Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England.

BACKGROUND: Recently, there has been an emphasis on providing good-quality end-of-life care; however, little is known about it and its determinants for patients living at home. AIM: To determine what characterises good-quality end-of-life care for patients living at home. DESIGN AND SETTING: An observational study using 5-year data from the National Survey of Bereaved People (Views of Informal Carers - Evaluation of Services [VOICES]) in England. METHOD: Analysis was based on data for 63 598 decedents, who were cared for at home in the last 3 months of life. Data were drawn from 110 311 completed mortality follow-back surveys of a stratified sample of 246 763 deaths registered in England between 2011 and 2015. Logistic regression analyses were used to identify independent variables associated with overall quality of end-of-life care and other indicators of end-of-life care quality. RESULTS: Patients who received good continuity of primary care (adjusted odds ratio [AOR] 2.03; 95% confidence interval [CI] = 2.01 to 2.06) and palliative care support (AOR 1.86; 95% CI = 1.84 to 1.89) experienced better overall quality of end-of-life care than those who did not, as perceived by relatives. Decedents who died from cancer (AOR 1.05; 95% CI = 1.03 to 1.06) or outside of hospital were more likely to receive good end-of-life care, as perceived by relatives. Being older, female (AOR 1.16; 95% CI = 1.15 to 1.17), from areas with least socioeconomic deprivation, and White (AOR 1.09; 95% CI = 1.06 to 1.12) were associated with better overall end-of-life care, as perceived by relatives. CONCLUSION: Better quality of end-of-life care was associated with good continuity of primary care, specialist palliative care support, and death outside of hospital. Disparities still exist for those from minority ethnic groups and those living in areas of socioeconomic deprivation. Future commissioning and initiatives must consider these variables to provide a more-equitable service.

Quality of end-of-life care with non-malignant liver disease: Analysis of the VOICES National Survey of Bereaved People.

BACKGROUND AND AIMS: Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease. METHODS: A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015. RESULTS: More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p < .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p < .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p < .001). For this group, poorer care was associated with younger (65-74 vs. 18-64 years, OR [odds ratio] 1.39, p = .01), more socially deprived decedents (OR .78, p = .02), and better care with greater social support (OR 1.82, p < .001) and community specialist palliative care involvement (OR 1.80, p < .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p = .92) or place of death (hospital vs. non-hospital, p = .476). CONCLUSIONS: End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.

Identifying barriers and facilitators of translating research evidence into clinical practice: A systematic review of reviews.

Translating research into clinical practice is a global priority because of its potential impact on health services delivery and outcomes. Despite the ever-increasing depth and breadth of health research, most areas across the globe seem to be slow to translate relevant research evidence into clinical practice. Thus, this review sought to synthesise existing literature to elucidate the barriers and facilitators to the translation of health research into clinical practice. A systematic review of reviews approach was utilised. Review studies were identified across PubMed, Scopus, Embase, CINAHL and Web of Science databases, from their inception to 15 March 2021. Searching was updated on 30 March 2022. All retrieved articles were screened by two authors; reviews meeting the inclusion criteria were retained. Based on the review type, two validated tools were employed to ascertain their quality: A Measurement Tool to Assess Systematic Reviews-2 and International Narrative Systematic assessment. The framework synthesis method was adopted to guide the analysis and narrative synthesis of data from selected articles. Ten reviews met the inclusion criteria. The study revealed that the translation of new evidence was limited predominantly by individual-level issues and less frequently by organisational factors. Inadequate knowledge and skills of individuals to conduct, organise, utilise and appraise research literature were the primary individual-level barriers. Limited access to research evidence and lack of equipment were the key organisational challenges. To circumvent these barriers, it is critical to establish collaborations and partnerships between policy makers and health professionals at all levels and stages of the research process. The study concluded that recognising barriers and facilitators could help set key priorities that aid in translating and integrating research evidence into practice. Effective stakeholder collaboration and co-operation should improve the translation of research findings into clinical practice.

Conceptualising effective symptom management in palliative care: a novel model derived from qualitative data.

