'That's as hard a decision as you will ever have to make': the experiences of people who discussed Do Not Attempt Cardiopulmonary Resuscitation on behalf of a relative during the COVID-19 pandemic.

BACKGROUND: COVID-19 brought additional challenges to Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision-making, which was already a contentious issue. In the UK, reports of poor DNACPR decision-making and communication emerged in 2020, including from the regulator, the Care Quality Commission. This paper explores the experiences of people who discussed DNACPR with a healthcare professional on behalf of a relative during the coronavirus pandemic, with the aim of identifying areas of good practice and what needs to be improved. METHODS: a total of 39 people participated in semi-structured interviews via video conferencing software or telephone. Data were evaluated using Framework Analysis. FINDINGS: results are presented around three main themes: understanding, communication and impact. Participants' understanding about DNACPR was important, as those with better understanding tended to reflect more positively on their discussions with clinicians. The role of relatives in the decision-making process was a frequent source of misunderstanding. Healthcare professionals' communication skills were important. Where discussions went well, relatives were given clear explanations and the opportunity to ask questions. However many relatives felt that conversations were rushed. DNACPR discussions can have a lasting impact-relatives reported them to be significant moments in care journeys. Many relatives perceived that they were asked to decide whether their relative should receive CPR and described enduring emotional consequences, including guilt. CONCLUSION: the pandemic has illuminated deficiencies in current practice around DNACPR discussion, which can have difficult to anticipate and lasting negative consequences for relatives. This research raises questions about the current approach to DNACPR decision-making.

A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams.

BACKGROUND: Chimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered. AIM: To explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development. DESIGN: A qualitative longitudinal service evaluation. Sixteen interviews were conducted between December 2020 and March 2021 with patients (n = 10) and family caregivers (n = 4). Thematic analysis was underpinned by a constructivist approach. SETTING/PARTICIPANTS: All patients and caregivers attending one UK centre for CAR-T therapy were eligible. Semi-structured interviews were conducted at specific time points: prior to infusion, one month after infusion and follow-up post-treatment (5-18 months). RESULTS: Identified themes described the unique challenges of CAR-T therapy. From the point of referral patients had a wide range of supportive care needs. Initially, this was attributed to prior receipt of multiple failed treatments. Subsequently, CAR-T side-effects impacted on quality-of-life and physical function. Significant psychological morbidity from prognostic uncertainty was described throughout. Patients and caregivers reported that a dedicated nurse specialist - an expert, consistent point of contact - was essential. CONCLUSION: Patients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.

Advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation: A qualitative study exploring barriers, facilitators and patients' and healthcare professionals' recommendations.

BACKGROUND: Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. AIM: This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice. STUDY DESIGN: A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England. RESULTS: Three themes ('overlooked', 'disjointed care' and 'awareness and expertise') were identified. Patients with chronic obstructive pulmonary disease are a 'forgotten about' population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning. CONCLUSIONS: Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care.

Unrepresented, unheard and discriminated against: A qualitative exploration of relatives' and professionals' views of palliative care experiences of people of African and Caribbean descent during the COVID-19 pandemic.

BACKGROUND: People of African and Caribbean descent experienced disproportionately high mortality from COVID-19 and have poor access to palliative care. AIM: To explore palliative care experiences of people of African and Caribbean descent during and immediately prior to the pandemic. DESIGN: Qualitative interview study with thematic analysis. Refinement of themes/recommendations in consultation with an expert patient and public advisory group. SETTING/PARTICIPANTS: Twenty-six bereaved relatives and 13 health/social care professionals (cared for people of African and Caribbean descent) from throughout England, recruited using social media, community networks and direct advertising to over 150 organisations. RESULTS: Three themes were identified: Representation: Participants did not see themselves reflected in the palliative care services and did not expect their needs to be understood. Mistrust of the healthcare system and perceptions of racism were common and led to anticipation of inequitable care. Personalisation: Relatives and professionals reported a lack of cultural and religious sensitivity in healthcare. Assumptions were made based on ethnicity, and services not offered to all. Awareness and education: Professionals felt they lacked the knowledge to provide care to diverse communities, but were reluctant to ask, due to fear of making mistakes. Inequitable access to services was exacerbated by, but not unique to, the pandemic. Participants recommended raising awareness of palliative services, building professional competence in culturally-sensitive care, and greater ethnic diversity within services. CONCLUSIONS: Person-centred, culturally-competent palliative care is not the norm for people of African and Caribbean descent. Expectations of inequitable care are widespread. Sustained action on multiple fronts is needed.

