Adult Palliative Care Services Research Articles

Comparing the Need and Development of Pediatric Palliative Care in Mexico: A Geographical Analysis

ContextThe Global Atlas of Palliative Care (GAPC) ranked Mexico's palliative care services at a preliminary integration stage into mainstream healthcare services. However, this data does not reflect pediatric palliative care (PPC) development. ObjectivesTo analyze the current need and level of development of PPC within Mexico. MethodsPPC need was estimated using causes of death associated with serious health-related suffering from national mortality data from the General Directorate of Health Information. The level of development was measured through six indicators involving access to PPC services and opioids, then classified using the GAPC development categories adapted to regional territories based on available data. ResultsIn 2021, 37,444 children died in Mexico. Of those, 10,677 (28.29%) died from conditions with serious health-related suffering, averaging a need for PPC of 25/100,000 children. Out of Mexico's 32 states, two (6.2%) had no PPC activity (category 1), twenty (62.6%) were in a capacity-building phase (category 2), eight (25%) had isolated PPC provision (category 3a), while two (6.2%) had generalized PPC provision (category 3b). No state had early (category 4a) or advanced PPC integration (category 4b). Overall, Mexico was classified as category 2. ConclusionsPPC services are distributed unevenly across the country, leading to inequitable access to care and an inability to meet the needs of patients and families. There is a disparity between the level of development of adult palliative care services and the underdevelopment of PPC in Mexico. This information can help stakeholders guide the development of PPC where it is needed most.

Evaluating the transition of adolescents and young adults with palliative care needs from pediatric to adult care

BackgroundThe transition from pediatric to adult healthcare poses significant challenges for adolescents and young adults (AYA), especially those with chronic conditions, yet most children receive inadequate transition preparation. Research on the transition for patients receiving palliative care services is particularly limited. We sought to address this gap in the literature. MethodsYoung adults aged 18 to 35 years who transitioned from the pediatric setting and received adult palliative care services at an urban academic medical center between the dates of February 1st, 2020 and July 1st, 2022 were identified retrospectively via electronic medical record. Chart review was used to investigate outcomes of interest, including use of pediatric palliative care services and timing of care conversations. ResultsOnly 23 % of patients interfaced with pediatric palliative care, despite all having childhood diagnoses. Pediatric palliative care exposure was associated with a significantly earlier median age of first adult palliative care encounter (19.63 versus 25.06, p = <0.001). Goals of care discussions, code status conversations, and healthcare proxy documentation occurred earlier if pediatric palliative care was involved (18.9 years versus 25.7 years, p < 0.001; 20.9 years versus 30.0 years, p < 0.001; 20.7 versus 28.9, p < 0.001). ConclusionsPediatric palliative care services were underutilized in AYA patients, but when used, were associated with earlier adult palliative care encounters, goals of care discussions, code status decisions, and health care proxy identification.

A model of intended and ideal prescribing and medication use in symptom control in palliative care: an international scoping review

Abstract Introduction UK health policy documents are committed to improving personalised palliative care for people of all ages, prioritising access to coordinated care and health inequity. The UK Health and Care Act 2022 has stated it is a statutory requirement for Integrated Care Boards to commission palliative and end of life care services. Palliative care focuses on improving the quality of life of patients and families who are facing problems associated with life-limiting illness, and often involves medication for symptom control. Medication has been reported in 19% of NHS serious incident reports involving palliative patients, mostly occurring in patient homes, with half when specialists did not provide care.1 Aim To document a model of existing evidence illustrating intended processes when palliative medications are prescribed for symptom control and used by adults at home, in hospital and hospice settings. Methods We performed a scoping review using JBI methodology.2 Population (P): (i) adults in the last phase of life, (ii) informal carers supporting an adult as described above, (iii) healthcare professionals providing palliative care for symptom control. Concept (C): multistep processes for medication use for symptom control in palliative care. Context (C): care settings where palliative care may be anticipated, planned or happen. A systematic search were undertaken in Medline, CINAHL, Embase, plus Google scholar and Google images. There were no date limits; searches were confined to English language. Published and unpublished literature meeting the PCC framework were included. Screening and extraction of data were performed by two independent reviewers (SAF and SY). Studies were categorised inductively and results collated descriptively. Ethical approval was obtained from the NHS HRA and HCRW (ref: 21/LO/0459). Results 19,753 titles and abstracts were screened; 929 underwent full text review; 308 peer-reviewed articles and grey literature documents were retained to build the intended model. The majority of these papers (212; 69%) provided simple process steps involving expertise/judgement, supply chain/access, administration, prescribing/deprescribing, rationalisation, repurposing. The remaining 96 papers warranted richer thematic analysis. Most studies took place in the UK, Australia or USA in home/community settings. Analysis illuminated detail about ‘hidden work’ (participants’ actions in medication management), ‘hot spots’ (problematic areas e.g. out-of-hours care and the reliance on carers) and ‘cold spots’ (areas with less attention such as whose responsibility for keeping carers informed of changes and what is adequate support for safe medicines use at home). Discussion/Conclusion There is a growing interest in how best to work together across boundaries to enable getting the right medication to the right person at the right time and place. This scoping review documents the existing evidence of intended processes and a model of ideal prescribing and medication use in symptom control in palliative care. This study is limited to adult palliative care services only. A strength of the study is the use of JBI methodology. Using ethnographic methods and the conceptual tools of Activity Theory, we will refine this intended model with a study of what happens in practice3 to build a theoretically-informed, empirically-evidenced model of medication management across palliative care contexts.

