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Background: Paracentesis is commonly undertaken in patients with cancer-related ascites. Aim: To systematically investigate the symptomatic benefits and harms experienced by patients with cancer undergoing paracentesis using real-world data in the palliative care setting. Design: Prospective, multisite, observational, consecutive cohort study. Benefits and harms of paracentesis were assessed between 01/07/2018 and 31/02/2021 as part of routine clinical assessments by treating clinicians at four timepoints: (T0) before paracentesis; (T1) once drainage ceased; (T2) 24 h after T1 and (T3) 28 days after T1 or next paracentesis, if sooner. Setting/participants: Data were collected from 11 participating sites across five countries (Australia, England, Hong Kong, Malaysia and New Zealand) on 111 patients undergoing paracentesis via a temporary (73%) or indwelling (21%) catheter: 51% male, median age 69 years, Australia-modified Karnofsky Performance Score 50. Results: At T1 ( n = 100), symptoms had improved for most patients (81%), specifically abdominal distension (61%), abdominal pain (49%) and nausea (27%), with two-thirds experiencing improvement in ⩾2 symptoms. In the remaining patients, symptoms were unchanged (7%) or worse (12%). At least one harm occurred in 32% of patients, the most common being an ascitic leak ( n = 14). By T3, 89% of patients had experienced some benefit and 36% some harm, including four patients who experienced serious harm, one of which was a fatal bowel perforation. Conclusion: Most patients obtained rapid benefits from paracentesis. Harms were less frequent and generally mild, but occasionally serious and fatal. Our findings help inform clinician-patient discussions about the potential outcomes of paracentesis in this frail population.

Background: Real-world effectiveness of interventions in palliative care need to be systematically quantified to inform patient/clinical decisions. Neuropathic pain is prevalent and difficult to palliate. Tricyclic antidepressants have an established role for some neuropathic pain aetiologies, but this is less clear in palliative care. Aim: To describe the real-world use and outcomes from amitriptyline or nortriptyline for neuropathic pain in palliative care. Design: An international, prospective, consecutive cohort post-marketing/phase IV/pharmacovigilance/quality improvement study of palliative care patients with neuropathic pain where the treating clinician had already made the decision to use a tricyclic antidepressant. Data were entered at set times: baseline, and days 7 and 14. Likert scales graded benefits and harms. Setting/participants: Twenty-one sites (inpatient, outpatient, community) participated in six countries between June 2016 and March 2019. Patients had clinician-diagnosed neuropathic pain. Results: One hundred and fifty patients were prescribed amitriptyline (110) or nortriptyline (40) of whom: 85% had cancer; mean age 73.2 years (SD 12.3); mean 0–4 scores for neuropathic pain at baseline were 1.8 (SD 1.0). By day 14, doses of amitriptyline were 57 mg (SD 21) and nortriptyline (48 mg (SD 21). Fifty-two (34.7%) patients had pain improvement by day 14 (amitriptyline (45/110 (43.3%); nortriptyline (7/40 (18.9%)). Thirty-nine (27.7%) had new harms; (amitriptyline 29/104 (27.9%); nortriptyline 10/37 (27.0%); dizziness ( n = 23), dry mouth ( n = 20), constipation ( n = 14), urinary retention ( n = 10)). Benefits without harms occurred (amitriptyline (26/104 (25.0%); nortriptyline (4/37 (10.8%)). Conclusions: Benefits favoured amitriptyline while harms were similar for both medications.

IntroductionAdequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families.Methods and analysisThe iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights.Ethics and disseminationThe cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying.Trial registration numberNCT04271085.