Palliation, end of life care and ventilation withdrawal in neuromuscular disorders.

BACKGROUND/OBJECTIVES: The role of palliative care in the support of patients with neuromuscular disorders (NMDs) is generally recognised in spite of the scarcity of condition-specific evidence in the literature. METHODS: We have focussed specifically on palliative and end-of-life care for patients whose neuromuscular disease has an impact on their respiratory function. Reviewing the literature, we have examined where existing palliative care knowledge can be applied to the specific challenges faced by patients with NMDs, identifying where lessons learnt during the management of one condition may need to be judiciously applied to others. RESULTS: We highlight lessons for clinical practice centring on six themes: management of complex symptoms; crisis support; relief of caregiver strain; coordination of care; advance care planning; and end of life care. CONCLUSIONS: The principles of palliative care are well suited to addressing the complex needs of patients with NMDs and should be considered early in the course of illness rather than limited to care at the end of life. Embedding relationships with specialist palliative care services as part of the wider neuromuscular multidisciplinary team can facilitate staff education and ensure timely referral when more complex palliative care problems arise.

The Clinical Frailty Scale can indicate prognosis and care requirements on discharge in oncology and haemato-oncology inpatients: A cohort study.

OBJECTIVES: Routinely used performance status scales, assessing patients' suitability for cancer treatment, have limited ability to account for multimorbidity, frailty and cognition. The Clinical Frailty Scale (CFS) is a suggested alternative, but research detailing its use in oncology is limited. This study aims to evaluate if CFS is associated with prognosis and care needs on discharge in oncology inpatients. METHODS: We evaluated a large, single-centre cohort study in this research. CFS was recorded for adult inpatients at a Regional Cancer Centre. The associations between CFS, age, tumour type, discharge destination and care requirements and survival were evaluated. RESULTS AND CONCLUSIONS: A total of 676 patients were included in the study. Levels of frailty were high (Median CFS 6, 81.8% scored ≥5) and CFS correlated with performance status (R = 0.13: P = 0.047). Patients who were frail (CFS ≥ 5) were less likely to be discharged home (62.9%) compared with those who were not classed as frail (86.1%) (OR 3.6 [95%CI 2.1 to 6.3]: P < 0.001). Higher CFS was significantly associated with poorer prognosis in all ages. Solid organ malignancy (hazard ratio [HR] 2.60 [95%CI 2.05-3.32]) and CFS (HR 1.43 [95%CI 1.29-1.59]; P < 0.001) were independently associated with poorer survival. This study demonstrated that CFS may help predict prognosis in adult oncology inpatients of any age. This may aid informed shared decision-making in this setting. Future work should establish if routine CFS measurement can aid the appropriate prescription of systemic therapy and enable early conversations about discharge planning.

A qualitative study of nursing staff experiences of delirium in the hospice setting.

BACKGROUND:: Delirium is a common condition occurring in 13-42% of people admitted to palliative care units and up to 88% of these patients are at the end of their lives. It is frequently unrecognised and distressing to all those affected-patients, families and health professionals. In addition, there is considerable uncertainty surrounding its trajectory and optimal management, both of which can be inconsistent. AIMS:: This study aims to explore the experience of nursing staff who are caring for patients with delirium in the hospice environment and understand any potential barriers to its management. METHODS:: Semistructured interviews using emotional touchpoints were conducted with 12 nurses and six healthcare assistants in three hospices in North East England. Data was analysed using interpretative phenomenological analysis. FINDINGS:: The results highlighted gaps in knowledge and understanding in the management of delirium. The results demonstrated delirium had significant emotional effects, which were associated with uncertainty in managing the condition and the impact of this uncertainty on the relationship between staff and patients. CONCLUSION:: This study highlights the emotional impact of caring for patients with delirium. Future work is needed to address the areas of uncertainty identified and ascertain how to best support nursing staff in these challenges.

"We never speak about death." Healthcare professionals' views on palliative care for inpatients in Tanzania: A qualitative study.

