Prevalence of Preferences for End-of-Life Place of Care and Death Among Patients With Cancer in Low- and Middle-Income Countries: A Systematic Review and Meta-Analysis.

PURPOSE: There is limited information on preferences for place of care and death among patients with cancer in low- and middle-income countries (LMICs). The aim was to report the prevalence and determinants of preferences for end-of-life place of care and death among patients with cancer in LMICs and identify concordance between the preferred and actual place of death. METHODS: Systematic review and meta-analysis guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses was conducted. Four electronic databases were searched to identify studies of any design that reported on the preferred and actual place of care and death of patients with cancer in LMICs. A random-effects meta-analysis estimated pooled prevalences, with 95% CI, with subgroup analyses for region and risk of bias. RESULTS: Thirteen studies were included. Of 3,837 patients with cancer, 62% (95% CI, 49 to 75) preferred to die at home; however, the prevalence of actual home death was 37% (95% CI, 13 to 60). Subgroup analyses found that preferences for home as place of death varied from 55% (95% CI, 41 to 69) for Asia to 64% (95% CI, 57 to 71) for South America and 72% (95% CI, 48 to 97) for Africa. The concordance between the preferred and actual place of death was 48% (95% CI, 41 to 55) for South Africa and 92% (95% CI, 88 to 95) for Malaysia. Factors associated with an increased likelihood of preferred home death included performance status and patients with breast cancer. CONCLUSION: There is very little literature from LMICs on the preferences for end-of-life place of care and death among patients with cancer. Rigorous research is needed to help understand how preferences of patients with cancer change during their journey through cancer.

Introducing the i-Rainbow©: An Evidence-Based, Parent-Friendly Care Pathway Designed for Critically Ill Infants in the NICU Setting.

PURPOSE: This study investigated the feasibility and effectiveness of a novel, evidence-based developmental care pathway to be used by health care providers and parents in the neonatal intensive care unit (NICU) setting. The i-Rainbow is based on current evidence and responds to individual infant health status. It is not based on infant age. METHODS: After development and implementation of the i-Rainbow, pre- and postimplementation nurse and parent survey data were collected and pre- and post-developmental care rates were compared. RESULTS: After i-Rainbow implementation, disagreement among providers on appropriate developmental care interventions significantly decreased, total minutes of daily developmental care and swaddled holding increased significantly, and parents reported that they would recommend the tool. CONCLUSION: The i-Rainbow is a unique, parent-friendly, infant-based tool that guides sensory interventions in the NICU by staging infants based on cardiorespiratory status and physiologic maturity, not age. The i-Rainbow improved the delivery of developmental care activities in our unit and was well received by parents and nurses. VIDEO ABSTRACT: Supplemental Digital Content available at: http://links.lww.com/PPT/A516.

Effect of exercise before and/or during taxane-containing chemotherapy treatment on chemotherapy-induced peripheral neuropathy symptoms in women with breast cancer: systematic review and meta-analysis.

PURPOSE: To systematically review and meta-analyse the efficacy of exercise interventions delivered before and/or during taxane-containing chemotherapy regimens on chemotherapy-induced peripheral neuropathy (CIPN), fatigue, and health-related quality of life (HR-QoL), in women with breast cancer. METHODS: Seven electronic databases were systematically searched for randomised controlled trials (RCTs) reporting on the effects of exercise interventions in women with breast cancer receiving taxane-containing chemotherapeutic treatment. Meta-analyses evaluated the effects of exercise on CIPN symptoms, fatigue, and HR-QoL. RESULTS: Ten trials involving exercise interventions ranging between 2 and 12 months were included. The combined results of four RCTs consisting of 171 participants showed a reduction in CIPN symptoms following exercise compared with usual care (standardised mean difference - 0.71, 95% CI - 1.24 to - 0.17, p = 0.012; moderate-quality evidence, I2 = 76.9%). Pooled results from six RCTs with 609 participants showed that exercise interventions before and/or during taxane-containing chemotherapy regimens improved HR-QoL (SMD 0.42, 95% CI 0.07 to 0.76, p = 0.03; moderate-quality evidence, I2 = 49.6%). There was no evidence of an effect of exercise on fatigue (- 0.39, 95% CI - 0.95 to 0.18, p = 0.15; very low-quality evidence, I2 = 90.1%). CONCLUSIONS: This systematic review found reduced levels of CIPN symptoms and an improvement in HR-QoL in women with breast cancer who exercised before and/or during taxane-based chemotherapy versus usual care controls. IMPLICATIONS FOR CANCER SURVIVORS: This evidence supports the role of exercise as an adjunctive treatment for attenuating the adverse effects of taxane-containing chemotherapy on CIPN symptoms and HR-QoL.

