Lisa J. Whop

Teleoncology for Indigenous patients: The responses of patients and health workers

PROBLEM Townsville Cancer Centre provides video-consultation (VC) services to patients in rural/remote regions of North Queensland in order to improve access to specialist cancer care. The experience and responses of indigenous patients using this service have not been studied. Our objective is to assess the level of satisfaction and the responses of Indigenous patients, their families and health workers (HWs) to VC and such teleoncology service. DESIGN Descriptive study, using semistructured interviews. SETTING Tertiary referral centre (Townsville Cancer Centre) and various rural and remote towns in Queensland. KEY MEASURES FOR IMPROVEMENT Satisfaction levels of Indigenous patients, their family members and Indigenous HWs with various aspects of the teleoncology service. LESSONS LEARNT Our evaluation suggests that teleoncology is an acceptable model of care for Indigenous patients, with high levels of satisfaction expressed from patients, families and HWs. Health professionals involved with providing this service need to be adaptive to the needs of individual patients and local communities in order to provide culturally appropriate care. Formal skills training for staff, effective communication between specialist and local HWs, and informed consent procedures are essential to maintain safety of practices. Strategies for change are: • Mandatory informed consent procedure for all patients offered with VC. • Formalised competency training for staff in skills essential to maintain safe practices in teleoncology. • Clear clinical documentation to facilitate improved communication in patient management between medical staff at main centre and distant sites. • Further efforts in promotion, education and support for staff to participate in telemedicine.

The first comprehensive report on Indigenous Australian women's inequalities in cervical screening: A retrospective registry cohort study in Queensland, Australia (2000‐2011)

The Australian National Cervical Screening Program, introduced more than 20 years ago, does not record the Indigenous status of screening participants. This article reports the first population‐based estimates of participation in cervical screening for Indigenous and non‐Indigenous Australian women.

Health service utilization by indigenous cancer patients in Queensland: a descriptive study

IntroductionIndigenous Australians experience more aggressive cancers and higher cancer mortality rates than other Australians. Cancer patients undergoing treatment are likely to access health services (e.g. social worker, cancer helpline, pain management services). To date Indigenous cancer patients’ use of these services is limited. This paper describes the use of health services by Indigenous cancer patients.MethodsIndigenous cancer patients receiving treatment were recruited at four major Queensland public hospitals (Royal Brisbane Women’s Hospital, Princess Alexandra, Cairns Base Hospital and Townsville Hospital). Participants were invited to complete a structured questionnaire during a face-to-face interview which sought information about their use of community and allied health services.ResultsOf the 157 patients interviewed most were women (54.1%), of Aboriginal descent (73.9%), lived outer regional areas (40.1%) and had a mean age of 52.2 years. The most frequent cancer types were breast cancer (22.3%), blood related (14.0%), lung (12.1%) and gastroenterological (10.8%). More than half of the participants reported using at least one of the ‘Indigenous Health Worker/Services’ (76.4%), ‘Allied Health Workers/Services’ (72.6%) and ‘Information Sources’ (70.7%). Younger participants 19–39 years were more likely to use information sources (81.0%) than older participants who more commonly used community services (48.8%). The cancer patients used a median of three health services groups while receiving cancer treatment.ConclusionsIndigenous cancer patients used a range of health services whilst receiving treatment. Indigenous Health Workers/Services and Allied Health Workers/Services were the most commonly used services. However, there is a need for further systematic investigation into the health service utilization by Indigenous cancer patients.

Cancer outcomes for Aboriginal and Torres Strait Islander Australians in rural and remote areas.

OBJECTIVE To examine the association between residential remoteness and stage of cancer at diagnosis, treatment uptake, and survival within the Australian Indigenous population. DESIGN Systematic review and matched retrospective cohort study. SETTING Australia. PARTICIPANTS Systematic review: published papers that included a comparison of cancer stage at diagnosis, treatment uptake, mortality and/or survival for Indigenous people across remoteness categories were identified (n = 181). Fifteen papers (13 studies) were included in the review. Original analyses: new analyses were conducted using data from the Queensland Indigenous Cancer Study (QICS) comparing cancer stage at diagnosis, treatment uptake, and survival for Indigenous cancer patients living in rural/remote areas (n = 627, 66%) and urban areas (n = 329, 34%). MAIN OUTCOME MEASURES Systematic review: Papers were included if there were related to stage of disease at diagnosis, treatment, mortality and survival of cancer. Restrictions were not placed on the outcome measures reported (e.g. standardised mortality ratios versus crude mortality rates). Original analyses: Odds ratios (OR, 95%CI) were used to compare stage of disease and treatment uptake between the two remoteness groups. Treatment uptake (treated/not treated) was analysed using logistic regression analysis. Survival was analysed using Cox proportional hazards regression. The final multivariate models included stage of cancer at diagnosis and area-level socioeconomic status (SEIFA). RESULTS Existing evidence of variation in cancer outcomes for Indigenous people in remote compared with metropolitan areas is limited. While no previous studies have reported on differences in cancer stage and treatment uptake by remoteness within the Indigenous population, the available evidence suggests Indigenous cancer patients are less likely to survive their cancer the further they live from urban centres. New analysis of QICS data indicates that Indigenous cancer patients in rural/remote Queensland were less likely to be diagnosed with localised disease and less likely to receive treatment for their cancer compared to their urban counterparts. CONCLUSION More research is needed to fully understand geographic differentials in cancer outcomes within the Indigenous population. Knowing how geographical location interacts with Indigenous status can help to identify ways of improving cancer outcomes for Indigenous Australians.