Comparison of home-based palliative care delivered by community health workers versus usual care: research protocol for a pilot randomized controlled trial

BackgroundResearch studies demonstrate that palliative care can improve patient outcomes such as quality of life, symptom burden and patient satisfaction with care (Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):CD00776) (World Health Organization. Palliative Care. Published 2020.). While 76% of patients who need palliative care live in limited-resource countries, access to high quality palliative services in these countries is minimal (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care (2nd ed). 2020.). In 2014 the Worldwide Hospice Palliative Care Alliance, with strong endorsement by the WHO, released the Palliative Care Toolkit to provide a training and implementation toolkit for empowering community members to deliver palliative care in resource poor settings (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland 2014.). They encouraged researchers and public health practitioners to conduct rigorous evaluation of the toolkit in diverse settings and contexts. To address this need, we will conduct a pilot randomized controlled trial (RCT) to examine implementation and explore potential effect of an intervention based upon the Palliative Care Toolkit, as adapted and used by community health workers (CHWs) working with a cancer center in Kolkata, India to deliver home-based palliative care for rural patients.MethodsUtilizing a randomized controlled trial design, intervention patients (n = 45) receive home-based palliative services (Pal-Care) delivered by community health workers (CHWs), with comparison against a control group of patients (n = 45) who receive usual cancer-center-based palliative services. Primary outcome measures include evaluation of CHW training outcomes, roles and responsibilities of the CHWS and how they assist patients, trial recruitment, stakeholder perceptions of the intervention, and fidelity to study protocol. Secondary outcomes measure patient self-report of health-related quality of life, symptom burden, palliative needs and patient care experience, outcomes The RE-AIM framework guides our evaluation plan to measure the reach, effectiveness, adoption, implementation and maintenance of the Pal-Care intervention (Gaglio B, et al. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013;103(6):e38?46.). Data will be analyzed in SAS. All measures will be evaluated overall and by patient age, gender and cancer type and by CHW caseload.DiscussionPal-Care is a RCT funded by the NCI to explore utilization of CHWs to deliver a home-based palliative care intervention built upon the WHO Palliative Care toolkit (PCT), as compared to a usual care control group. The long-term goal of this research is to develop an effective and sustainable model for delivering home-based palliative care for cancer patients in underserved areas.Trial registration (TRN)ClinicalTrials.gov ID# NCT04972630.

Psychological service provision in Australian Palliative Care Services.