Interventions to enhance pre-pregnancy care for women with type 2 diabetes: A systematic review of the literature.

AIMS: The aim of the study was to examine the content and impact of interventions that have been used to increase the uptake of pre-pregnancy care for women with type 2 diabetes, and their impact on maternal and fetal outcomes. METHODS: A systematic search of multiple databases was conducted in November 2021, and updated July 2022, to identify studies assessing interventions to enhance pre-pregnancy care for women with type 2 diabetes. Over 10% of articles were screened by two reviewers at title and abstract phase, after which all selected full-text articles were screened by two reviewers. Quality assessment was conducted using the Critical Appraisal Skills Programme checklist for cohort studies. Meta-analysis was not possible due to study heterogeneity; therefore, narrative synthesis was conducted. RESULTS: Four eligible cohort studies were identified. The conclusions able to be drawn by this review were limited as women with type 2 diabetes (n = 800) were in the minority in all four studies (35%-40%) and none of the interventions were exclusively tailored for them. The uptake of pre-pregnancy care was lower in women with type 2 diabetes (8%-10%) compared with other participant groups in the studies. Pregnancy preparation indicators generally improved among all groups exposed to pre-pregnancy care, with varying impact on pregnancy outcomes. CONCLUSIONS: This review demonstrates that previous interventions have had a limited impact on pre-pregnancy care uptake in women with type 2 diabetes. Future studies should focus on tailored interventions for improving pre-pregnancy care for women with type 2 diabetes, particularly those from ethnic minorities and living in poorer communities.

Patient-Centered Discussions About Disease Progression, Symptom, and Treatment Burden in Chronic Obstructive Pulmonary Disease Could Facilitate the Integration of End-of-Life Discussions in the Disease Trajectory: Patient, Clinician, and Literature Perspectives: A Multimethod Approach.

Background: Patients with chronic obstructive pulmonary disease (COPD) seldom discuss preferences for future care/treatments with clinicians. The lack of discussions prevents the delivery of care grounded on patient preferences. Instead, treatments become increasingly burdensome as disease progresses and patients approach the end of life. Objective: Identify current and best practice in initiating and conducting conversations about future and palliative care, by integrating data from multiple sources. Design: Multiphasic study where the findings of a systematic literature review and qualitative interviews were combined and synthesized using a triangulation protocol. Setting/Participants: Thirty-three patients with COPD and 14 clinicians from multiple backgrounds were recruited in the United Kingdom. Results: Clinicians' and patients' poor understanding about palliative care and COPD, difficulties in timing and initiating discussions, and service rationing were the main factors for late discussions. Divergent perspectives between patients and clinicians about palliative care discussions often prevented their start. Instead, early and gradual patient-centered discussions on treatment choices, symptom, and treatment burden were recommended by patients, clinicians, and the literature. Earlier patient-centered discussions may reduce their emotional impact and enable patients to participate fully, while enabling clinicians to provide timely and accurate information on illness progression and appropriate self-management techniques. Conclusion: Current approaches toward palliative care discussions in COPD do not guarantee that patients' preferences are met. Early and gradual patient-centered discussions may enable patients to fully express their care preferences as they evolve over time, while minimizing the impact of symptom and treatment burden.

