Considering Aboriginal palliative care models: the challenges for mainstream services

This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The "living model" coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government"s National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples" community values, beliefs, cultural/ spiritual rituals, heritage and place.

Implementing novel models of posttreatment care for cancer survivors: Enablers, challenges and recommendations

AIM: The American Society of Clinical Oncology and US Institute of Medicine emphasize the need to trial novel models of posttreatment care, and disseminate findings. In 2011, the Victorian State Government (Australia) established the Victorian Cancer Survivorship Program (VCSP), funding six 2-year demonstration projects, targeting end of initial cancer treatment. Projects considered various models, enrolling people of differing cancer types, age and residential areas. We sought to determine common enablers of success, as well as challenges/barriers. METHODS: Throughout the duration of the projects, a formal "community of practice" met regularly to share experiences. Projects provided regular formal progress reports. An analysis framework was developed to synthesize key themes and identify critical enablers and challenges. Two external reviewers examined final project reports. Discussion with project teams clarified content. RESULTS: Survivors reported interventions to be acceptable, appropriate and effective. Strong clinical leadership was identified as a critical success factor. Workforce education was recognized as important. Partnerships with consumers, primary care and community organizations; risk stratified pathways with rapid re-access to specialist care; and early preparation for survivorship, self-management and shared care models supported positive project outcomes. Tailoring care to individual needs and predicted risks was supported. Challenges included: lack of valid assessment and prediction tools; limited evidence to support novel care models; workforce redesign; and effective engagement with community-based care and issues around survivorship terminology. CONCLUSION: The VCSP project outcomes have added to growing evidence around posttreatment care. Future projects should consider the identified enablers and challenges when designing and implementing survivorship care.

How can we improve models of care in inflammatory bowel disease? An international survey of IBD health professionals.

BACKGROUND AND AIMS: Few studies have specifically examined models of care in IBD. This survey was designed to help gather information from health professionals working in IBD services on current care models, and their views on how to best reshape existing models for IBD care worldwide. METHODS: An online mixed-methods survey was conducted with health professionals caring for IBD patients. Recruitment was conducted using the snowballing technique, where members of professional networks of the investigators were invited to participate. Results of the survey were summarised using descriptive statistics. RESULTS: Of the 135 included respondents, 76 (56%) were female, with a median age of 44 (range: 23-69) years, 50% were GI physicians, 34% nurses, 8% psychologists, 4% dieticians, 2% surgeons, 1% psychiatrists, and 1% physiotherapists. Overall, 73 (54%) respondents considered their IBD service to apply the integrated model of care, and only 5% reported that they worked exclusively using the biomedical care (no recognition of psychosocial factors). The majority of respondents reported including mental health assessment in their standard IBD care (65%), 51% believed that an ideal IBD service should be managed in specialist led clinics, and 64% wanted the service to be publicly funded. Respondents pictured an ideal IBD service as easy-access fully multi-disciplinary, with a significant role for IBD nurses and routine psychological and nutritional assessment and care. CONCLUSIONS: Health care professionals believe that an ideal IBD service should: be fully integrated, involve significant roles of nurses, psychologists and dieticians, run in specialist clinics, be easily accessible to patients and publicly funded.

Economic evaluation of Australian stroke services: a prospective, multicenter study comparing dedicated stroke units with other care modalities

Background and Purpose: Level I evidence from randomized controlled trials demonstrates that the model of hospital care influences stroke outcomes; however, the economic evaluation of such is limited. An economic appraisal of 3 acute stroke care models was facilitated through the Stroke Care Outcomes: Providing Effective Services (SCOPES) study in Melbourne, Australia. The aim was to describe resource use up to 28 weeks poststroke for each model and examine the cost-effectiveness of stroke care units (SCUs). Methods: A prospective, multicenter, cohort study design was used. Costs and outcomes of stroke patients receiving 100% treatment in 1 of 3 inpatient care models (SCUs, mobile service, conventional care) were compared. Health-sector resource use up to 28 weeks was measured in 1999. Outcomes were thorough adherence to a suite of important clinical processes and the number of severe inpatient complications. Results: The sample comprised 395 participants (mean age 73 [SD 14], 77% first-ever strokes, males 53%). When compared with conventional care (n=84), costs for mobile service (n=209) were significantly higher (P=0.024), but borderline for SCU (n=102, P=0.08; $AUD12 251; $AUD15 903; $AUD15 383 respectively). This was primarily explained by the greater use of specialist medical services. The incremental cost-effectiveness of SCUs over conventional care was $AUD9867 per patient achieving thorough adherence to clinical processes and $AUD16 372 per patient with severe complications avoided, based on costs to 28 weeks. Conclusions: Although acute SCU costs are generally higher, they are more cost-effective than either mobile service or conventional care.