ABSTRACTObjective:Little is known about the current views and practices of healthcare professionals (HCPs) in Sub-Saharan Africa (SSA) regarding delivery of hospital palliative care. The present qualitative study explored the views of nursing staff and medical professionals on providing palliative and end-of-life care (EoLC) to hospital inpatients in Tanzania. METHOD: Focus group discussions were conducted with a purposive sample of HCPs working on the medical and pediatric wards of the Kilimanjaro Christian Medical Centre, a tertiary referral hospital in northern Tanzania. Transcriptions were coded using a thematic approach. RESULTS: In total, 32 healthcare workers were interviewed via 7 focus group discussions and 1 semistructured interview. Four major themes were identified. First, HCPs held strong views on what factors were important to enable individuals with a life-limiting diagnosis to live and die well. Arriving at a state of "acceptance" was the ultimate goal; however, they acknowledged that they often fell short of achieving this for inpatients. Thus, the second theme involved identifying the "barriers" to delivering palliative care in hospital. Another important factor identified was difficulty with complex communications, particularly "breaking bad news," the third theme. Fourth, participants were divided about their personal preferences for "place of EoLC," but all emphasized the benefits of the hospital setting so as to enable better symptom control. SIGNIFICANCE OF RESULTS: Despite the fact that all the HCPs interviewed were regularly involved in providing palliative and EoLC, they had received limited formal training in its provision, although they identified such training as a universal requirement. This training gap is likely to be present across much of SSA. Palliative care training, particularly in terms of communication skills, should be comprehensively integrated within undergraduate and postgraduate education. Research is needed to develop culturally appropriate curricula to equip HCPs to manage the complex communication challenges that occur in caring for a diverse inpatient group with palliative care needs.

Identifying Frailty and its Outcomes in Older People in Rural Tanzania.

Background/Study Context: Interest in frailty is growing in low- and middle-income countries, due to demographic aging and resource limitations. However, there is a paucity of data on the nature of frailty in Africa. METHODS: The study collected frailty data from people aged 70 years and over living in six villages in the rural Hai District of northern Tanzania. At baseline, a limited data set was collected for 1198 people and a more comprehensive data set for a stratified sample of 296 people. A 40-item frailty index was constructed. Data regarding mortality and dependency were collected at 3-year follow-up. RESULTS: A higher frailty index score was significantly correlated with greater age, never having attended school, falls, mortality, and dependency in activities of daily living. Logistic regression modeling revealed functional disability and cognitive function to be significant independent predictors of the outcome "mortality or dependency." CONCLUSIONS: In resource-poor settings, brief frailty screening assessments may be a useful way of identifying those most in need of support.

Screening for delirium in specialist palliative care inpatient units: perceptions and outcomes.

OBJECTIVES: The UK National Institute for Health and Care Excellence (NICE) indicate that palliative care patients are at high risk of delirium and should be screened for it using the short confusion assessment method (short CAM). This study aimed to assess the perceptions of the short CAM for delirium screening amongst health-care workers in specialist palliative care inpatient units (SPCUs) and to investigate its use as a screening instrument. METHODS: Patients in 5 SPCUs in the North East of England were screened for delirium using the short CAM and a staff survey assessed the acceptability of the short-CAM in this setting. RESULTS: Of the 63 staff surveyed, 79.4% felt screening for delirium was important and 59.3% found the short CAM 'not at all' burdensome to complete. However, only 40.7% felt that the short-CAM often accurately reflected patients' conditions and none felt it always accurately reflected patients' condition. Of 298 patients screened, 20% screened positive on the short CAM. Malignant and intra-cerebral diseases were significant independent predictors of a positive screen. Hospice length of stay and in-hospice mortality were higher in those with a positive result (66.7%) than in those without (38.2%). CONCLUSIONS: Health professionals deem delirium screening to be important in SPCUs, but may not support routine use of the short CAM. This could reflect a limited perceived impact on care and lack of confidence in this tool to reflect a complex patient group.

Levels of functional disability in elderly people in Tanzania with dementia, stroke and Parkinson's disease.

