To identify factors that may systematically reduce opportunities for Aboriginal and Torres Strait Islander Australians to participate in cancer clinical trials.
Analysis of online documents from the ...Australia and New Zealand Clinical Trials Registry for cancer treatment trials (Phase 3, 4 or Not Applicable) with at least one Australian site, registered in 2014–2018.
Among 365 eligible trials, most (89%) had sites only in major cities/inner regional areas, but 39% of Aboriginal and Torres Strait Islander Australians live outside these areas. Seven cancer types accounted for 58% of cancers among Aboriginal and Torres Strait Islander people, but only 46% of trials addressed these cancers. Most trials specified exclusions relating to comorbidities/health status. A substantial minority of trials (38%) explicitly referred to investigator opinion/judgment as a relevant determinant of patient eligibility.
Aboriginal and Torres Strait Islander patients appear to have a reduced opportunity to participate in trials because of where they live, their type of cancer and their general health status, as well as for less transparent reasons relating to investigator judgment.
Greater transparency and greater scrutiny of barriers to trial participation for Aboriginal and Torres Strait Islander Australians are needed to ensure equitable access.
Abstract
Background
Rates of end-stage kidney disease in Australia are highest in the Northern Territory (NT), with the burden of disease heaviest in remote areas. However, the high cost of ...delivering dialysis services in remote areas has resulted in centralisation, requiring many people to relocate for treatment. Patients argue that treatment closer to home improves health outcomes and reduces downstream healthcare use. Existing dialysis cost studies have not compared total health care costs associated with treatment in different locations.
Objective
To estimate and compare, from a payer perspective, the observed health service costs (all cause hospital admissions, emergency department presentations and maintenance dialysis) associated with different dialysis models in urban, rural and remote locations.
Methods
Using cost weights attributed to diagnostic codes in the NT Department of Health’s hospital admission data set (2008–2014), we calculated the mean (SD) total annual health service costs by dialysis model for 995 dialysis patients. Generalized linear modeling with bootstrapping tested the marginal cost differences between different explanatory variables to estimate ‘best casemix’/‘worst casemix’ cost scenarios.
Results
The mean annual patient hospital expenditure was highest for urban models at $97 928 (SD $21 261) and $43 440 (SD $5 048) and lowest for remote at $19 584 (SD $4 394). When combined with the observed maintenance dialysis costs, expenditure was the highest for urban models at $148 510 (SD $19 774). The incremental cost increase of dialysing in an urban area, compared with a rural area, for a relocated person from a remote area, was $5 648 more and increased further for those from remote and very remote areas to $10 785 and $15 118 respectively.
Conclusions
This study demonstrates that dialysis treatment in urban areas for relocated people has health and cost implications that maybe greater than the cost of remote service delivery. The study emphasises the importance of considering all health service costs and cost consequences of service delivery models.
Key points for decision makers
Relocation for dialysis treatment has serious health and economic consequences. Relocated people have low dialysis attendance and high hospital costs in urban areas. While remote dialysis service models are more expensive than urban models, the comparative cost differences are significantly reduced when all health service costs are included. The delivery of equitable and accessible dialysis service models requires a holistic approach that incorporates the needs of the patient; hence dialysis cost studies must consider the full range of cost impacts beyond the dialysis treatments alone.
To document the prevalence of polycystic ovary syndrome (PCOS) and its associated characteristics in a sample of urban Indigenous women.
A cross-sectional survey of Indigenous women, including ...biochemical and anthropometric assessments. PCOS was assessed using the National Institutes of Health 1990 criteria.
Indigenous women, aged 15-44 years, living in a defined area in and around Darwin, Northern Territory, Australia, September 2003-March 2005.
Proportion of participants with PCOS overall and measures of obesity.
Among 248 women eligible for assessment, the proportion who had PCOS was 15.3% (95% CI, 10.8%-19.8%). The proportion with PCOS was similar across age groups, but was significantly higher (P = 0.001) in women with a body mass index (BMI) of ≥ 30.0 kg/m(2) (30.5%) compared with women with a BMI of 25.0-29.9 kg/m(2) (8.2%) or a BMI of < 25.0 kg/m(2) (7.0%).
A high proportion of these Indigenous women had PCOS. The significant relationship with obesity gives a strong rationale for screening for PCOS during routine care of Indigenous women who are obese and of reproductive age.