Continuity of midwifery care and gestational weight gain in obese women : a randomised controlled trial

Background: The increased prevalence of obesity in pregnant women in Australia and other developed countries is a significant public health concern. Obese women are at increased risk of serious perinatal complications and guidelines recommend weight gain restriction and additional care. There is limited evidence to support the effectiveness of dietary and physical activity lifestyle interventions in preventing adverse perinatal outcomes and new strategies need to be evaluated. The primary aim of this project is to evaluate the effect of continuity of midwifery care on restricting gestational weight gain in obese women to the recommended range. The secondary aims of the study are to assess the impact of continuity of midwifery care on: women’s experience of pregnancy care; women’s satisfaction with care and a range of psychological factors.
Methods/Design: A two arm randomised controlled trial (RCT) will be conducted with primigravid women recruited from maternity services in Victoria, Australia. Participants will be primigravid women, with a BMI≥30 who are less than 17 weeks gestation. Women allocated to the intervention arm will be cared for in a midwifery continuity of care model and receive an informational leaflet on managing weight gain in pregnancy. Women allocated to the control group will receive routine care in addition to the same informational leaflet. Weight gain during pregnancy, standards of care, medical and obstetric information will be extracted from medical records. Data collected at recruitment (self administered survey) and at 36 weeks by postal survey will include sociodemographic information and the use of validated scales to measure secondary outcomes.
Discussion: Continuity of midwifery care models are well aligned with current Victorian, Australian and many international government policies on maternity care. Increasingly, midwifery continuity models of care are being introduced in low risk maternity care, and information on their application in high risk populations is required. There is an identified need to trial alternative antenatal interventions to reduce perinatal risk factors for women who are obese and the findings from this project may have application in other maternity services. In addition this study will inform a larger trial that will focus on birth and postnatal outcomes.

A discrete choice experiment to examine the preferences of patients with cancer and their willingness to pay for different types of health care appointments

BACKGROUND: This study sought to understand the preferences of patients with cancer and the trade-offs between appointment attributes using discrete choice experiment (DCE). METHODS AND STUDY DESIGN: Patients with cancer at 3 hospitals completed a self-administered DCE. Each scenario described 6 attributes: expertise of health care professionals (HCPs), familiarity of doctors with patients' medical history, waiting time, accompaniment by family/friends, travel time, and out-of-pocket costs. Patient preferences were estimated using logistic regression. Willingness to pay (WTP) estimates were derived from regression coefficients. RESULTS: Of 512 patients contacted, 185 returned the questionnaire. The mean age was 61 years, and 60% of respondents were female. The mean time since cancer diagnosis was 34 months, 90% had received treatment; and 61% had early-stage disease. The most important attributes were expertise and familiarity of doctors with patients' medical history; distance traveled was least likely to influence patient preferences. The WTP analysis estimated that patients were willing to pay $680 (95% CI, 470-891) for an appointment with a specialist, $571 (95% CI, 388-754) for doctors familiar with their history, $422 (95% CI, 262-582) for shorter waiting times, $399 (95% CI, 249-549) to be accompanied by family/friends, and $301 (95% CI, 162-441) for shorter traveling times. Male patients had a stronger preference for accompaniment by family/friends. The expertise of HCP was the most important attribute for patients regardless of geographic remoteness. CONCLUSIONS: Our study can assist the development of patient-centered health care models that improve patient access to experienced HCPs, support the role of primary care providers during the cancer journey, and educate patients about the roles of non-oncology HCPs to cope with increasing demand for cancer care.

A randomized controlled trial of a nurse-led supportive care package (SurvivorCare) for survivors of colorectal cancer

INTRODUCTION: Colorectal cancer (CRC) and its treatments can cause distressing sequelae. We conducted a multicenter randomized controlled trial aiming to improve psychological distress, supportive care needs (SCNs), and quality of life (QOL) of patients with CRC. The intervention, called SurvivorCare (SC), comprised educational materials, needs assessment, survivorship care plan, end-of-treatment session, and three follow-up telephone calls.