Background The Gaucher Investigative Therapy Evaluation (GAUCHERITE) is a national clinical cohort of 250 patients aged 5–87 years with Gaucher disease - an ultra-rare genetic disorder. To inform clinical decision-making and improve pathophysiological understanding, we characterized the course of Gaucher disease and explored the influence of costly innovative medication and other interventions. Retrospective and prospective clinical, laboratory and radiological information including molecular analysis of the GBA1 gene and comprising > 2500 variables were collected systematically into a relational database with banking of collated biological samples in a central bioresource. Data for deep phenotyping and life-quality evaluation, including skeletal, visceral, haematological and neurological manifestations were recorded for a median of 17.3 years. Results At baseline, 223 of the 250 patients were classified as type 1 Gaucher disease. Intensive neurological phenotyping in a subgroup of 40 originally considered to have only systemic features, revealed neurological involvement in 18: two had Parkinson disease and 16 patients had other neuronopathic features. This revised the number affected by type 3 Gaucher disease to a total to 43. Skeletal manifestations occurred in most patients in the cohort (131 of 201 specifically reported bone pain). Symptomatic osteonecrosis and fragility fractures occurred respectively in 76 and 37 of all 250 patients and the first osseous events occurred significantly earlier in those with neuronopathic disease. Analysis of the longitudinal real-world data permitted stratification of Gaucher disease on the basis of exposure to advanced therapies and splenectomy. Splenectomy was associated with an increased hazard of fragility fractures, osteonecrosis and orthopaedic surgery; after splenectomy, there were marked gender differences in the risk of fragility fractures over time. Combined with associated surgical procedures, the skeletal manifestations represent a heavy burden of illness, especially in patients formerly unable to access disease-modifying therapies. Conclusion Gaucher disease has been explored during a period of transformation by disease-modifying interventions. With the introduction of advanced therapies, repeated longitudinal measures in this real-world cohort allowed the condition to be stratified into clear clinical endotypes. Our study reveals diverse and changing phenotypic manifestations with neurological, systemic and skeletal disease as inter-related sources of disability. Electronic Supplementary Material The online version of this article contains supplementary material, which is available to authorized users.

Background Immunisation of children is a highly cost-effective public health intervention and fosters health equity for the overall population. The WHO Immunisation Agenda 2030 highlights coverage and equity as one of the strategic priority goals to reach high equitable immunisation coverage at national levels and in all districts. We analysed full immunisation coverage among children aged 12-23 months in Kenya and estimated the inequities in full immunisation coverage associated with socioeconomic, geographic, maternal, child, and place of birth characteristics using data from the 2014 Kenya Demographic and Health Survey. Methods We analysed full immunisation coverage (1-dose BCG, 3-dose DTP-HepB-Hib, 3-dose polio, 1-dose measles, and 3-dose pneumococcal vaccines) of 3,943 children aged 12–23 months. We disaggregated mean coverage by socioeconomic (household wealth, religion, ethnicity), geographic (place of residence, province), maternal (maternal age at birth, maternal education, maternal marital status, maternal household head status), child (sex of child, birth order), and place of birth characteristics. We conducted bivariate and multivariate logistic regression to assess associations between full immunisation coverage and socioeconomic, geographic, maternal, child, and place of birth characteristics. Results Immunisation coverage ranged from 82% [81–84] for the third dose of polio to 97.4% [96.7–98.2] for the first dose of DTP-HepB-Hib, while full immunisation coverage was 68% [66–71] in 2014. After controlling for other background characteristics, children of mothers with primary school education or higher have at least 54% higher odds of being fully immunised compared to children of mothers with no education. Children born in clinical settings have 41% higher odds of being fully immunised compared to children born in home settings. Children in the Coast, Western, Central, and Eastern regions had at least 74% higher odds of being fully immunised compared to children in the North Eastern region, while children in urban areas had 26% lower odds of full immunisation compared to children in rural areas. Children in the middle and richer wealth quintile households were 43–57% more likely to have full immunisation coverage compared to children in the poorest wealth quintile households. Children who were sixth born or higher had 37% lower odds of full immunisation compared to first-born children. Conclusions The inequities in full immunisation adversely affect children of mothers with no education, born in home settings, in regions with limited health infrastructure, living in poorer households, and of higher birth order. Further, the COVID-19 pandemic has disrupted routine and campaign immunisation services in 2020 and enhances the risk of vaccine-preventable disease outbreaks, but it also presents an opportunity to tackle the identified inequities in vaccine uptake as immunisation services are restored to capacity.

Cardiovascular disease (CVD) is one of the leading causes of death across the world. CVD can lead to angina, heart attacks, heart failure, strokes, and eventually, death; among many other serious conditions. The early intervention with those at a higher risk of developing CVD, typically with statin treatment, leads to better health outcomes. For this reason, clinical prediction models (CPMs) have been developed to identify those at a high risk of developing CVD so that treatment can begin at an earlier stage. Currently, CPMs are built around statistical analysis of factors linked to developing CVD, such as body mass index and family history. The emerging field of machine learning (ML) in healthcare, using computer algorithms that learn from a dataset without explicit programming, has the potential to outperform the CPMs available today. ML has already shown exciting progress in the detection of skin malignancies, bone fractures and many other medical conditions. In this review, we will analyse and explain the CPMs currently in use with comparisons to their developing ML counterparts. We have found that although the newest non-ML CPMs are effective, ML-based approaches consistently outperform them. However, improvements to the literature need to be made before ML should be implemented over current CPMs.