BACKGROUND: Disability is associated with increasing age and poverty, yet there are few reliable data regarding disability amongst the elderly in low-income countries. The aim of this study was to compare disability levels for three of the most common neurological, non-communicable diseases: dementia, stroke and Parkinson's disease (PD). METHODS: We performed a community-based study of people aged 70 years and over in 12 randomly selected villages in the rural Hai district of Tanzania. Participants underwent disability assessment using the Barthel Index, and clinical assessment for dementia, stroke and PD. RESULTS: In a representative cohort of 2232 people aged 70 years and over, there were 54 cases of stroke, 12 cases of PD and estimated (by extrapolation from a sub-sample of 1198 people) to be 112 cases of dementia. People with stroke were the most disabled, with 62.9% having moderate or severe disability. Levels of moderate or severe disability were 41.2% in people with dementia and 50.0% in people with PD. However, the higher prevalence of dementia meant that, at a population level, it was associated with similar levels of disability as stroke, with 18.5% of 249 people identified as having moderate or severe disability having dementia, compared to 13.7% for stroke and 2.4% for PD. CONCLUSIONS: Levels of disability from these conditions is high and is likely to increase with demographic ageing. Innovative, community-based strategies to reduce disability levels should be investigated.

Electrocardiographic reference values for a population of older adults in sub-Saharan Africa.

BACKGROUND/OBJECTIVES: Older adults in sub-Saharan Africa (SSA) are at greatest risk of an impending noncommunicable diseases epidemic, of which cardiac disease is the most prevalent contributor. Thus, it is essential to establish electrocardiographic reference values for a population that is likely to differ genetically and environmentally from others where reference values are established. METHODS: Two thousand two hundred thirty-two apparently healthy community-based participants without known cardiac disease aged 70+ in rural Tanzania underwent 12-lead electrocardiography. Electrocardiograms were digitally analyzed and gender-specific reference values for P duration (PD), P amplitude (PAMP), P area (PAREA), P terminal negative force (V1) (PTNF), PR interval, QRS duration (QRSD), QT/QTc, R amplitude (II, V5) (RAMP) LVH index (LVHI), R axis and R/S ratio (V1) reported, following univariate analysis of covariance using a multiple linear regression model, adjusting for age, systolic blood pressure (SBP), body mass index (BMI), and RR interval. RESULTS: Data from 1824 subjects were suitable for analysis. Adjusted mean values for men/women were: PD 115/110 ms, PAMP (avg) 123/114 µV, PAMP (II) 203/190 µV, PAREA (avg) 5.3/4.6 mV*s, PAREA (II) 9.3/8.1 mV*s, PTNF 1.7/1.4 mV*s, PR 158/152 ms, QRSD 89/84 ms, QT 370/375 ms, QTc 421/427 ms, RAMP (II) 805/854 µV, (V5) 2022/1742 µV, LVHI 3.0/2.8 mV (Sokolow-Lyon), 1.293/1.146 mV (Cornell), R axis 51/49°, R/S 0.2/0.2. Excluding PTNF , R axis and R/S ratio, all gender differences were significant (P < 0.001 apart from LVHI [Sokolow-Lyon; P < 0.005)] and RAMP (II) [P < 0.05]) following adjustment for age, SBP, BMI, and RR interval. CONCLUSIONS: Our description of comprehensive electrocardiographic parameters establishes reference values in this genetically and environmentally diverse SSA population thereby allowing identification of "outliers" with potential cardiac disease.

Qualified and motivated, but limited by specialty-specific barriers: a national survey of UK Palliative Medicine consultants research experience.

OBJECTIVES: Providing high-quality safe palliative care requires high-quality clinically driven research. Little is known about how to optimise clinical research capacity in this field.To understand interest and capacity to conduct clinical research in palliative medicine and identify key facilitators and barriers, by surveying palliative medicine consultants and academic trainees. METHODS: National online survey exploring experience in conducting research, including facilitators and barriers. Sent to all current UK palliative medicine consultants, and previous/current academic trainees. Descriptive statistics are reported with framework analysis of free text responses. RESULTS: 195 surveys were submitted including 15 respondents with Integrated Academic Training (IAT) experience. 78% (n=140/180) of consultants were interested in conducting research. Despite this enthusiasm, 83% had no allocated time within their job plan. 88% of those who undertook IAT would recommend IAT, but 60% reported difficulty transitioning from academic trainee to research active consultant.Barriers to research included; insufficient research culture and integration, with small teams working in a mixture of National Health Service (NHS) and non-NHS settings, leading to isolated, silo working. Even those who had undertaken IAT, felt a 'cliff edge' in opportunities after completing IAT. Filling service gaps was routinely prioritised over research activity. CONCLUSION: Palliative medicine consultants, including those who have completed academic training want to conduct research but overwhelming barriers limit activity. A palliative care-specific strategy that permeates different palliative care settings, promotes interspecialty collaboration and improves the current infrastructure for palliative care research to maximise gains from IAT and embed a research culture are suggested.