METHODS: At the end of treatment for stage I-III CRC, eligible patients were randomized 1:1 to usual care (UC) or to UC plus SC. Distress (Brief Symptom Inventory 18), SCNs (Cancer Survivors' Unmet Needs measure), and QOL (European Organization for Research and Treatment of Cancer [EORTC] QOL questionnaires C30 and EORTC CRC module CR29) were assessed at baseline and at 2 and 6 months (follow-up 1 [FU1] and FU2, respectively). The primary hypothesis was that SC would have a beneficial effect on distress at FU1. The secondary hypotheses were that SC would have a beneficial effect on (a) SCN and QOL at FU1 and on (b) distress, SCNs, and QOL at FU2. A total of 15 items assessed experience of care.

RESULTS: Of 221 patients randomly assigned, 4 were ineligible for the study and 1 was lost to FU, leaving 110 in the UC group and 106 in the SC group. Patients' characteristics included the following: median age, 64 years; men, 52%; colon cancer, 56%; rectal cancer, 35%; overlapping sites of disease, 10%; stage I disease, 7%; stage II, 22%; stage III, 71%. Baseline distress and QOL scores were similar to population norms. Between-group differences in distress at FU1 (primary outcome) and at FU2, and SCNs and QOL at FU1 and FU2 were small and nonsignificant. Patients in the SC group were more satisfied with survivorship care than those in the UC group (significant differences on 10 of 15 items).

CONCLUSION: The addition of SC to UC did not have a beneficial effect on distress, SCNs, or QOL outcomes, but patients in the SC group were more satisfied with care.

IMPLICATIONS FOR PRACTICE: Some survivors of colorectal cancer report distressing effects after completing treatment. Strategies to identify and respond to survivors' issues are needed. In a randomized controlled trial, the addition of a nurse-led supportive care package (SurvivorCare) to usual posttreatment care did not impact survivors' distress, quality of life, or unmet needs. However, patients receiving the SurvivorCare intervention were more satisfied with survivorship care. Factors for consideration in the design of subsequent studies are discussed.

Relationship between health-related quality of life, comorbidities and acute health care utilisation, in adults with chronic conditions

Background: There is increased interest in developing multidisciplinary ambulatory care models of service delivery to manage patients with complex chronic diseases. These programs are expensive and given limited resources it is important that care is targeted effectively. One potential screening strategy is to identify individuals who report the greatest decrement in health related quality of life (HRQoL) and thus greater need. The aim of this study was to explore the relationship between HRQoL, comorbid conditions and acute health care utilisation. Methods: A prospective, longitudinal cohort design was used to evaluate the impact of HRQoL on acute care utilisation rates over three-years of follow-up. Participants were enrolled in chronic disease management programs run by a metropolitan health service in Australia. Baseline data was collected from 2007-2009 and follow-up data until 2012. Administrative data was used to classify patients' primary reasons for enrolment, number of comorbidities (Charlson Score) and presentations to acute care. At enrolment, HRQoL was measured using the Assessment of Quality of Life (AQoL) instrument, for analysis AQoL scores were dichotomised at two standard deviations below the population norm. Results: There were 1999 participants (54% male) with a mean age of 63years (range 18-101), enrolled in the study. Participants' primary health conditions at enrolment were: diabetes 915 (46%), chronic respiratory disease 463 (23%), cardiac disease 260 (13%), peripheral vascular disease, and 181 (9%) and aged care 180 (9%). At 1-year multivariate logistic regression models demonstrated that AQOL utility score was not predictive of acute care presentations after adjusting for comorbidities. Over 3-years an AQoL utility score in the lowest quartile was predictive of both ED presentation (OR 1.58, 95% CI, 1.16-2.13, p=0.003) and admissions (OR 1.67, 95% CI.1.21 to 2.30, p=0.002) after adjusting for differences in age and comorbidities. Conclusion: This study found that both HRQoL and comorbidities were predictive of subsequent acute care attendance over 3-years of follow-up. At 1-year, comorbidities was a better predictor of acute care representation than HRQoL. To maximise benefits, programs should initially focus on medical disease management, but subsequently switch to strategies that enhance health independence and raise HRQoL.