Psychological distress is common among palliative care patients. Despite this, little is known about the availability of psychological services to support palliative care patients within Australia. This study aimed to determine the level of psychological support services available within Australian Palliative Care Services. The study was based on a similar study in Australia by Crawford in 1999, allowing differences over time to be examined. A 12-item online survey was distributed to adult Palliative Care Services throughout Australia from November 2021 to January 2022. Quantitative and qualitative analysis of responses was conducted, with comparisons made with the 1999 study using a 2-proportions z-test. Social workers were the most available professionals delivering psychological care (prevalence of 94.1%), followed by spiritual care workers (62.5%), creative therapists (43.8%), counselors (36.4%), psychiatrists (31.3%), complementary therapists (28.1%), and psychologists (25.0%). Nearly 60% of services had no access to a psychiatrist or a psychologist. The proportion of Palliative Care Services that had access to a psychiatrist, psychologist, or counselor was significantly less in 2021/22 compared to 1999, with differences of 29.4% (p=0.002), 23.4% (p=0.015), and 26.1% (p=0.006), respectively. Lack of access to psychiatrists, psychologists, and counselors in Australian Palliative Care Services remains a significant issue and has become more prevalent since 1999. Ongoing advocacy and increased government funding to enable psychological health professionals to be readily employed in Palliative Care Services is vital.

Possible age-related differences in healthcare professionals’ perspectives on younger and older patients’ autonomy and decision-making in the context of sedation in specialised palliative care: exploratory secondary qualitative content and linguistic conversation analysis of interviews with healthcare professionals

BackgroundChronic illnesses and multi-morbidity can threaten competence and independence, particularly in old age. Autonomy becomes increasingly important in the context of sedation, as in this case medication leads to (further) changes of consciousness. The study aimed to identify possible age-related differences in the perspectives of healthcare professionals on patients’ autonomy, in the context of sedation in specialised palliative care.MethodSecondary analysis of interviews with healthcare professionals, analysed by qualitative content and linguistic conversation analysis. The interviews analysed span 51 healthcare professionals in specialised palliative care across 17 centres (adult inpatient and specialist palliative home care services) in Germany.ResultsThe study shows that the perspectives of healthcare professionals on patients’ autonomy differs according to the age of the patient in the context of sedation in specialised palliative care. The different perspectives may lead to different ways of treating the patients, for example a greater space of autonomy and decision-making for younger patients.ConclusionIn particular, measures that may restrict consciousness (e.g. sedation) and thus influence patients’ ability to fully exercise their autonomy and fully participate in decision-making require special attention by healthcare professionals with respect to possible influences on treatment, such as different perceptions by healthcare professionals based on the patient’s age or age-related stereotypes.Trial registrationThe study “SedPall” is registered in the German Clinical Trials Register (ID: DRKS00015047).

Protocol for an exploratory, longitudinal single case study of a novel palliative care rehabilitative service.

Background: Early access to rehabilitation can improve quality of life for those with life-limiting illnesses and is highlighted as a core component of the Adult Palliative Care Services Model of Care for Ireland. Despite this, palliative rehabilitation remains under-utilised and under-developed. In 2020, the Sláintecare Integration Fund provided opportunity to pilot a novel rehabilitative palliative care service, "Palliat Rehab". This protocol proposes a case study, which aims to advance understanding of the form, content, and delivery of the pilot service. Methods: A prospective, longitudinal, mixed-methods, case study design will be used to describe the service and to explore the experiences of patients, informal carers and clinicians. Additionally, data collection instruments will be tested and the utility of outcome measures will be examined. Data will be collected from documentary, survey, and interview sources. Quantitative data will be analysed using descriptive statistics, including chi-square tests for categorical variables, Mann-Whitney U tests for ordinal data, and t-tests/ ANOVA for continuous data. Qualitative data will be analysed using thematic analysis. Conclusions: New pathways are required to advance service provision to ensure that patients receive the 'right care, in the right place, at the right time'. This protocol outlines a case study which will aim to develop current understanding of the implementation and delivery of a novel rehabilitative palliative care service in Ireland and will consider its potential contribution to the achievement of Sláintecare goals. Investigating the service within its environmental context will lead to a better understanding of 'how' and 'why' things happen. Findings will be used to inform efforts to further develop and tailor the intervention.

Protocol for an exploratory, longitudinal single case study of a novel palliative care rehabilitative service