Seasonal turnover and insights into the overwintering biology of wireworms (Coleoptera: Elateridae) in the Canadian Prairies.

BACKGROUND: The long-lived terricolous larvae of click beetles, colloquially called wireworms, pose a significant threat to agriculture worldwide. Several economically important pest species have been documented in the Canadian Prairies, including Hypnoidus bicolor, Limonius californicus and Hypnoidus abbreviatus. However, most monitoring activities are performed in the early spring and there is evidence from other geographical regions of seasonal shifts in wireworm species composition and prevalence. Further, little is known about the overwintering physiology or behaviors of wireworms, which undoubtedly contribute to their population dynamics. RESULTS: We surveyed wireworm populations from four Manitoban fields six times throughout the 2020 and 2021 growing seasons. Both Hypnoidus species were active throughout the spring and summer; however, L. californicus did not become active until later in the spring. Chill-coma recovery assays indicated Hypnoidus species recovered quicker than L. californicus from cold acclimation. Vertical migration assays simulating progressively lower ambient temperatures experienced by overwintering larvae identified H. bicolor throughout the soil profile, with L. californicus preferentially found at cooler, shallower depths. We speculate that these differences in species distribution within the soil column are due to the higher levels of putative cryoprotectants (for example, trehalose, sorbitol, glucose, glycerol) in L. californicus, as identified by targeted liquid chromatography tandem mass spectrometry. CONCLUSION: Our findings of a stark seasonal turnover in wireworm species prevalence and composition in the Canadian Prairies should be incorporated into future integrated pest management and surveillance activities. This study also advances our understanding of wireworm overwintering biology, which should be factored into current management approaches. © 2022 His Majesty the King in Right of Canada. Pest Management Science © 2022 Society of Chemical Industry. Reproduced with the permission of the Minister of Agriculture and Agri-Food Canada.

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.

Evaluation of Standardized Bait Trapping Approaches and Climatic Factors That Influence Wireworm Catch in the Canadian Prairies.

Wireworms are significant pests of a variety of economically important crops grown in the Canadian Prairies. These soil-dwelling larvae of click beetles feed on and burrow into the accessible underground plant tissues, which can result in cosmetic injury, stunting, wilting, and plant death. Successful management of wireworms relies on accurate estimations of their abundance and activity in infested fields. Bait trapping is the most commonly used method for sampling wireworms and standardized approaches have been developed; however, little work has been done to optimize trapping efficacy in different geographical regions. In this study, we evaluated the effect of bait trapping duration, seed formulation, and the causal relationship with CO2 production and soil temperature on the wireworm catch in three fields located in Manitoba, Canada. As expected, wireworm catch increased with trapping duration and placing traps in ground for 8 d is adequate in most cases. Both barley and wheat were more effective baits than soybean; however, barley released more CO2 (i.e., an attractant for wireworms) and performed better at elevated soil temperatures. Overall, the results of this study will serve as valuable guidelines to improve current wireworm sampling methods, and can be integrated into strategies aimed at managing these important pests to crop production.

Clinician Perspectives on How to Hold Earlier Discussions About Palliative and End-of-Life Care With Chronic Obstructive Pulmonary Disease Patients: A Qualitative Study.

Chronic obstructive pulmonary disease is associated with progressive symptoms and increased treatment burden, especially at the end of life. However, most patients do not receive palliative care until late in their lives or discuss their end-of-life preferences with clinicians. This study explored clinicians' perspectives on the timing and nature of palliative care discussions. Qualitative interviews were conducted with 7 physicians and 7 nurses working in primary and secondary care settings. Data were analyzed using a thematic analysis. Participants advocated for early, gradual, and informed palliative and future care discussions, because these discussions were thought to be less traumatic and better accepted by patients. Despite this, patient- and clinician-related barriers severely affected clinicians' ability to start discussions at earlier stages. Participants felt many patients were not ready for these discussions and feared damaging hope if the subject was broached. Therefore, clinicians delayed discussions until patients approached the end of life. Stand-alone conversations about and near the end of life were described as current practice; however, clinicians believed these discussions reduced patients' hope and were potentially upsetting. Instead, individualized early, regular, and gradual discussions about immediate and long-term care plans were thought to be less negative and be better accepted.