Context Episodic breathlessness is a distressing and difficult to treat symptom because of its short duration. Fast actioned intranasal fentanyl (INF) is potentially more suitable than oral opioids. Objectives To examine the feasibility, preliminary efficacy, and safety of INF for the treatment of episodic breathlessness from advanced nonmalignant conditions in hospice patients. Methods Phase IIB, double-blind, randomized controlled, multisite, INF citrate solution vs. placebo crossover feasibility study. Opioid-tolerant patients were to treat six episodes of breathlessness using INF spray. The primary outcome was change in the Visual Analogue Scale for dyspnea (VAS-D) score from baseline to 15 minutes after study drug's administration (VAS-D15). Other outcomes were to collect demographic data and determine the use of rescue medications, safety, and feasibility of the study design. Results Twenty-one of 49 eligible patients were enrolled, and 19 (90%) patients completed the study. The mean difference in VAS-D15 between fentanyl and placebo was −3.37 mm (95% CI = −10.35 to 3.61 mm; P = 0.337). There was no statistically significant or clinically meaningful difference between INF and placebo in relieving the sensation of discomfort in episodic breathlessness. No significant drug-related adverse event or detrimental effect on vital signs was observed. Conclusion We found no difference between INF and placebo in relieving episodic breathlessness in nonmalignant conditions. INF was well tolerated, and the study design proved to be feasible in hospice patients with advanced diseases. Future study using higher concentration of fentanyl solution may be warranted.

Background Neurological forms of Gaucher disease, the inherited disorder of β-Glucosylceramidase caused by bi-allelic variants in GBA1, is a progressive disorder which lacks a disease-modifying therapy. Systemic manifestations of disease are effectively treated with enzyme replacement therapy, however, molecules which cross the blood–brain barrier are still under investigation. Clinical trials of such therapeutics require robust, reproducible clinical endpoints to demonstrate efficacy and clear phenotypic definitions to identify suitable patients for inclusion in trials. The single consistent clinical feature in all patients with neuronopathic disease is the presence of a supranuclear saccadic gaze palsy, in the presence of Gaucher disease this finding serves as diagnostic of ‘type 3’ Gaucher disease. Methods We undertook a study to evaluate saccadic eye movements in Gaucher patients and to assess the role of the EyeSeeCam in measuring saccades. The EyeSeeCam is a video-oculography device which was used to run a protocol of saccade measures. We studied 39 patients with non-neurological Gaucher disease (type 1), 21 patients with type 3 (neurological) disease and a series of 35 healthy controls. Mean saccade parameters were compared across disease subgroups. Results We confirmed the saccadic abnormality in patients with type 3 Gaucher disease and identified an unexpected subgroup of patients with type 1 Gaucher disease who demonstrated significant saccade parameter abnormalities. These patients also showed subtle neurological findings and shared a GBA1 variant. Conclusions This striking novel finding of a potentially attenuated type 3 Gaucher phenotype associated with a specific GBA1 variant and detectable saccadic abnormality prompts review of current disease classification. Further, this finding highlights the broad spectrum of neuronopathic Gaucher phenotypes relevant when designing inclusion criteria for clinical trials.

Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

Objectives Loss of appetite is prevalent in palliative care and distressing for patients and families. Therapies include corticosteroids or progestogens. This study explores the net effect of dexamethasone on anorexia. Methods Prospective data were collected when dexamethasone was started for anorexia as part of routine care. The National Cancer Institute’s Common Toxicity Criteria for Adverse Events (NCICTCAE) Likert scales assessed severity of anorexia and immediate and short-term harms at 2 time points: baseline and 7 days. Results This study (41 sites, 8 countries) collected data (July 2013 to July 2014) from 114 patients (mean age 71 (SD 11), 96% with cancer). Median Australian-modified Karnofsky Performance Scale was 50% (range 20–70). Mean baseline NCICTCAE anorexia score was 2.7 (SD 0.6; median 3). 6 patients died by day 7. Of 108 evaluable patients, 74 (68.5%; 95% CI 59.0% to 76.7%) reported ≥1 reduction anorexia scores by day 7, of whom 30 were 0. Mean dexamethasone dose on day 7 was 4.1 mg/day (SD 3.4; median 4; range 0–46 mg). 24 patients reported ≥1 harms (32.4% CI 22.6% to 44.1%; insomnia n=10, depression n=7, euphoria n=7 and hyperglycaemia n=7). Of 24 patients with no benefit, 10 reported ≥1 harms. Conclusions This study shows positive and negative effects of 7 days of dexamethasone as an appetite stimulant in patients with advanced life-limiting illnesses. Identifying clinicodemographic characteristics of people most at risk of harms with no benefit is a crucial next step. Longer term follow-up will help to understand longer term and cumulative harms.

Invasive lobular carcinoma (ILC) accounts for 5-15% of breast cancers. In comparison to other types of breast cancer, ILC is more likely to be associated with multifocal and contralateral breast involvement as well as a tendency to a diffuse infiltrative growth pattern which can represent a diagnostic challenge. The National Institute of Clinical Excellence guidelines in 2009 recommended the use of magnetic resonance imaging (MRI) in the preoperative assessment of ILC. This study aims to assess compliance with the guidelines in two District General Hospitals and the utility of MRI in the investigation of ILC. All cases of ILC between 2011 and 2013 were retrospectively identified from the pathology database and their breast imaging findings, pathology report, and operative intervention were reviewed. A total of 126 patients were identified with ILC, of these 46 had MRI preoperatively (36.5%). MRI upgraded mammography/ultrasound diagnoses in 10 patients (21.7%). MRI showed multicentric unilateral disease in 17 patients (37.0%) occult on ultrasound/mammogram, with these patients undergoing mastectomy and 16/17 (94.1%) confirmed multifocality on pathology. MRI showed a contralateral lesion in 9 patients (19.6%), four (8.7%) of which were malignant and had bilateral surgery, and five (10.9%) were benign on further imaging/biopsy. MRI also downgraded three patients (6.5%) to unifocal disease with reported multifocal appearances on mammography/ultrasound, and these patients underwent breast-conserving surgery. MRI adds significant additional information to mammograms/ultrasound in ILC and should be undertaken in all such cases preoperatively assuming no contraindication.

Background: Decreasing oral intake is common towards the end of life and a potential source of distress and concern for patients, relatives, whānau and clinicians. This paper provides insight to inform practice regarding clinicians' perceptions, practices, responses and communication with patients and their companions regarding declining oral intake towards the end of life. Methods: In this qualitative study ten specialist palliative care staff participated in semi-structured interviews. Qualitative thematic analysis was used to analyse the data. Findings: Three themes were identified: declining oral intake was a natural part of the dying process; responding empathetically; and clinicians described specific aims and ways regarding communication. Conclusion: Insight into clinicians' endeavours to manage declining oral intake and support the wellbeing of patients, families, and whānau can inform practice. However the perspectives of family, whānau and health professionals continue to show significant variation regarding the communication given and received around declining oral intake towards the end of life.

Background: Patients approaching death often have a decreasing oral intake, which can be distressing for relatives. Little is known about the relatives’ experiences with and perceptions of oral intake at the end of life. Aim: This study aims to contribute to a more thorough understanding of relatives’ concerns regarding decreased oral intake of the patient at the end of life. Design: Qualitative interview study: semi-structured interviews were transcribed verbatim and analysed using qualitative content analysis. Setting/participants: Twenty-three bereaved relatives of patients who had been referred to a New Zealand palliative care service were interviewed. Results: All relatives experienced significant changes in patients’ oral intake at the end of life. Oral intake towards the end of life was considered important and is perceived as meaningful by relatives in different ways, such as nutritional value, enjoyment, social time, daily routine and a way of caring. Relatives responded differently to decreasing oral intake; some accepted it as inherent to the dying process, others continued efforts to support the patient’s oral intake. Some relatives perceived decreasing oral intake as the patient’s choice, and some viewed maintaining oral intake as part of the battle against the disease. Relatives recalled limited communication with health-care professionals concerning oral intake at the end of life. Conclusions: This study revealed the complexity of meaning relatives’ experiences with dying patients’ decreasing oral intake. Their perceptions and concerns were related to their awareness of the imminent death. These findings can guide staff involved in care delivery to better support relatives.