BACKGROUND: Pain, breathlessness and fatigue are some of the most challenging symptoms to manage in patients with advanced disease. Specialist palliative care leads to better symptom management, but factors contributing to successful symptom management in this context have not been explored. Our aim was to understand what facilitates effective symptom management in specialist palliative care within UK hospices and investigate what barriers are experienced. METHODS: This was a grounded theory study using qualitative semi-structured focus groups and interviews. Participants were recruited from multidisciplinary specialist palliative care teams (doctors, nurses, healthcare assistants, physiotherapists, occupational therapists, complementary therapists, social workers and chaplains) working in inpatient, outpatient and community services provided by five hospices in the United Kingdom. RESULTS: We present a novel qualitative data-derived model of effective symptom management in specialist palliative care. We describe a co-ordinated, multi-faceted, sequential approach involving a process of engagement, partnership, decision-making, and delivery. Interventions to manage symptoms are less effective in psychologically distressed patients. Our data highlights that families of patients have a key role in determining effectiveness of symptom management interventions A holistic approach by a co-ordinated, multi-disciplinary team, including support to recognise and minimise psychological distress might facilitate more effective symptom management. Barriers to symptom management include team discordance and lack of understanding about symptom management by patient and families. CONCLUSIONS: Shared decision-making between patients and professionals and co-ordination of care by a multi-disciplinary team are key components of effective symptom management. Actions to address psychological distress and evaluate the understanding and expectations of patients and their families would enable more effective symptom management. A more effective multi-disciplinary approach would be facilitated by discussion within teams about role competencies and boundaries.

The Symptom Burden and Quality of Life in Cancer Patients in the Gaza Strip, Palestine: A Cross-Sectional Study.

OBJECTIVES: Cancer is the second leading cause of death in the Gaza Strip, Palestine, but there is an absence of evidence systematically assessing symptom burden and quality of life (QoL) using validated tools. Our objective was to assess associations between socio-demographic and disease-related characteristics, symptom burden and QoL in a sample of cancer patients accessing outpatient services in the Gaza Strip. DESIGN: A cross-sectional, descriptive survey using interviews and medical record review involving patients with cancer accessing oncology outpatient services at Al Rantisi Hospital and European Gaza Hospital (EGH) in the Gaza Strip was employed. Socio-demographic and disease-related data, the Lebanese version of the Memorial Symptom Assessment Scale (MSAS-Leb), and the Arabic version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30) were collected. Multiple linear regression was used to judge the relative influence of determinants of QoL. RESULTS: Of 414 cancer patients approached, 385 patients consented to participation. The majority were women (64.7%) with a mean age of 52 years (SD = 16.7). Common cancer diagnoses were breast (32.2%), haematological (17.9%) and colorectal (9.1%). The median number of symptoms was 10 (IQR 1.5-18.5). Mean overall QoL was 70.5 (SD 19.9) with common physical and psychological symptoms identified. A higher burden of symptoms was associated with marital status, education and income. Limited access to both opioids and psychological support were reported. CONCLUSIONS: A high symptom burden was identified in outpatients with cancer. Increasing provision and access to supportive care for physical and psychological symptoms should be prioritised alongside exploring routine assessment of symptom burden and QoL.

Duration of palliative care before death in international routine practice: a systematic review and meta-analysis.

BACKGROUND: Early provision of palliative care, at least 3-4 months before death, can improve patient quality of life and reduce burdensome treatments and financial costs. However, there is wide variation in the duration of palliative care received before death reported across the research literature. This study aims to determine the duration of time from initiation of palliative care to death for adults receiving palliative care across the international literature. METHODS: We conducted a systematic review and meta-analysis that was registered with PROSPERO (CRD42018094718). Six databases were searched for articles published between Jan 1, 2013, and Dec 31, 2018: MEDLINE, Embase, CINAHL, Global Health, Web of Science and The Cochrane Library, as well undertaking citation list searches. Following PRISMA guidelines, articles were screened using inclusion (any study design reporting duration from initiation to death in adults palliative care services) and exclusion (paediatric/non-English language studies, trials influencing the timing of palliative care) criteria. Quality appraisal was completed using Hawker's criteria and the main outcome was the duration of palliative care (median/mean days from initiation to death). RESULTS: One hundred sixty-nine studies from 23 countries were included, involving 11,996,479 patients. Prior to death, the median duration from initiation of palliative care to death was 18.9 days (IQR 0.1), weighted by the number of participants. Significant differences between duration were found by disease type (15 days for cancer vs 6 days for non-cancer conditions), service type (19 days for specialist palliative care unit, 20 days for community/home care, and 6 days for general hospital ward) and development index of countries (18.91 days for very high development vs 34 days for all other levels of development). Forty-three per cent of studies were rated as 'good' quality. Limitations include a preponderance of data from high-income countries, with unclear implications for low- and middle-income countries. CONCLUSIONS: Duration of palliative care is much shorter than the 3-4 months of input by a multidisciplinary team necessary in order for the full benefits of palliative care to be realised. Furthermore, the findings highlight inequity in access across patient, service and country characteristics. We welcome more consistent terminology and methodology in the assessment of duration of palliative care from all countries, alongside increased reporting from less-developed settings, to inform benchmarking, service evaluation and quality improvement.