Understandings of health and wellbeing are culturally bound. Many Aboriginal and Torres Strait Islander people perceive wellbeing and quality of life (QOL) differently from the Western biomedical ...models of health underpinning existing QOL instruments. Any instrument to measure the wellbeing of Aboriginal and Torres Strait Islander people should be culturally appropriate and safe, include relevant dimensions, and be informed by their own values and preferences. Existing QOL instruments do not meet these standards. This study will generate a new preference-based wellbeing measure, WM2Adults, for Aboriginal and Torres Strait Islander adults, underpinned by their values and preferences.
A mixed methods approach will be used; we will employ decolonising methodologies, privilege Aboriginal and Torres Strait Islander voices and perspectives, and adopt a strengths-based approach rather than a deficit lens. Yarning Circles will be conducted with Aboriginal and Torres Strait Islander people across Australia. A candidate item pool will be developed from these data, on which psychometric analysis and validity testing will be undertaken to develop a descriptive system. Following finalisation of the descriptive system, wellbeing states will be valued using a quantitative preference-based approach (best-worst scaling) with a diverse sample of Aboriginal and Torres Strait Islander adults (n = 1000). A multinomial (conditional) logit framework will be used to analyse responses and generate a scoring algorithm for the new preference-based WM2Adults measure.
The new wellbeing measure will have wide applicability in assessing the effectiveness and cost-effectiveness of new programs and services for Aboriginal and Torres Strait Islander people. Results will be disseminated through journals, conferences and policy forums, and will be shared with Aboriginal and Torres Strait Islander communities, organisations and research participants.
The purpose of this investigation was to examine social desirability and social approval as sources of error in three self-reported physical activity assessments using objective measures of physical ...activity as reference measures. In 1997, women (n = 81) living in Worcester, Massachusetts, completed doubly labeled water measurements and wore an activity monitor for 14 days. They also completed seven interviewer-administered 24-hour physical activity recalls (PARs) and two different self-administered 7-day PARs. Measures of the personality traits “social desirability” and “social approval” were regressed on 1) the difference between physical activity energy expenditure estimated from doubly labeled water and each physical activity assessment instrument and 2) the difference between monitor-derived physical activity duration and each instrument. Social desirability was associated with overreporting of activity, resulting in overestimation of physical activity energy expenditure by 0.65 kcal/kg/day on the second 7-day PAR (95% confidence interval: 0.06, 1.25) and overestimation of activity durations by 4.15–11.30 minutes/day (both 7-day PARs). Social approval was weakly associated with underestimation of physical activity on the 24-hour PAR (–0.15 kcal/kg/day, 95% confidence interval: –0.30, 0.005). Body size was not associated with reporting bias in this study. The authors conclude that social desirability and social approval may influence self-reported physical activity on some survey instruments.
Aboriginal and Torres Strait Islander (collectively, Indigenous Australian) women experience a higher burden of cervical cancer than other women. The National Cervical Screening Program (NCSP) is ...failing to meet the needs of Indigenous Australian women, resulting in many women not regularly participating in cervical screening. However, one third of Indigenous Australian women do participate in cervical screening. The reasons that some women in this population commence and continue to screen remain unheard but could provide insights to support women who currently do not participate. We aimed to describe Indigenous Australian women's experiences and views of participation in cervical screening by yarning (a culturally-appropriate interview technique) with 50 Indigenous Australian women aged 25-70 years who had completed cervical screening in the past five years, recruited via Primary Health Care Centres (PHCCs) from three jurisdictions. Aboriginal or Torres Strait Islander women researchers conducted the interviews. Thematic analysis identified six themes: screening as a means of staying strong and in control; overcoming fears, shame, and negative experiences of screening; needing to talk openly about screening; the value of trusting relationships with screening providers; logistical barriers; and overcoming privacy concerns for women employed at PHCCs. Despite describing screening as shameful, invasive, and uncomfortable, women perceived it as a way of staying healthy and exerting control over their health. This ultimately supported their participation and a sense of empowerment. Women valued open discussion about screening and strong relationships with health providers. We identified logistical barriers and specific barriers faced by women employed at PHCCs. This study is strengthened by a research approach that centred Indigenous Australian women's voices. Understanding the experiences of Indigenous Australian women who participate in screening will help screening providers support women to start and continue to screen regularly. Recommendations for practice are provided.
Indigenous Australians are known to be at greater risk of morbidity and mortality from mental health related conditions, but most available data relate to the use of mental health services, and ...little is known about other aspects of social and emotional wellbeing. Using the first available nationally representative data, we examined the prevalence and patterning of psychological distress among Indigenous Australian adults and compared these with corresponding data from the non-Indigenous population.