Aim: To determine staff perceptions of the impact of the Liverpool Care Pathway for the dying patient (LCP) in three aged residential care facilities in New Zealand. Methods: A mixed methodology approach was adopted, including the use of a survey, focus groups, and individual interviews. Findings: Fifteen of 194 staff participated in the focus groups (five nurses and nine health-care assistants). The interviewees included three GPs, one registered nurse, and one manager. The post-implementation survey response rate of 13% was poorer than the 32% response rate to a pre-implementation survey reported elsewhere. Nevertheless, there was congruence across the data sources. The participating staff perceived multiple benefits to residents, family, whãnau, and staff following implementation of the LCP. Conclusion: As a tool the LCP was effective in supporting, guiding, and prompting care delivery. However, challenges remained, particularly regarding environmental factors.

Anxiety is a major component of breathlessness and is often palliated with benzodiazepines. Midazolam is a short-acting water-soluble benzodiazepine with a rapid onset of action and short half-life. Intranasal midazolam had been shown to be of marked clinical benefit in an uncontrolled pilot study for the control of dyspnoea. A blinded randomised controlled study was therefore undertaken across four Australasian palliative care services. All participants received six numbered study nasal spray (SNS) bottles, three of which contained midazolam and three placebo. They were instructed to use one SNS bottle on each day they were breathless, for 6 days within 2 weeks. Dyspnoea scores were recorded before and at set time intervals following the first use of each SNS bottle. Across all SNS bottles, the maximum change of 2.1 on an 11-point numerical rating scale was seen at 60 min. There was no difference in dyspnoea score between the two arms. Approximately 50 % of participants in each arm had a positive response (i.e. ≥2 point change in dyspnoea score from baseline). Anxiety scores at baseline were low. The most common adverse event was local nasal reactions. Intranasal midazolam had no clinical benefit over intranasal placebo for the control of dyspnoea. The low level of anxiety at baseline and dose of active drug delivered may have been important factors. Many participants found the SNS bottles to be a challenging mode of drug delivery. This study confirms the importance of placebo-controlled trials for defining best clinical practise.

Understanding current end of life (EOL) care delivery in acute care is an important prerequisite to positively influencing practice, and published New Zealand (NZ) and international data are limited. Therefore, staff perceptions of EOL care in the hospital setting were investigated via survey. This article presents key findings.A total of 610 staff members in a 194-bed regional hospital were surveyed regarding their perceptions of EOL care, which yielded a response rate of 29% with 179 surveys returned. Respondents were from medical, nursing, and allied health staff working in medical, surgical, elder health, and a regional cancer treatment service. Responses to Likert scale statements regarding the Care of the dying, Communication, Teamwork, Documentation, Attitudes to death and dying in the workplace, and Barriers to the care of patients, their whānau (a NZ Māori word that refers to extended family or family group), and families frequently contrasted with additional and explanatory comments. The thematic analysis of written text identified five themes: The reality of care, The team dynamic, The direction of care, Knowledge and education, and Environmental and organizational factors.The quality and timeliness of EOL care was significantly influenced by the elements informing the themes and the pervasive nature and importance of communication. Meeting the needs of dying patients in acute care was complex but a significant priority for staff.

There is a growing burden of end-stage cardiovascular disease in the aging Western world and a need to improve access to best evidence-based care, including patients located in rural areas.Disparities are evident within rural settings for patients with cardiovascular disease. Useful guidelines exist to guide clinical services integration. Palliative care and cardiac services need to integrate their services defining the primary care lead with heart failure nurses coordinating. Earlier communication around disease implications, symptom burden and objectives of care feed into the integrated model for best and agreed outcomes to be achieved. Telehealth can assist a rural population when it is part of that integrated care model but more research on telemonitoring is required before conclusions can be drawn on the role of this expensive technology. Individual care plans can assist all involved. Subcutaneous furosemide may play a part in keeping a patient at home and with good palliative care the place of death can be the patient's home, if that is desired.Rural patients with end-stage heart failure can be well supported at home as long as the model of care is united to support them. This includes heart failure nurse coordination based in the cardiac team, palliative care and general practice support.