DECIDE (Diverse experiences of End-of-Life Care for Dementia) establishing consensus and capacity for future research through collaboration and co-production.

BACKGROUND: Dementia is a leading cause of death globally. However, end-of-life care is often poor or non-existent. People with dementia from ethnic minorities or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations. AIM: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity. METHOD: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research. RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services. CONCLUSION: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.

The prevalence of dementia in rural Tanzania: a cross-sectional community-based study.

OBJECTIVES: Despite the growing burden of dementia in low-income countries, there are few previous data on the prevalence of dementia in sub-Saharan Africa. The aim of this study was to estimate the prevalence of dementia in those who are 70 years and older in the rural Hai District of Tanzania. METHODS: This was a two-phase cross-sectional survey. Using census data, we screened individuals aged 70 years and older from six rural villages using the Community Screening Instrument for Dementia in Phase I. In Phase II, a stratified sample of those identified in Phase I were clinically assessed using the DSM-IV criteria. RESULTS: Of 1198 people who fulfilled the inclusion criteria, 184 screened positive for probable dementia, and 104 screened positive for possible dementia using the Community Screening Instrument for Dementia. During clinical assessment in Phase II, 78 cases of dementia were identified according to the DSM-IV criteria. The age-standardised prevalence of dementia was 6.4% (95% confidence interval: 4.9 to 7.9). Prevalence rates increased significantly with increasing age. CONCLUSIONS: The prevalence of dementia in this rural Tanzanian population is similar to that reported in high-income countries. Dementia is likely to become a significant health burden in this population as demographic transition continues. Further research on risk factors for dementia in sub-Saharan Africa is needed to inform policy makers and plan local health services.

Magnesium-induced ketamine toxicity.

A 62-year-old man with metastatic duodenal cancer was admitted to a hospice for a trial of ketamine to manage complex neuropathic abdominal pain. The patient was incrementally established on a dose of 150 mg orally four times day with no adverse effects. Following treatment of hypomagnesaemia intravenously, the patient experienced marked symptoms of ketamine toxicity, known as a 'K-hole' amongst recreational users, following the next dose of ketamine. Ketamine and magnesium are both antagonists of the N-methyl-D-aspartate receptor, which plays a part in central sensitisation to pain. There is some evidence that correction of hypomagnesaemia may improve analgesia and that there is synergism between ketamine and magnesium in analgesia, but this relationship is poorly understood. This is the first report suggesting that blood magnesium levels may affect the side effects of a stable dose of ketamine.

Personalised Assessment and Rapid Intervention in Frail Patients With Lung Cancer: The Impact of an Outpatient Occupational Therapy Service.

INTRODUCTION: Lung cancer and its treatments cause or accelerate frailty, detrimentally affecting function and quality of life. Occupational therapists (OTs) provide global assessments and interventions, but services are often available for inpatients. The impact of holistic assessment and early intervention in the outpatient setting is unknown. MATERIALS AND METHODS: A tertiary cancer center in North East England piloted a Lung Cancer Outpatient OT Service for patients with thoracic malignancy and a Clinical Frailty Scale Score (CFS) ≥ 5. Service effectiveness was evaluated through calculation of admission avoidance, hospital length-of-stay reduction, completion/impact of advance care planning and patient/family feedback. Demographics, frailty level, required interventions, and onward referrals were recorded. RESULTS: A total of 153 patients (median age of 71 (range 46-90) received OT assessment and intervention. 48% were in the lowest socioeconomic quintile. Median CFS score was 5 (mildly frail (range: 4-7)) at initial assessment. Total of 918 interventions were delivered (median: 5, IQR: 3-7, Range 0-22). 48% of patients engaged in future planning (national average: 10%-15% P < .0001) and 78.5% achieved preferred place of death (national average 30%). An estimated 37 hospital admissions were avoided. In admitted patients, average inpatient stay when known to the service was 6.5 days less than other frail lung cancer patients in our unit (95% CI 4-9.1 days P < .0001). Higher CFS was associated with poor survival (P < .05). CONCLUSION: Outpatient OT services can avoid and shorten hospital admissions through advance care planning, management of functional disruption, onward referral to other allied health professionals and palliative care. A comprehensive multidisciplinary outpatient service may benefit patients further and should be the focus of future research.