First, create goodwill : The ten commandments of social change - the case of maternity services

Professional workers - midwives and obstetricians - within 15 caseload maternity units were interviewed to evaluate their response to collaborative care models.  The evidence shows that new discourses and models have the potential to disrupt the 'silo effect' of old professional boundaries and to facilitate a realignment between midwives and obstetricians along more egalitarian lines.  However change is not automatic. Among other conditions, a coalition of 'change champions' is necessary to build cultures of respect and recognition among all staff.

Views of women and health professionals on mHealth lifestyle interventions in pregnancy: a qualitative investigation

BACKGROUND: Evidence suggests that women are failing to meet guidelines for nutrition, physical activity, and weight gain during pregnancy. Interventions to promote a healthy lifestyle in pregnancy demonstrate mixed results and many are time and resource intensive. mHealth-delivered interventions offer an opportunity to provide trusted source information in a timely and cost-effective manner. Studies regarding women's and health professionals' views of mHealth in antenatal care are limited.

OBJECTIVE: This study aimed to explore women's and health professionals' views regarding mHealth information sources and interventions to assist women to eat well, be physically active, and gain healthy amounts of weight in pregnancy.

METHODS: A descriptive qualitative research approach employed focus groups and in-depth interviews with 15 pregnant or postpartum women and 12 in-depth interviews with health professionals including two from each category: obstetricians, general practitioners, midwives, dietitians, physiotherapists, and community pharmacists. All interviews were transcribed verbatim and thematically analyzed.

RESULTS: Women uniformly embraced the concept of mHealth information sources and interventions in antenatal care and saw them as central to information acquisition and ideally incorporated into future antenatal care processes. Health professionals exhibited varied views perceiving mHealth as an inevitable, often parallel, service rather than one integrated into the care model. Four key themes emerged: engagement, risk perception, responsibility, and functionality. Women saw their ability to access mHealth elements as a way to self-manage or control information acquisition that was unavailable in traditional care models and information sources. The emergence of technology was perceived by some health professionals to have shifted control of information from trusted sources, such as health professionals and health organizations, to nontrusted sources. Some health professionals were concerned about the medicolegal risks of mHealth (incorrect or harmful information and privacy concerns), while others acknowledged that mHealth was feasible if inherent risks were addressed. Across both groups, there was uncertainty as to who should be responsible for ensuring high-quality mHealth. The absence of a key pregnancy or women's advocacy group, lack of health funds for technologies, and the perceived inability of maternity hospitals to embrace technology were seen to be key barriers to provision. Women consistently identified the functionality of mHealth as adding value to antenatal care models. For some health professionals, lack of familiarity with and fear of mHealth limited their engagement with and comprehension of the capacity of new technologies to support antenatal care.

CONCLUSIONS: Women exhibited positive views regarding mHealth for the promotion of a healthy lifestyle in antenatal care. Conversely, health professionals expressed a much wider variation in attitudes and were more able to identify potential risks and barriers to development and implementation. This study contributes to the understanding of the opportunities and challenges in developing mHealth lifestyle interventions in antenatal care.

Discrete choice experiment examining the preferences of people with cancer

 Our study suggest that patient-centred health care models should focus on improving patient access to health care, supporting the role of carers and non-oncology health care providers as well as providing education about health care resources.

Models for reform : the directors’ duty of care in a modern commercial world

The Australian responses to corporate collapses in the modern commercial world have been
implemented at both judicial and legislative levels over a period of decades. South Africa has lagged behind the reform process, only recently reviewing its company laws with a view to legislatively incorporating, inter alia, its directors’ duties. The consequence of such review of the duty of care is found in subsection 76(3)(c) of the Companies Act 71 of 2008. This article critically evaluates the existing South African common law and the new legislative directors’ duty of care in light of the equivalent duties in Australia and the United States. The analysis ultimately aims at determining whether the approach taken in any of these jurisdictions provides useful guidance in regard to reform options for the duty of care. While the Companies Act contains features that are preferable to the Australian Corporations Act 2001, the impact of the Companies Act on crucial features, such as the objectivity of the duty of care, is unclear and will have to await judicial review. It is concluded that while the South African measures at times echo Australian law in a positive manner, the Australian legislative regime is not without legitimate criticism as it can be unnecessarily complicated. Ultimately it is the United States and Australian common law duty of care that provides the best model for legislative reform.