Background and methods: Ensuring appropriate palliative and end-of-life (EOL) care in the acute environment is complex and challenging. The Liverpool Care Pathway (LCP) aims to support staff to provide holistic EOL care utilizing a structured framework to prompt and guide care. We report on the post-implementation findings of a mixed methodology (survey and focus group [FG] forums) study into staff perceptions of EOL care following the pilot implementation of the LCP into two acute wards. Results and conclusions: Study results suggest that within acute settings staff perceive that the LCP improves EOL care overall, assists interdisciplinary communication around death and dying, and that is a useful tool to positively influence decision making and care delivery. Further research into aspects of staff communication, diagnosing dying, changing direction of care, and the physical environment is warranted.

New Zealand is one of 20 countries implementing the Liverpool Care Pathway for the Dying Patient (LCP) to improve quality care of the dying. The LCP is an integrated care pathway that guides healthcare professionals to deliver evidence-based, best practice care to dying patients and their families in the last days and hours of life, irrespective of diagnosis or care setting. Currently the LCP Central Team coordinates LCP implementation and dissemination for all international collaborating countries except New Zealand, from its base in Liverpool in the UK. With the support of the LCP Central Team, New Zealand is the first country to establish a National Office to assume the responsibility for promoting the sustainable implementation of the LCP within its own borders and context of end-of-life care.To evaluate the role and value of a New Zealand National LCP Office (NZ LCP Office) from the perspective of key stakeholders.A mixed methods approach was applied, which intentionally combined two different survey methods in sequence. In Phase 1, key stakeholders (n = 28) were interviewed to explore their perspectives for the role and value of the NZ LCP Office. Findings from Phase 1 informed an online questionnaire distributed to a larger group of key stakeholders (n = 36, 62% response rate) in Phase 2.When considering the role of the NZ LCP Office, key stakeholders identified two core services as highly important, namely the promotion of the sustainable implementation of LCP and the provision of a national LCP information network. Other key initiatives identified by key stakeholders as important included the NZ LCP Office continuing to work in consultation and collaboration with the LCP Central Team and to be a voice for end-of-life care issues in New Zealand. The value or benefit of the NZ LCP Office was endorsed, in that service performance was rated as good or very good by at least 90% of the respondents, plus 40% of participants perceived the NZ LCP Office had contributed to positive changes in LCP document compliance, program integrity and improvement in care of the dying to a moderate extent.Having a National LCP Office in New Zealand to coordinate sustainable LCP implementation and maintain the integrity of the LCP program within the context of the country's own healthcare system was seen as crucial by key stakeholders.

Increasingly, aged residential care (ARC) facilities are places where the lives of older people with complex care needs end. Hence, end-of-life (EOL) care is a significant component of work for ARC staff. In the absence of New Zealand research, staff perceptions of EOL care were sought at three aged-care facilities in a New Zealand District Health Board region. The research provided valuable data regarding care delivery and can be used to inform the introduction of an integrated care pathway (ICP). EOL care pathways are not commonly used in New Zealand ARC facilities and the influence of ICPs, such as the Liverpool Care Pathway (LCP) for the dying patient has not been investigated. Additionally, most international studies report on the introduction of the LCP without baseline preimplementation data.In the present study, staff (n = 195) involved in caring for residents, their families, and whānau at EOL were surveyed to obtain demographic data and staff perceptions of EOL care via Likert scale and open ended questions.A response rate of 32% was obtained. Respondents indicated a relatively high level of confidence regarding their care of the dying, including aspects of communication, teamwork and use of documentation. However, this was often contradicted by their written responses. Written comments were analyzed thematically and six themes identified: the naturalness of dying; the character of care; care relationships; emotional response; knowledge; and the organizational environment. Data analysis provided a rich and informative description of staff perceptions of EOL and issues influencing care.

The health reforms of the 1990s and early 21st century have seen unheralded change in the delivery of health services in New Zealand, and the concept of integration of primary and specialist or secondary services into a seamless health delivery service is one of the key planks of national and regional healthcare planning in New Zealand. This paper reports on a successful primary secondary integration project. Starting with commentary on the historical difficulties that acted as a catalyst to this initiative, it reports on the development process, how the model works in practice, and outlines some initial evaluation work done as part of its quality improvement component. Given the collaborative nature of this project and its scope across primary and specialist care sectors, the authors believe this model has implications and relevance across a wide spectrum of the New Zealand health service.