The analysis used weighted data on psychological distress, as measured by a modified Kessler Psychological Distress score (K5), and a range of socio-demographic measures for 5,417 Indigenous and 15,432 non-Indigenous adults aged 18-64 years from two nationally representative surveys. Very high psychological distress (VHPD) was defined as a K5 score ≥ 15 (possible range = 5-25).
Indigenous adults were about three times more likely than non-Indigenous adults to be classified with VHPD: 14.5% (95% confidence interval (CI) 12.9-16.0%) versus 5.5% (95% CI 5.0-5.9%). After adjusting for age, most socio-demographic variables were significantly associated with VHPD in both populations, although the relative odds were generally larger among non-Indigenous people. Indigenous people in remote areas had a lower prevalence of VHPD than their non-remote counterparts, and only marital status, main language, and food insecurity were significantly associated with VHPD in remote areas.
Higher absolute levels of VHPD combined with smaller socio-demographic gradients in the Indigenous population suggest the importance of risk factors such as interpersonal racism, marginalization and dispossession, chronic stress and exposure to violence that are experienced by Indigenous Australians with common and/or cross-cutting effects across the socioeconomic spectrum. The lower prevalence of VHPD and lack of association with many socio-demographic variables in remote areas suggests either that the instrument may be less valid for Indigenous people living in remote areas or that living in an Indigenous majority environment (such as exists in most remote communities) may mitigate the risk of psychological distress to some degree.
Measurement of patients' healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients ...and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers.
A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified.
No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics 'partially' captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable.
Existing tools are likely to miss key aspects of Indigenous peoples' experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.
Disparities in cancer outcomes amongst Indigenous Australians reflect a pattern of reduced access to and engagement with health services. A growing emphasis on patient-centred care has increased ...efforts to measure patient experiences, but it is unclear whether existing approaches: a) assess the most critical aspects of care that shape the experiences of Indigenous people with cancer; and b) facilitate the engagement and participation of Indigenous people with the measurement of care experiences.
Two rounds of semi-structured interviews and focus groups were used to elicit stakeholders' views on priorities for measuring the cancer care experiences of Indigenous cancer patients and on the acceptability of various methods for capturing such information. Participants included Indigenous people affected by cancer (n = 17), health professionals (n = 28) and individuals in both groups (n = 7). Recruitment occurred through a national web-based network and through four cancer services in urban and regional areas in three jurisdictions across Australia.
Several aspects of cancer care were identified as critical in shaping Indigenous patients' experiences. Key themes included: feeling safe in the system; importance of Indigenous staff; barriers to care; the role of family and friends; effective communication and education; and coordination of care and transition between services. Those participants affected by carers' wellbeing and palliative care strongly advocated for the importance of these topics. Participants expressed support for a face-to-face interview with a trusted person as the most appropriate means of collecting cancer care experience information.
While existing experience measurement tools would partially capture some important aspects of care, other critical areas would likely be missed. Appropriate tools and approaches, developed by and with Indigenous people, are urgently needed to determine the extent to which health services are meeting the needs of Indigenous people with cancer, and to identify areas for action to improve these services.
Little is known about the relationship between socioeconomic status (SES) and cardiovascular disease (CVD) among Indigenous Australians, or whether any such relationship is similar to that in ...non-Indigenous Australians.
Weighted data on self-reported CVD and several SES measures were analyzed for 5,417 Indigenous and 15,432 non-Indigenous adults aged 18-64 years from two nationally representative surveys conducted in parallel by the Australian Bureau of Statistics in 2004-05.
After adjusting for age and sex, self-reported CVD prevalence was generally higher among those of lower SES in both the Indigenous and non-Indigenous populations. The relative odds of self-reported CVD were generally similar in the two populations. For example, the relative odds of self-reported CVD for those who did not complete Year 10 (versus those who did) was 1.4 (95% confidence interval CI: 1.1-1.8) among Indigenous people and 1.3 (95% CI: 1.2-1.5) among non-Indigenous people. However, Indigenous people generally had higher self-reported CVD levels than non-Indigenous people of the same age and SES group. Although smoking history varied by SES, smoking did not explain the observed relationships between SES and self-reported CVD.
Socioeconomic disparities in self-reported CVD among Indigenous Australians appear similar in relative terms to those seen in non-Indigenous Australians, but absolute differences remain. As with other population groups, the socioeconomic heterogeneity of the Indigenous population must be considered in developing and implementing programs to promote health and prevent illness. In addition, factors that operate across the SES spectrum, such as racism, stress, dispossession, and grief, must also be addressed to reduce the burden of CVD.
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