Background: Early access to rehabilitation can improve quality of life for those with life-limiting illnesses and is highlighted as a core component of the Adult Palliative Care Services Model of Care for Ireland. Despite this, palliative rehabilitation remains under-utilised and under-developed. In 2020, the Sláintecare Integration Fund provided opportunity to pilot a novel rehabilitative palliative care service, “Palliat Rehab”. This protocol proposes a case study, which aims to advance understanding of the form, content, and delivery of the pilot service. Methods: A prospective, longitudinal, mixed-methods, case study design will be used to describe the service and to explore the experiences of patients, informal carers and clinicians. Additionally, data collection instruments will be tested and the utility of outcome measures will be examined. Data will be collected from documentary, survey, and interview sources. Quantitative data will be analysed using descriptive statistics, including chi-square tests for categorical variables, Mann-Whitney U tests for ordinal data, and t-tests/ ANOVA for continuous data. Qualitative data will be analysed using thematic analysis. Conclusions: New pathways are required to advance service provision to ensure that patients receive the ‘right care, in the right place, at the right time’. This protocol outlines a case study which will aim to develop current understanding of the implementation and delivery of a novel rehabilitative palliative care service in Ireland and will consider its potential contribution to the achievement of Sláintecare goals. Investigating the service within its environmental context will lead to a better understanding of ‘how’ and ‘why’ things happen. Findings will be used to inform efforts to further develop and tailor the intervention.

Protocol for an exploratory, longitudinal single case study of a novel palliative care rehabilitative service.

Background: Early access to rehabilitation can improve quality of life for those with life-limiting illnesses and is highlighted as a core component of the Adult Palliative Care Services Model of Care for Ireland. Despite this, palliative rehabilitation remains under-utilised and under-developed. In 2020, the Sláintecare Integration Fund provided opportunity to pilot a novel rehabilitative palliative care service, "Palliat Rehab". This protocol proposes a case study, which aims to advance understanding of the form, content, and delivery of the pilot service. Methods: A prospective, longitudinal, mixed-methods, case study design will be used to describe the service and to explore the experiences of patients, informal carers and clinicians. Additionally, data collection instruments will be tested and the utility of outcome measures will be examined. Data will be collected from documentary, survey, and interview sources. Quantitative data will be analysed using descriptive statistics, including chi-square tests for categorical variables, Mann-Whitney U tests for ordinal data, and t-tests/ ANOVA for continuous data. Qualitative data will be analysed using thematic analysis. Conclusions: New pathways are required to advance service provision to ensure that patients receive the 'right care, in the right place, at the right time'. The development of ''Palliat Rehab'' offers opportunity to study an innovative service and consider its potential contribution to the achievement of Sláintecare goals. Investigating the service within its environmental context will lead to a better understanding of 'how' and 'why' things happen. Findings will be of value in assessing whether there is evidence that supports the service, and will be used to inform efforts to further develop and tailor the intervention.

Predictors of community death in an Australian specialist palliative care service

Background In Australia, an aging population has intensified demand on residential aged care facilities, hospitals and palliative care services for end-of-life care. The likelihood of home death for cancer patients in South Australia has remained below 14%. Objectives: This research aims to investigate predictors for community death and preferred place of death of patients registered with an Australian community adult specialist palliative care service (SPCS). Methods: A consecutive cohort retrospective medical records and electronic database review of all referred patients who died between 1st January and 30th June 2017 was undertaken. Results: There were 456 registered patients who died in this period. The 62 rural patients and 32 patients with missing medical records were excluded. Of the remaining 362 patients, 62 did not have community face-to-face contact and were excluded. Of the 300 patients eligible, there were 143 females and mean age was 71 years. This study revealed an overall community death rate (private home and residential aged care facility) of 31.3% compared with private home death rate of 17%. There were two important predictors of community death. Firstly, family/caregiver preferred place of death had a far greater impact on likelihood of community death than patient preferred place of death. Secondly, the intensity of input from the whole palliative care team, in particular, community face-to-face visits and more specifically by nurses, were major predictors. Conclusion: Investing in community-based SPCSs may not only better support patient and family/caregiver preferences, and increase rates of community death but also reduces hospitalisation costs.

Community health workers in palliative care provision in low-income and middle-income countries: a systematic scoping review of the literature

BackgroundCommunity health workers (CHWs) are currently deployed in improving access to palliative care in a limited number of low-income or middle-income countries (LMICs). This review therefore aimed to document evidence...

Developing Evidence-Based Clinical Guidelines in Palliative Care for Home Care Setting in India.