To study the prevalence and patterns of complementary/alternative medicine (CAM) use in cancer patients managed by a New Zealand regional cancer treatment centre.A self-administered anonymous questionnaire was used to survey patients attending outpatient clinics of the MidCentral Regional Cancer Treatment Service. Questions addressed patient demographics, cancer diagnosis and conventional treatments received. CAM users were asked to identify types of therapies used, reasons for use, perceived effectiveness, safety and financial cost.Questionnaires were distributed to 350 patients, with 200 assessable replies received. Overall, 49% of patients in this group used CAM, with vitamins, antioxidants, alternative diets, and herbal therapies the most commonly used agents and usage was more common in younger patients. CAM was used by 47% to improve quality of life and by 30% in the hope of a cure of their cancer. Of CAM users, 71% believed these therapies had been helpful in the management of their cancer, and 89% felt they were safe. Only 41% of users had discussed CAM with their oncologist and almost one third had started such therapies before being seen at the Cancer Treatment Centre. The median cost of CAM was NZ$55/month.CAM is commonly used by New Zealand cancer patients, who often use multiple therapies, not only during conventional treatment, but also without consultation with their oncologist. This lack of open communication about CAM between patients and medical staff may prevent identification not only of potential harmful effects, but also of positive and negative drug interactions between CAM and conventional therapies.

Background The Liverpool Care Pathway for the Dying Patient was introduced into parts of New Zealand in 2005. Unique ‘cultural goals’ were added, in recognition of the importance of the provision of culturally appropriate care. Aims To assess the use of the cultural goals in practice and to investigate stakeholders9 experiences and perspectives of how the cultural goals influence culturally appropriate end-of-life care. Methods A mixed method study including, in this phase, two clinical audits, semi-structured interviews with 20 stakeholders, and a focus group with 20 Maori clinical staff. Interview data were analysed thematically, and audit data were analysed using descriptive statistics and content analysis. Results Participants identified many factors that acted as constraints or enablers in the provision of culturally appropriate care. These factors operated at multiple levels, including at the individual level of clinicians and carers, at the organisational level, the health sector level, and across cultural groups within our society. Constraints included staff discomfort in talking about cultural needs and providing cultural care, the increasingly multicultural health workforce with divergent understandings of cultural needs during the end-of-life phase, differing palliative care service contracts, and structural features of organisations that impeded staff meeting patients9 and families9 cultural needs. Enablers, such as in-service education programmes, addressed some, but not all of these constraints. Enablers operated mostly at the level of individual clinicians and services. Ongoing support and funding for development of these initiatives was relatively unstable. Conclusions Culturally appropriate care is a core priority to reduce health inequities related to access to palliative care. However the increasing complexity of the cultural landscapes of patients and families, clinicians and carers, services, the health sector and society mean that a sustainable, multilevel approach is required to address cultural needs.

Introduction: Erlotinib is a small molecule inhibitor of epidermal growth factor receptor tyrosine-kinase activity that has been shown to significantly increase survival for patients with previously treated advanced non-small cell lung cancer. Here, we report safety and efficacy data from a large, global, open-label, phase IV trial of erlotinib (Tarceva Lung Cancer Survival Treatment). Methods: Patients who had previously failed on chemotherapy or radiotherapy and were unsuitable for these treatments were treated with oral erlotinib (150 mg/d) until disease progression or unacceptable toxicity. Results: The disease control rate was 69% in 5394 patients for whom best response data were available. Survival data were available for 6580 patients. Median progression-free and overall survival times were 3.25 months and 7.9 months, respectively. The 1-year survival rate was 37.7%. Among the 6580 patients included in the safety analysis, 799 (12%) experienced one or more erlotinib-related adverse events (AEs, other than prespecified AEs defined in the protocol), and only 4% experienced an erlotinib-related serious AE. Of the 6580 patients for whom data were available, dose reductions were reported in 1096 (17%), the majority (95%) due to an erlotinib-related AE (most commonly rash 65% or diarrhea 10%). Treatment was discontinued for 337 patients (5%) because of erlotinib-related AEs. Incidence of erlotinib-related rash was investigated as a separate end point. Seventy-one percent of patients for whom data were available experienced erlotinib-related rash; of these, the majority of cases were grade 1/2 (59%). Conclusions: These data confirm the favorable efficacy and safety profile of erlotinib in a large heterogeneous non-small cell lung cancer population.