The prevalence of disability in older people in Hai, Tanzania.

BACKGROUND: the World Health Organization estimates that more than one billion of the world's population are disabled. Disability is associated with increasing age and poverty, yet there are few reliable data regarding disability among the elderly in low-income countries. The aim of this study was to accurately document the prevalence of disability in those aged 70 years and over in a community-based setting in sub-Saharan Africa. METHODS: we performed a community-based study of people aged 70 years and over in Hai, Tanzania. Participants underwent disability assessment using the culturally non-specific Barthel index (BI), and also clinical assessment for neurological disorders and memory problems. RESULTS: in 2,232 participants, the age-adjusted prevalence of severe disability (BI<15) was 3.7% (95% CI: 2.9-4.5) and the age-adjusted prevalence of moderate disability (BI: 15-18) was 6.2% [95% confidence interval (CI): 5.2-7.2]. Increasing age, female gender, memory problems and the presence of neurological disorders were all independent predictors of the presence of disability. CONCLUSION: in this study, the average disability level was lower than seen in most high-income countries. This may reflect increased mortality from disabling disease in low-income countries. Disability is likely to increase as the population of low-income countries ages and disease survival improves.

Clinical frailty and performance scale translation in palliative care: scoping review.

BACKGROUND: Frailty is associated with advancing age and increases the risk of adverse outcomes and death. Routine assessment of frailty is becoming more common in a number of healthcare settings, but not in palliative care, where performance scales (eg, the Australia-modified Karnofsky Performance Status Scale (AKPS)) are more commonly employed. A shared understanding of performance and frailty measures could aid interspecialty collaboration in both end-of-life care research and clinical practice. AIMS: To identify and synthesise evidence comparing measures of performance routinely collected in palliative care with the Clinical Frailty Scale (CFS), and create a conversion chart to support interspecialty communication. METHODS: A scoping literature review with comprehensive searches of PubMed, Web of Science, Ovid SP, the Cochrane Library and reference lists. Eligible articles compared the CFS with the AKPS, Palliative Performance Scale (PPS), Karnofsky Performance Scale or Eastern Cooperative Oncology Group Performance Status or compared these performance scales, in patients aged >18 in any setting. RESULTS: Searches retrieved 3124 articles. Two articles directly compared CFS to the PPS. Thirteen studies translated between different performance scores, facilitating subsequent conversion to CFS, specifically: AKPS/PPS 10/20=very severe frailty, AKPS/PPS 30=severe frailty, AKPS/PPS 40/50=moderate frailty, AKPS/PPS60=mild frailty. CONCLUSION: We present a tool for converting between the CFS and performance measures commonly used in palliative care. A small number of studies provided evidence for the direct translation between CFS and the PPS. Therefore, more primary evidence is needed from a wider range of population settings, and performance measures to support this conversion.

Palliative care inpatients favour research participation irrespective of prognosis, performance or socioeconomic status: multicentre cohort study.

OBJECTIVES: Palliative care needs to embrace research to guide service development and effective symptom management. Healthcare professionals often feel research is too burdensome for patients who have poor performance status or are near the end of life. Many studies exclude these groups from participating.We aimed to identify whether specialist palliative care inpatients would wish to take part in research and whether preference varies according to study design, demographics, diagnosis, performance status and prognosis. METHODS: 100 inpatients in two National Health Service specialist palliative care units and one independent hospice in the Northeast of England completed a short questionnaire about preferences for involvement in research. RESULTS: 92% of participants stated they were interested in being involved in research. This was mostly unaffected by age, diagnosis, prognosis, performance and socioeconomic status. Three-quarters were within the last 3 months of life. Simple questions or interviews were the preferred methodology, whereas only half of patients would want further investigations or additional medications and fewer still wanted to participate in online activities, lifestyle change or group activities. CONCLUSIONS: Palliative care inpatients welcome the opportunity to be involved in research and should not be excluded on the grounds of advanced disease, poor prognosis and low performance status.