: 10.7861/futurehosp.6-2-129
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2019
    detail.hit.zdb_id: 3016427-8
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  • 7
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    Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations
    SAGE Publications ; 2023
    In:  Palliative Medicine Vol. 37, No. 7 ( 2023-07), p. 1034-1039
    Details
    In: Palliative Medicine, SAGE Publications, Vol. 37, No. 7 ( 2023-07), p. 1034-1039
    Abstract: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. Aim: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. Design: Retrospective cohort study using population-based individual-level mortality data. Setting/participants: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent’s area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. Results: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. Conclusions: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/02692163231167212
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
    detail.hit.zdb_id: 2027566-3
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  • 8
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    Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV)
    Springer Science and Business Media LLC ; 2023
    In:  Health and Quality of Life Outcomes Vol. 21, No. 1 ( 2023-03-24)
    Details
    In: Health and Quality of Life Outcomes, Springer Science and Business Media LLC, Vol. 21, No. 1 ( 2023-03-24)
    Abstract: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale–IPOS-COV for severe COVID using psychometric approach. Methods We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. Results In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12–24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item–total correlations (0.62–0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3–0.5, 95% CI, n  = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13–0.26) but significant ( p   〈  0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p   〈  0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. Conclusions IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.
    Type of Medium: Online Resource
    ISSN: 1477-7525
    URL: Article
    DOI: 10.1186/s12955-023-02102-4
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2098765-1
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  • 9
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    Priorities and opportunities for palliative and end of life care in United Kingdom health policies: a national documentary analysis
    Springer Science and Business Media LLC ; 2021
    In:  BMC Palliative Care Vol. 20, No. 1 ( 2021-12)
    Details
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 20, No. 1 ( 2021-12)
    Abstract: Access to high-quality palliative care is inadequate for most people living and dying with serious illness. Policies aimed at optimising delivery of palliative and end of life care are an important mechanism to improve quality of care for the dying. The extent to which palliative care is included in national health policies is unknown. We aimed to identify priorities and opportunities for palliative and end of life care in national health policies in the UK. Methods Documentary analysis consisting of 1) summative content analysis to describe the extent to which palliative and end of life care is referred to and/or prioritised in national health and social care policies, and 2) thematic analysis to explore health policy priorities that are opportunities to widen access to palliative and end of life care for people with serious illness. Relevant national policy documents were identified through web searches of key government and other organisations, and through expert consultation. Documents included were UK-wide or devolved (i.e. England, Scotland, Northern Ireland, Wales), health and social care government strategies published from 2010 onwards. Results Fifteen policy documents were included in the final analysis. Twelve referred to palliative or end of life care, but details about what should improve, or mechanisms to achieve this, were sparse. Policy priorities that are opportunities to widen palliative and end of life care access comprised three inter-related themes: (1) integrated care – conceptualised as reorganisation of services as a way to enable improvement; (2) personalised care – conceptualised as allowing people to shape and manage their own care; and (3) support for unpaid carers – conceptualised as enabling unpaid carers to live a more independent lifestyle and balance caring with their own needs. Conclusions Although information on palliative and end of life care in UK health and social care policies was sparse, improving palliative care may provide an evidence-based approach to achieve the stated policy priorities of integrated care, personalised care, and support for unpaid carers. Aligning existing evidence of the benefits of palliative care with the three priorities identified may be an effective mechanism to both strengthen policy and improve care for people who are dying.
    Type of Medium: Online Resource
    ISSN: 1472-684X
    URL: Article
    DOI: 10.1186/s12904-021-00802-6
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2091556-1
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  • 10
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    Symptom management in people dying with COVID-19: multinational observational study
    BMJ ; 2022
    In:  BMJ Supportive & Palliative Care Vol. 12, No. 4 ( 2022-12), p. 439-447
    Details
    In: BMJ Supportive & Palliative Care, BMJ, Vol. 12, No. 4 ( 2022-12), p. 439-447
    Abstract: To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. Methods We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect. Results 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient’s condition, route of administration and dose. Conclusions Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms.
    Type of Medium: Online Resource
    ISSN: 2045-435X , 2045-4368
    URL: Article
    DOI: 10.1136/spcare-2022-003799
    Language: English
    Publisher: BMJ
    Publication Date: 2022
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