How well is the National Cervical Screening Program performing for Indigenous Australian women? Why we don't really know, and what we can and should do about it

Since its inception in 1991, Australias organised approach to cervical screening, the National Cervical Screening Program (NCSP), has seen a 50% reduction in both incidence and mortality from cervical cancer in Australia. However, Indigenous Australian women continue to experience a disproportionately higher burden of cervical cancer. No national data on screening participation of Indigenous women currently exist, in large part because pathology forms, the primary source of data for Pap Test Registers (PTR), do not record Indigenous status. While including Indigenous status on pathology forms is the obvious solution for producing essential information about cervical screening of Indigenous women, this will require an appropriate consultative process and it will be many years before reliable data are available. One interim option being explored is the feasibility of linking the PTR to another data source which includes Indigenous status, such as hospital data. However, despite its promise, there remain major impediments to obtaining useful linked data in Australia, and it continues to be unclear whether such an approach is viable for routine reporting. If we are to understand and improve cervical screening participation and outcomes for Indigenous women in the foreseeable future, Australia needs to act now to include Indigenous status in pathology forms and (subsequently) PTRs.

Using probabilistic record linkage methods to identify Australian Indigenous women on the Queensland Pap Smear Register: the National Indigenous Cervical Screening Project

Objective To evaluate the feasibility and reliability of record linkage of existing population-based data sets to determine Indigenous status among women receiving Pap smears. This method may allow for the first ever population measure of Australian Indigenous womens cervical screening participation rates. Setting/participants A linked data set of women aged 20–69 in the Queensland Pap Smear Register (PSR; 1999–2011) and Queensland Cancer Registry (QCR; 1997–2010) formed the Initial Study Cohort. Two extracts (1995–2011) were taken from Queensland public hospitals data (Queensland Hospital Admitted Patient Data Collection, QHAPDC) for women, aged 20–69, who had ever been identified as Indigenous (extract 1) and had a diagnosis or procedure code relating to cervical cancer (extract 2). The Initial Study Cohort was linked to extract 1, and women with cervical cancer in the initial cohort were linked to extract 2. Outcome measures The proportion of women in the Initial Cohort who linked with the extracts (true -pairs) is reported, as well as the proportion of potential pairs that required clerical review. After assigning Indigenous status from QHAPDC to the PSR, the proportion of women identified as Indigenous was calculated using 4 algorithms, and compared. Results There were 28 872 women (2.1%) from the Initial Study Cohort who matched to an ever Indigenous record in extract 1 (n=76 831). Women with cervical cancer in the Initial Study Cohort linked to 1385 (71%) records in extract 2. The proportion of Indigenous women ranged from 2.00% to 2.08% when using different algorithms to define Indigenous status. The Final Study Cohort included 1 372 823 women (PSR n=1 374 401; QCR n=1955), and 5 062 118 records. Conclusions Indigenous status in Queensland cervical screening data was successfully ascertained through record linkage, allowing for the crucial assessment of the current cervical screening programme for Indigenous women. Our study highlights the need to include Indigenous status on Pap smear request and report forms in any renewed and redesigned cervical screening programme in Australia.

“You’re not like other black people”

The Medical Journal of Australia ISSN: 0025729X 5 September 2011 195 5 292-293 ©The Medical Journal of Australia 2011 www.mja.com.au Ross Ingram Memorial Essay Competition and her family were facing. She told me she had to l her community, on he own, to go to two different ci for chemotherapy and radiotherapy when she was fir diagnosed. The do tor at the ocal hospital in their community “didn’t do that much” even when the pat “knew it came back”. When the doctor did do someth he said, “Don’t like the look of that”. The most wa att sp not re I s raised by my mother with my two older sisters and ended the local state schools, where I did it all — ort, music, even public speaking competitions. I’m ally that different, although I do remember clearly being told by some of the other kids, “You’re not like other black people”. I find that comments like this are made more commonly than they should be. They are generally unsettling and, ultimately, amusing for a number of reasons. What is it about me that was different to “those other black people” that I would stand out? My education is unexceptional in modern Australia: 12 years of school followed by an undergraduate degree in medical science. I have recently completed the Master of Applied Epidemiology through the Australian National University, which has started me on a career in health research. Why should anyone regard this as “different”? Many times when I was starting out in research I felt a deep sense of obligation to work in Aboriginal and Torres Strait Islander (hereafter respectfully referred to as Indigenous) health. I thought my career would only ever be in Indigenous health or involve Indigenous “issues”, and my growing expertise would only ever be appreciated in that arena. I do feel compelled to be somewhere at the forefront of Indigenous health research trying to rectify the history of colonisation that, let’s face it, is always the crux of our peoples’ issues. Over the past few years I have been involved mainly in cancer research projects. Cancer provides a typical example of the inequity experienced by Indigenous peoples. Compared with non-Indigenous Australians, our cancer incidence rate is similar, if not lower, for all cancers combined,1-3 and yet our mortality rate is estimated to be 50% higher for many cancers.4 Our cancer patients have more comorbid disease;5 their cancer is more advanced when diagnosed3,5,6 and they are less likely to take up and complete treatment.5 These factors contribute to their poorer survival, but they do not fully explain the disparity. This disparity is almost absurd in our modern times but, sadly, is our country’s reality. The most profound moment of my career so far took place in a small remote community. I had the privilege of conducting an interview with an Indigenous cancer patient who was receiving palliative care. I had an almost out-of-body experience as I sat intently listening to this person share her cancer journey. As a researcher and as an Indigenous person I was powerfully moved by her story, her family history and the circumstance of what she eave ties st