The transition to palliative care: A critical exploration in the context of metastatic melanoma

This research explored the transition to palliative care process through critical analysis of the experiences of patients diagnosed with metastatic melanoma, family carers and health professionals. The outcomes depict a complex intersection between acute care services and palliative care where the discipline of palliative care struggled to position itself within a highly specialised health system. The findings indicate uncertainty around scopes of practice with ambiguity and tension around the transition to palliative care. The research thus argues for stronger and more coherent partnerships and a critical and interdisciplinary conversation about the positioning of palliative care in the acute care sector.

Oral liquid nutritional supplements for people with dementia in residential aged care facilities

AIM: This systematic review investigated the prescription, administration and effectiveness of oral liquid nutritional supplements (OLNS) for people with dementia in residential aged care facilities (RACF). METHODS: A comprehensive search of relevant databases, hand searching and cross-referencing found 15 relevant articles from a total of 2910 possible results. Articles which met the inclusion criteria were critically appraised by two independent reviewers using the relevant Joanna Briggs Institute (JBI) appraisal checklist. Data were extracted using the relevant JBI extraction instruments. No data synthesis was possible due to clinical and methodological heterogeneity. RESULTS: Included studies examined a range of strategies, issues and results related to OLNS for persons with dementia in RACFs; however there appear to be significant gaps in the current body of research, particularly in relation to examinations of effectiveness. CONCLUSIONS: This review was unable to produce a definitive finding regarding effectiveness. OLNS may improve the nutritional state of residents with dementia and help prevent weight loss, and there is some suggestion that it may slow the rate of cognitive decline. However, in order for OLNS to be effective, nursing and care staff need to ensure that sufficient attention is paid to the issues of prescription and administration.

A survey of patients' experience of pain and other symptoms while receiving care from palliative care services

Context In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. Objective To explore patients’ levels of pain and other symptoms while receiving care from PCSs. Method PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. Results Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe ‘other symptoms’, 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. Conclusions Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as ‘severe’. Our findings highlight the importance of routine, comprehensive assessment of patients’ concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.

"It broke our hearts": Understanding parents' lived experiences of their child's admission to an acute mental health care facility

This article reports the evaluative findings of an Early Psychosis Education Program (EPEP) designed to support parents caring for their child who was recently admitted to the psychiatric intensive care unit of an inpatient mental health care facility in Australia. The EPEP offered education on mental illness, treatment options, and medication, as well as information on the recovery model of care. The EPEP was facilitated by two RNs and was evaluated for educational effectiveness using a simple pre- and postevaluation questionnaire. The evaluation revealed two themes expressed by parents: "We didn't see it coming," and "Hopelessness and helplessness." The themes highlighted the parents' lack of mental health care knowledge prior to the EPEP, which had a significant impact on the parents' experiences and well-being. The evaluative findings highlighted a need for a nurse-led EPEP within the community. A community EPEP has the potential to strengthen the partnership between parents, families, and mental health service providers and to help with the provision of a recovery framework of care.

Implementing improvements to health care services in the US

In a previous blog I was critical of the US health care system for not using cost-effectiveness information to plan their services. Today I’m going to talk about the implementation of innovation in health services, something the US does really well compared to Australia.

What do most Americans think of cost-effectiveness research in health care?

My impression is that explicit data on the cost-effectiveness of different health care services are not valued highly by US policy makers. An example is a recent decision to approve ipilimumab for the treatment of metastatic melanoma. The extra health benefit over standard treatment is 2.1 months in previously untreated patients and the cost is $120,000 for 4 doses. This is poor value for money. Had $120,000 been allocated to an intensive lifestyle modification programme for diabetes risk (Diabet Med. 2004 Nov;21(11):1229-36) then 67 years of life or 800 months could have been returned. A massive increase in health benefits for the same costs.

Multiple perspectives on quality of life for residents with dementia in long term care facilities: Protocol for a comprehensive Australian study

Background Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL. Methods The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations. Conclusions This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach

Background Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. Methods A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Results Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence; (b) having something to do, and; (c) the importance of social interaction. Conclusions The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.

Process quality indicators targeting cognitive impairment to support quality of care for older people with cognitive impairment in emergency departments

Objectives The objective of this study was to develop process quality indicators (PQIs) to support the improvement of care services for older people with cognitive impairment in emergency departments (ED). Methods A structured research approach was taken for the development of PQIs for the care of older people with cognitive impairment in EDs, including combining available evidence with expert opinion (phase 1), a field study (phase 2), and formal voting (phase 3). A systematic review of the literature identified ED processes targeting the specific care needs of older people with cognitive impairment. Existing relevant PQIs were also included. By integrating the scientific evidence and clinical expertise, new PQIs were drafted and, along with the existing PQIs, extensively discussed by an advisory panel. These indicators were field tested in eight hospitals using a cohort of older persons aged 70 years and older. After analysis of the field study data (indicator prevalence, variability across sites), in a second meeting, the advisory panel further defined the PQIs. The advisory panel formally voted for selection of those PQIs that were most appropriate for care evaluation. Results In addition to seven previously published PQIs relevant to the care of older persons, 15 new indicators were created. These 22 PQIs were then field tested. PQIs designed specifically for the older ED population with cognitive impairment were only scored for patients with identified cognitive impairment. Following formal voting, a total of 11 PQIs were included in the set. These PQIs targeted cognitive screening, delirium screening, delirium risk assessment, evaluation of acute change in mental status, delirium etiology, proxy notification, collateral history, involvement of a nominated support person, pain assessment, postdischarge follow-up, and ED length of stay. Conclusions This article presents a set of PQIs for the evaluation of the care for older people with cognitive impairment in EDs. The variation in indicator triggering across different ED sites suggests that there are opportunities for quality improvement in care for this vulnerable group. Applied PQIs will identify an emergency services' implementation of care strategies for cognitively impaired older ED patients. Awareness of the PQI triggers at an ED level enables implementation of targeted interventions to improve any suboptimal processes of care. Further validation and utility of the indicators in a wider population is now indicated.