Identification of patients with potential palliative care needs: A systematic review of screening tools in primary care.

BACKGROUND: Despite increasing evidence of the benefits of early access to palliative care, many patients do not receive palliative care in a timely manner. A systematic approach in primary care can facilitate earlier identification of patients with potential palliative care needs and prompt further assessment. AIM: To identify existing screening tools for identification of patients with advanced progressive diseases who are likely to have palliative care needs in primary healthcare and evaluate their accuracy. DESIGN: Systematic review (PROSPERO registration number CRD42019111568). DATA SOURCES: Cochrane, MEDLINE, Embase and CINAHL were searched from inception to March 2019. RESULTS: From 4,127 unique articles screened, 25 reported the use or development of 10 screening tools. Most tools use prediction of death and/or deterioration as a proxy for the identification of people with potential palliative care needs. The tools are based on a wide range of general and disease-specific indicators. The accuracy of five tools was assessed in eight studies; these tools differed significantly in their ability to identify patients with potential palliative care needs with sensitivity ranging from 3% to 94% and specificity ranging from 26% to 99%. CONCLUSION: The ability of current screening tools to identify patients with advanced progressive diseases who are likely to have palliative care needs in primary care is limited. Further research is needed to identify standardised screening processes that are based not only on predicting mortality and deterioration but also on anticipating the palliative care needs and predicting the rate and course of functional decline. This would prompt a comprehensive assessment to identify and meet their needs on time.

Regular dosing compared with as-needed dosing of opioids for management of chronic cancer pain: systematic review and meta-analysis.

Opioids are the recommended form of analgesia for patients with persistent cancer pain, and regular dosing "by the clock" is advocated in many international guidelines on cancer pain management. The development of sustained-release opioid preparations has made regular dosing easier for patients. However, patients report that the intensity and impact of their cancer pain varies considerably day to day, and many try to find a trade-off between acceptable pain control and impact of cognitive (and other) adverse effects on daily activities. In acute care settings, (eg, postoperative) as-needed dosing and other opioid-sparing approaches have resulted in better patient outcomes compared with regular dosing. The aim of this study was to determine whether regular dosing of opioids was superior to as-needed dosing for persistent cancer pain. We systematically searched for randomised controlled trials that directly compared pain outcomes from regular dosing of opioids with as-needed dosing in adult cancer patients. We identified 4347 records, 25 randomised controlled trials meet the inclusion criteria, 9 were included in the review, and 7 of these included in meta-analysis. We found no clear evidence demonstrating superiority of regular dosing of opioids compared with as-needed dosing in persistent cancer pain, and regular dosing was associated with significantly higher total opioid doses. There was, however, a paucity of trials directly answering this question, and low-quality evidence limits the conclusions that can be drawn. It is clear that further high-quality clinical trials are needed to answer this question and to guide clinical practice.

Treatment-independent live birth after in-vitro fertilisation: a retrospective cohort study of 2,133 women.