The use of biomarkers and HPV genotyping to improve diagnostic accuracy in women with a transformation zone type 3.

BACKGROUND: Twenty percent of women referred to colposcopy have a type 3 transformation zone-where colposcopic assessment for high-grade dysplasia (CIN2+) is not possible. This study examines the effectiveness of HPV biomarkers and genotyping in combination with techniques that sample an endocervical TZ. METHODS: A prospective diagnostic accuracy study. Women booked for large-loop excision (LLETZ) with squamous dyskaryosis, high-risk HPV and a TZ3 were recruited. Immediately prior to LLETZ samples were collected for p16/Ki-67 dual-stained cytology, HPV genotyping and H&E, p16- and Ki-67-stained endocervical curettings. RESULTS: In women with low-grade screening (n = 64), 35.9% had CIN2+; dual-stained cytology had the greatest effect on the PPV of routine screening (76.1% vs 35.9%) and perfectly predicted the absence of CIN2+. In women with a high-grade screening result (n = 37); 75.6% had CIN2+ and dual-stained curettings improved the PPV (96.5 vs 75.6%). CONCLUSIONS: With high-grade screening and a TZ3, LLETZ appears safest as three quarters have CIN2+ . Women with low-grade screening and a TZ3 have a twofold increased risk of CIN2+ when compared to women where the TZ is visible. The use of dual-stained cytology may help identify those women who can be safely offered surveillance and those who require treatment.

Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK.

RATIONALE: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. METHODS: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. FINDINGS: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). IMPLICATIONS: The implications for end-of-life care and mortality research are discussed.

Successful systemic treatment outcomes of lichen planus: A single-center retrospective review.

Lichen planus (LP) affects up to 4% of adults and can cause significant distress and morbidity, especially to those with persistent disease. As many as 20% of patients with LP may exhibit widespread or recalcitrant disease necessitating systemic treatment options. We sought to evaluate the effectiveness of systemic treatments for severe and recalcitrant LP not responsive to topical corticosteroids or calcineurin inhibitors. Over a 10-year period, 374 patients with cutaneous and mucosal LP were evaluated at a major regional tertiary medical center; 94 qualified for inclusion in the study. In all, 26 (28%) patients achieved remission, 52 (55%) experienced stable disease control, and 16 (17%) failed all attempted treatments. Among medications most trialed, intramuscular triamcinolone (IM TAC), hydroxychloroquine, and methotrexate were most successful with 79%, 61%, and 42% respective response rates. In contrast, oral corticosteroids and dapsone were less frequently successful at rates of 24% and 20%. IM TAC represented the highest level of treatment success and was statistically significant compared to other systemic treatments (P < .01). Among adjuvant therapies, intralesional triamcinolone (IL TAC) demonstrated higher success (71%) than oral corticosteroids (29%). Based on this multi-year evaluation, we recommend that clinicians consider IM TAC as a first-line systemic option for severe or refractory LP, with hydroxychloroquine as the steroid-sparing treatment of choice. For patients requiring adjuvant therapy, IL TAC should be considered to hasten response and symptom relief. Patients with severe or widespread disease may benefit from earlier initiation of systemic therapy to prevent significant morbidity and impact on daily function.

Prognostic disclosure and quality of life in palliative care: a systematic review.