Background:Clinical guidelines can improve care and reduce variations in practice. With the growth of The Jimmy S Bilimoria Foundation's PALCARE, a home-based palliative care service launched in December 2015, the foundation felt a need for locally relevant, clinical guidelines to ensure consistency and reliabilty of its service. A Clinical Consultative Committee (CCC) comprising of experienced palliative care professionals, from within and outside India, was constituted to help with the development of robust, evidence-based multidisciplinary clinical guidelines relevant to the delivery of palliative care for adults in a home care setting in Mumbai, India, which could be applied to other similar settings in India and elsewhere.Methodology and Development:The CCC developed 39 guidelines under eight categories; using a structured process from the initial draft to its finalization. The CCC vetted each of the guidelines over monthly Skype meetings for validity, relevance, local applicability and reproducibility. Feedback from the PALCARE team was also incorporated. Thirty-nine clinical guidelines relevant to adult palliative care services in home care setting were developed. These have been discussed and found useful by the PALCARE team. The guidelines are available on the PALCARE website for use by wider professional audience.Conclusion:Development of clinical guidelines locally for palliative care in a home care setting in response to a felt need to ensure quality care and reduce variation in practice has been beneficial in clinical care. It has proved to be a good teaching resource too. Regular audits to measure practice against these guidelines will ensure better patient outcomes.

361P - The role of volunteers in quality palliative care delivery

BackgroundHere in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. To identify and try to solve, to the extent possible, the main difficulties in giving palliative care to the terminal cancer patients of the area. And evaluate the impact of volunteer’s direct care of palliative patients and their families. MethodsFeedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. ResultsWe carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. Since January 2018, 416 cases were studied to enquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. ConclusionsFurther research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere. Legal entity responsible for the studyThe author. FundingHas not received any funding. DisclosureThe author has declared no conflicts of interest.

The Role of Volunteers in Quality Palliative Care Delivery

Introduction: Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. Objective: To identify and try to solve, to the extent possible, the main difficulties in giving palliative care to the terminal cancer patients of the area. And evaluate the impact of volunteer's direct care of palliative patients and their families. Methods: Feedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. Results: We carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. Since January 2015, 496 cases were studied to inquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. Conclusions: Further research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere.

The Role Of Volunteers In Quality Palliative Care Delivery For Terminal Cancer Patient

Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. Pain, fatigue are the main symptoms effecting these patients. In most patients pain and other symptoms control were grossly inadequate due to lack of properly trained manpower in the rural India. However regular homecare visits by a group of social workers were of immense help in the last few months of life. NGO team was well guided by a palliative care specialist. Feedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. We carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. 496 cases were studied to enquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. Further research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere.

What is needed to prepare speech pathologists to work in adult palliative care?

Speech pathologists have a pivotal role in palliative care, assisting patients with swallowing and communication disorders, yet very little is known about the preparedness of speech pathologists to work in this field. To investigate the preparedness of speech pathologists for working in palliative care. The term 'palliative care' was viewed as an encompassing umbrella term incorporating the management/reduction of symptoms and improvement in a person's quality of life at any point of the disease progression. Participants were Australian-trained speech pathologists who provided adult palliative care services. An online questionnaire was used to gather both quantitative and qualitative data from practising speech pathologists. Qualitative data were analysed and interpreted using conventional content analysis. Descriptive statistics were analysed via the Statistical Package for the Social Sciences (SPSS) for Windows Version 22. Non-parametric tests (chi-square and Mann-Whitney U-test) were used for further analysis. The majority (70%) of participants indicated that their university training did not prepare them to practice in palliative care. Participants who received palliative care education at the tertiary level were significantly more prepared to work with palliative patients than those who had not; however, only a minority (27%) had received such training. Just over half (57%) reported having completed post-university professional development in palliative care. The speech pathologist's role in palliative care was also highlighted, with speech pathologists outlining their contribution to the assessment of patients' communication and swallowing abilities. In addition, recommendations for palliative care content to be incorporated into university curriculum were suggested. Speech pathologists can make important contributions to end-of-life care, but there is much scope for improving the availability and quality of university and post-university palliative care training opportunities so that people receiving palliative care are best supported.