STUDY QUESTION: What is the chance of a treatment-independent live birth following IVF (including ICSI) treatment? SUMMARY ANSWER: Over 5 years of follow-up, the treatment-independent live birth rate was 17% in unsuccessfully treated women and 15% in those who had a live birth after IVF. WHAT IS KNOWN ALREADY: A limited number of studies have investigated the chance of treatment-independent conception following completion of IVF, but most of them have been based on surveys with poor response rates and limited sample sizes. STUDY DESIGN, SIZE, DURATION: This is a population-based, retrospective cohort study of 2133 women who received IVF treatment between 1998 and 2011 at a single regional IVF Unit and were followed for a minimum of 1 year and maximum of 15 years after their last IVF or ICSI treatment cycle. PARTICIPANTS/MATERIALS, SETTING, METHODS: This study included all women, residing in the north-east of the UK, who attended the Aberdeen Fertility Clinic and received IVF treatment between 1998 and 2011. Clinical and diagnostic information of all women was linked with treatment and pregnancy outcome data. A total of 2133 women were divided into two groups: (i) those who achieved a live birth following successful IVF or ICSI treatment (n = 1060) and (ii) those in whom treatment was unsuccessful i.e. resulted in either no pregnancy or pregnancy loss (n = 1073). The two groups were followed from the date of the last embryo transfer until the first treatment-independent live birth or 31 December 2012, whichever came first. The primary outcome was the treatment-independent live birth rate at 1, 2.5, 5 and 10 years of follow-up. Cox regression was used to determine factors associated with treatment-independent live birth in each group. MAIN RESULTS AND THE ROLE OF CHANCE: Within 5 years of follow-up, the treatment-independent live birth rate was 17% (95% CI, 15-19%) among women whose IVF or ICSI treatment was unsuccessful and 15% (95% CI, 12-17%) among women whose treatment resulted in live birth. In both groups, shorter duration of infertility, younger female age and IVF as compared to ICSI were associated with a higher chance of achieving treatment-independent live birth. Among unsuccessfully treated women, the chance of post-IVF live birth was reduced in those with tubal factor infertility. Three or more previous IVF or ICSI embryo transfers were associated with a lower chance of treatment-independent live birth among successfully treated women. LIMITATIONS, REASONS FOR CAUTION: The study was conducted in a single fertility centre, which could compromise the generalizability of the findings. Moreover, data were unavailable on the women's use of contraception or active attempts to get pregnant, both of which could influence treatment-independent live birth rates. WIDER IMPLICATIONS OF THE FINDINGS: This study provides a better understanding of the long-term prognosis for treatment-independent live birth after completion of IVF or ICSI treatment. The results will inform women of their chances of a treatment-independent live birth following failed or successful treatment and the factors that are associated with it. STUDY FUNDING/COMPETING INTEREST(S): This work was funded by a Chief Scientist Office Postdoctoral Training Fellowship in Health Services Research and Health of the Public Research (Ref PDF/12/06). The views expressed here are those of the authors and not necessarily those of the Chief Scientist Office. The authors have no competing interests. TRIAL REGISTRATION NUMBER: Not applicable.

Specialist palliative care support is associated with improved pain relief at home during the last 3 months of life in patients with advanced disease: analysis of 5-year data from the national survey of bereaved people (VOICES).

BACKGROUND: Studies have shown that more than half of patients with advanced progressive diseases approaching the end-of-life report pain and that pain relief for these patients is poorest at home compared to other care settings such as acute care facilities and hospice. Although home is the most common preferred place of death, the majority of deaths occur outside the home. Specialist palliative care is associated with improved quality of life, but systematic reviews of RCTs have failed to show a consistent association with better pain relief. The aim of this study was to examine the factors associated with good pain relief at home in the last 3 months of life for people with advanced progressive disease. METHODS: Data were obtained from the National Bereavement Survey in England, a cross-sectional post-bereavement survey of a stratified random sample of 246,763 deaths which were registered in England from 2011 to 2015. From 110,311 completed surveys (45% response rate), the analysis was based on individual-level data from 43,509 decedents who were cared for at home before death. RESULTS: Decedents who experienced good pain relief at home before death were significantly more likely to have received specialist palliative care (adjusted OR = 2.67; 95% CI, 2.62 to 2.72) and to have a recorded preferred place of death (adjusted OR = 1.87; 95% CI, 1.84 to 1.90) compared to those who did not. Good pain relief was more likely to be reported by a spouse or partner of the decedents compared to reports from their son or daughter (adjusted OR = 1.50, 95% CI, 1.47 to 1.53). CONCLUSION: This study indicates that patients at home who are approaching the end-of-life experience substantially better pain relief if they receive specialist palliative care and their preferred place of death is recorded regardless of their disease aetiology.