INTRODUCTION: Prognostic disclosure is an important component of communication in palliative care. Disclosing information on poor prognosis may affect quality of life (QoL) of palliative care patients. However, the effects of prognostic disclosure on QoL across different cultures and countries are unclear. OBJECTIVE: To review the effects of prognostic disclosure on QoL of palliative care patients. METHODS: A systematic review was conducted across seven databases (AMED, CINAHL plus, Cochrane Library, Medline (via the PubMed interface), Embase, Scopus and Web of Science). All primary studies, of any design, that explored the effects of prognostic disclosure on QoL of adult palliative care patients were eligible. RESULTS: A total of 1926 records were screened for eligibility. Twenty-five articles were included (11 cross-sectional, 10 cohort, 3 mixed methods and 1 qualitative study). Studies were conducted in 11 countries. Five studies reported the sources of prognostic disclosure, while 20 studies did not. Emotional QoL was the most reported domain among the studies. The effects of prognostic disclosure on emotional aspects, overall QoL and other domains, including symptoms, physical functions, role functions, social functions and cognitive functions, were inconsistent. CONCLUSIONS: The effects of prognostic disclosure on QoL across cultures and countries are inconsistent. Cultural differences are not sufficient to explain the effects. Future research is needed to explore the association between prognostic disclosure and QoL, and develop tools to support clinicians to share prognostic information in the most sensitive and supportive way.

Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK.

BACKGROUND: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. METHOD: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES-SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. RESULTS: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. CONCLUSIONS: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.

A nationally quasi-experimental study to assess the impact of partial organized breast and cervical cancer screening programme on participation and inequalities.

BACKGROUND: Organized breast and cervical cancer screening programme could only provide services at no cost for a fraction of socioeconomic-deprived women in China and other low-resource countries, however, little evidence exists for whether such a programme effectively affect the participation and inequalities at the population level. METHODS: We used individual-level data from a nationally cross-sectional survey in 2014-2015 for breast and cervical cancer screening participation. Data for intervention and comparison grouping were from 2009 to 2014 national breast and cervical cancer screening programme, and counties covered by the programme were divided into intervention group. We assessed the impact of the intervention on the participation rates and the magnitude of inequalities with two approaches: multivariable multilevel logistic regressions adjusting for individual- and region-level covariates; and a difference analysis combined with propensity score matching that estimated the average intervention effect. RESULTS: Of 69,875 included women aged 35-64 years, 21,620 were classified into the intervention group and 43,669 into the comparison group for breast cancer screening; and 31,794 into the intervention group, and 33,682 into the comparison group for cervical cancer screening. Participation rate was higher in intervention group than comparison group for breast cancer screening (25.3, 95% confidential interval [CI], 22.8-27.7%, vs 19.1, 17.4-20.7%), and cervical cancer screening (25.7, 23.8-27.7%, vs 21.5, 19.6-23.5%), respectively. Intervention significantly increased the likelihood of participation for both breast cancer and cervical cancer screening in overall women, rural women and urban women, whereas the effect was significantly higher in rural women than urban women. The average intervention effect on the participation rate was an increase of 7.5% (6.7-8.2%) for breast cancer screening, and 6.8% (6.1-7.5%) for cervical cancer screening, respectively. The inequalities were significantly decreased by 37-41% (P < 0.001) between rural and urban, however, were slightly decreased or even increased in terms of age, education status, and household income. CONCLUSIONS: Organized breast and cervical cancer screening programme targeting for a fraction of women could increase the participation rates at population level, however, it could not significantly affect socioeconomic-introduced inequalities. Further studies are need to conduct time-series analyses and strengthen the causal correlation.

The preferences of patients with chronic obstructive pulmonary disease are to discuss palliative care plans with familiar respiratory clinicians, but to delay conversations until their condition deteriorates: A study guided by interpretative phenomenological analysis.

BACKGROUND: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care. AIM: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians. DESIGN: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout. SETTING/PARTICIPANTS: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited. RESULTS: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences. CONCLUSION: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

BACKGROUND: Population-based data are presented on the nature of dying in intellectual disability services. METHODS: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. RESULTS: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. CONCLUSION: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review.

BACKGROUND: 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.

End-of-life care in intellectual disability: a retrospective cross-sectional study.

BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown. AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population. DESIGN: Nationwide population-based postbereavement survey. PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths. RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population. CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.