Structural quality indicators to support quality of care for older people with cognitive impairment in emergency departments

Objectives The purpose of this study was to identify the structural quality of care domains and to establish a set of structural quality indicators (SQIs) for the assessment of care of older people with cognitive impairment in emergency departments (EDs). Methods A structured approach to SQI development was undertaken including: 1) a comprehensive search of peer-reviewed and gray literature focusing on identification of evidence-based interventions targeting structure of care of older patients with cognitive impairment and existing SQIs; 2) a consultative process engaging experts in the care of older people and epidemiologic methods (i.e., advisory panel) leading to development of a draft set of SQIs; 3) field testing of drafted SQIs in eight EDs, leading to refinement of the SQI set, and; 4) an independent voting process among the panelists for SQI inclusion in a final set, using preestablished inclusion and exclusion criteria. Results At the conclusion of the process, five SQIs targeting the management of older ED patients with cognitive impairment were developed: 1) the ED has a policy outlining the management of older people with cognitive impairment during the ED episode of care; 2) the ED has a policy outlining issues relevant to carers of older people with cognitive impairment, encompassing the need to include the (family) carer in the ED episode of care; 3) the ED has a policy outlining the assessment and management of behavioral symptoms, with specific reference to older people with cognitive impairment; 4) the ED has a policy outlining delirium prevention strategies, including the assessment of patients' delirium risk factors, and; 5) the ED has a policy outlining pain assessment and management for older people with cognitive impairment. Conclusions This article presents a set of SQIs for the evaluation of performance in caring for older people with cognitive impairment in EDs.

Saudi Arabian adult intensive care unit pressure ulcer incidence and risk factors: A prospective cohort study

The purpose of this study was to identify pressure ulcer (PU) incidence and risk factors that are associated with PU development in patients in two adult intensive care units (ICU) in Saudi Arabia. A prospective cohort study design was used. A total of 84 participants were screened second daily basis until discharge or death, over a consecutive 30-day period, out of which 33 participants with new PUs were identified giving a cumulative hospital-acquired PU incidence of 39·3% (33/84 participants). The incidence of medical devices-related PUs was 8·3% (7/84). Age, length of stay in the ICU, history of cardiovascular disease and kidney disease, infrequent repositioning, time of operation, emergency admission, mechanical ventilation and lower Braden Scale scores independently predicted the development of a PU. According to binary logistic regression analyses, age, longer stay in ICU and infrequent repositioning were significant predictors of all stages of PUs, while the length of stay in the ICU and infrequent repositioning were associated with the development of stages II-IV PUs. In conclusion, PU incidence rate was higher than that reported in other international studies. This indicates that urgent attention is required for PU prevention strategies in this setting.

Redefining dermatologists’ role in skin cancer early detection and follow-up care

Early diagnosis of melanoma leads to the best prognosis for patients and may be more likely achieved when those who are at high risk for melanoma undergo regular and systematic monitoring. However, many people rarely or never see a dermatologist. Risk prediction models (recently reviewed by Usher-Smith et al ) could assist to triage people into preventive care appropriate for their risk profile. Most risk prediction models contain measures of phenotype including skin, eye and hair colour as well as genetic mutations. Almost all also contain the number and size of naevi, as well as the presence of naevi with atypical features which are independently associated with melanoma risk. In the absence of formal population-based screening programs for melanoma in most countries worldwide, people with high risk phenotypes may need to consider regular monitoring or self-monitoring of their naevi , especially since the vast majority of melanomas are found by people themselves or their friend and relatives. Another group of patients that will require regular monitoring are patients who have been successfully treated for their first melanoma, whose risk to develop a second melanoma is greatly increased . In a US study of 89,515 melanoma survivors those with a previous diagnosis of melanoma had a 9-fold increased risk of developing subsequent melanoma compared with the general population, equating to a rate of 3.76 per 1000 person-years, while in an Australian study, risk of subsequent melanoma was 6 per 1000 person-years. Regular follow-up is therefore essential for melanoma survivors, especially during the first few years after initial melanoma diagnosis.

Guidelines for syringe driver management in palliative care

These guidelines are intended to provide clinicians and palliative care services with guidelines to inform practice, the development of policy and procedures, and associated training and education programs in relation to portable subcutaneous infusion device (syringe driver) management.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses

Purpose: Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Methods: Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n=136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. Results: This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified; the first relating to the challenges nurses face in providing care (‘care challenges’), and the second relating to the challenges of providing survivorship care within contemporary health care systems (‘system challenges’). Conclusions: Cancer nurses perceive the nature of haematological cancer and its treatment, and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Implications for Cancer Survivors: Addressing the issues identified will facilitate cancer nurses’ provision of survivorship care, and help address haematological survivors’ needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Survivorship care provision for patients with hematologic malignancies: The quest for quality evidence

This is an editorial that depicts the importance for developing more quality evidence to guide the survivorship care provision for patients with hematologic malignancies. Treatments for hematologic malignancies are often complex and debilitating, with increased risk of immune suppression and infections1. Some patients receive allogeneic stem cell transplantation that often requires in-patient stay of several weeks and life-long medical follow up. In recent years, advances in treatment regimens, and an aging population saw an increasing number of patients living with a hematologic malignancies or surviving curative therapy.2 The increased use of targeted therapies in hematologic malignancies (e.g. rituximab for non-Hodgkin lymphoma, bortezomib in multiple myeloma and imatinib in Chronic Myelogenous Leukemia has also resulted in improved overall survival...