P.112 - Palliative medicine and neuromuscular disorders in adults- pilot symptom control clinic patient satisfaction and intervention efficacy

Patients with inherited neuromuscular disorders are generally not cared for by Palliative care services and as such many adult palliative care services have little knowledge of these conditions. As the prognosis of conditions such as Duchenne muscular dystrophy have improved such that patients are living into adulthood and as such symptom control and advanced care planning are areas that need to be explored. We have completed a 12-month pilot ‘symptom control’ clinic with the local palliative care team for the region. These clinics were conducted by the same palliative medicine consultant throughout, accompanied by the neuromuscular team who had identified the patients whose symptom burden had gone beyond their expertise, and that that the patient's disease trajectory had changed. The and management, and from the user perspective whether the clinics were worthwhile and improved their quality of care and life. The patients were asked to complete two different evaluation tools; 1. Symptom improvement was assessed pre-clinic using the SF36 questionnaire as a baseline and at the end of the 12-month pilot. 2.The quality of the clinic was assessed immediately following the consultation using a standardised tool for assessing the quality of the patients' journey. The results will be tabulated for both quality assessment of clinic and results and symptom improvement. The feedback was extremely positive and the initial fears that involving the local adult hospice in the care of neuromuscular patients would be poorly received were not reflected in the evaluation. The primary aim was to understand what diseases need such intervention and what was the symptom burden. One of the secondary aims was to understand from both a health care provider's viewpoint whether these clinics were beneficial and improved patient symptom control.

Clinical trials of medicinal cannabis for appetite-related symptoms from advanced cancer: a survey of preferences, attitudes and beliefs among patients willing to consider participation.

Australian clinical trials are planned to evaluate medicinal cannabis in a range of clinical contexts. To explore the preferences, attitudes and beliefs of patients eligible and willing to consider participation in a clinical trial of medicinal cannabis for poor appetite and appetite-related symptoms from advanced cancer. A cross-sectional anonymous survey was administered from July to December 2015 online and in eight adult outpatient palliative care and/or cancer services. Respondents were eligible if they were ≥18 years, had advanced cancer and poor appetite/taste problems/weight loss and might consider participating in a medicinal cannabis trial. Survey items focused on medicinal rather than recreational cannabis use and did not specify botanical or pharmaceutical products. Items asked about previous medicinal cannabis use and preferences for delivery route and invited comments and concerns. There were 204 survey respondents, of whom 26 (13%) reported prior medicinal cannabis use. Tablets/capsules were the preferred delivery mode (n = 144, 71%), followed by mouth spray (n = 84, 42%) and vaporiser (n = 83, 41%). Explanations for preferences (n = 134) most commonly cited convenience (n = 66; 49%). A total of 82% (n = 168) of respondents indicated that they had no trial-related concerns, but a small number volunteered concerns about adverse effects (n = 14) or wanted more information/advice (n = 8). Six respondents volunteered a belief that cannabis might cure cancer, while two wanted assurance of efficacy before participating in a trial. Justification of modes other than tablets/capsules and variable understanding about cannabis and trials will need addressing in trial-related information to optimise recruitment and ensure that consent is properly informed.

Functional vitamin B12 deficiency in advanced malignancy: implications for the management of neuropathy and neuropathic pain.

Treatment of neuropathic pain and chemotherapy-induced peripheral neuropathy (CIPN) in patients with malignancy is often unsuccessful. Functional vitamin B12 deficiency, defined by elevated levels of the B12-dependent metabolites, methylmalonic acid (MMA), and/or homocysteine, despite normal B12 values, may cause neuropathy and is associated with disorders linked to increased oxidative stress. Since both cancer and neurotoxic antineoplastic agents increase oxidative stress, a role for functional B12 deficiency in CIPN was considered. A retrospective record review of 241 cancer subjects evaluated by the adult palliative care service for B12 deficiency in a university-based cancer center between October 2008 and September 2012 with measurement of B12, MMA, and/or homocysteine levels was performed. B12 values were elevated (>900pg/ml) in 30% and low (≤300pg/ml) in 17% of subjects tested. Elevated MMA (>250nmol/l) and homocysteine (>12.1μmol/l) levels occurred in 38 and 23% of subjects respectively and at least one metabolite was increased in 54% of evaluable subjects. Even when B12 values were ≥1500pg/ml (n=36), increased MMA and homocysteine values occurred in 31 and 23% of subjects, respectively. B12 therapy decreased MMA values in all four subjects studied and improved neurologic findings in the three subjects tested. Functional vitamin B12 deficiency is common in subjects with advanced malignancy. Further studies are needed to determine if this disorder is a risk factor for CIPN and if B12 therapy has a role in the management and/or prevention of neuropathy and neuropathic pain in this population.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.

Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies.