Christina M. Bernardes

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.

Use of Traditional Indigenous Medicine and Complementary Medicine Among Indigenous Cancer Patients in Queensland, Australia

Background. The cancer toll on Indigenous Australians is alarming with overall cancer incidence and mortality rates higher and the 5-year survival rate lower for Indigenous Australians compared with non-Indigenous Australians. Meanwhile, a range of approaches to health and illness—including both complementary and alternative medicine (CAM) and traditional Indigenous medicine (TM)—are used by cancer patients. Little work has focused on Indigenous cancer patients with regard to CAM/TM use. This article reports findings from the first examination of the prevalence and profile of TM/CAM use and users among Indigenous Australians with cancer. Methods. A structured questionnaire was administered via face-to-face interviews to 248 Indigenous Australian cancer patients diagnosed with a range of cancer types. All received treatment and were recruited from 1 of 4 large hospitals located in Queensland, Australia. Results. A substantial percentage (18.7%) of Indigenous cancer patients use at least one TM/CAM for support with their care, including traditional Indigenous therapy use (2.8%), visiting a traditional Indigenous practitioner (2.8%), CAM use (10.7%), visiting a CAM practitioner (2.4%), and attending relaxation/meditation classes (4.0%). Having a higher level of educational attainment was positively associated with CAM practitioner consultations (P = .015). Women with breast cancer were more likely to attend relaxation/meditation classes (P = .019). Men with genital organ cancer were more likely to use traditional Indigenous therapies (P = .017) and/or CAM (P = .002). Conclusion. A substantial percentage of Indigenous Australians reported using TM/CAM for their cancer care, and there is a need to expand examination of this area of health care using large-scale studies focusing on in-depth specific cancer(s).

Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors

PurposeThe purpose of this study was to explore Indigenous Australian cancer survivors’ perspectives of follow-up cancer care and management..MethodsThis is a qualitative study employing individual interviews with 21 Indigenous cancer survivors (13 females, 8 males) recruited from a rural primary health service and large tertiary hospital in Brisbane, Queensland. Yarning methods were used to conduct semi-structured interviews. Yarning is a culturally appropriate, informal conversational process emphasising the importance of storytelling.ResultsFindings describe a range of ways in which follow-up cancer care is experienced with four major categories elucidated, namely: links to tertiary health services, links to primary health services, communication between tertiary and primary health services, and lost in transition. Both positive and negative experiences were described; however, the importance of timely and informative discharge information, continuity of care, good communication between tertiary and primary health services, and strong therapeutic relationships were salient issues raised by participants.ConclusionsThese findings highlight the importance of establishing strong therapeutic relationships between patients and tertiary and primary health professionals. Also important for survivorship is provision of discharge summaries or care plans at discharge for survivors and general practitioners as well as access to a range of allied health services. Alternative means for follow-up could be investigated for regional and rural survivors to facilitate convenient and cost-effective follow-up care. Finally, provision of responsive and flexible follow-up care to cater for the diverse range of needs and preferences of cancer survivors is required. A patient navigator available across the cancer continuum could go some way to addressing this.

Indigenous Australians with non–small cell lung cancer or cervical cancer receive suboptimal treatment

Lung cancer and cervical cancer are higher in incidence for Indigenous Australians and survival is worse compared with non‐Indigenous Australians. Here we aim to determine if being Indigenous and/or other factors are associated with patients receiving “suboptimal treatment” compared to “optimal treatment” according to clinical guidelines for two cancer types.

Exploring the cancer risk perception and interest in genetic services among Indigenous people in Queensland, Australia

Objective: The purpose of this study is to explore the levels of interest among Indigenous people with cancer in identifying cancer risk in their family and seeking genetic counselling/testing.

Lessons learned from a pilot study of an Indigenous patient navigator intervention in Queensland, Australia

Indigenous patient navigator (IPN) programmes show promise in addressing barriers to cancer care and facilitation of patient self-efficacy. The purpose of this paper is to describe and reflect upon the experience of training an IPN and implementation of the intervention in the Australian context with Indigenous cancer patients. Randomised clinical trial might provide the best available evaluation measure of an intervention but caution should be taken in the implementation process. Socio-cultural aspects and training can affect the conduct of this type of intervention. We report here five issues needing consideration prior to implementing such intervention. Specifically: (1) recognition of the collective bonds within Indigenous community and understanding by IPN of the degree of personal assistance perceived as not intrusive by the patient; (2) conduct ongoing evaluation of the different role of an IPN involved in this intervention care provider vs. researcher. (3) meaningful engagement develops from a trusting/collaborative relationship between research team and study site staff which may not occur in the study time frame; (4) existing skills as well as training provided may not translate in the IPN understanding and aligning with the study objectives/research values; (5) recruitment of participants requires innovative and highly flexible strategies to be successful.

Physical functioning and psychological morbidity among regional and rural cancer survivors: A report from a regional cancer centre

OBJECTIVE To identify factors associated with psychosocial, physical and practical difficulties of daily living and distress among cancer survivors from a regional area in Australia. DESIGN Cross-sectional study. SETTING Riverina region of southern New South Wales. PARTICIPANTS The sample included 134 patients who completed treatment for breast, colorectal, lung or cancer at the Riverina Cancer Care Centre. MAIN OUTCOME MEASURES Distress was assessed by the Distress Thermometer. Psychosocial, physical and practical difficulties of daily living were assessed by the Patient-Reported Outcomes Measurement Information System questionnaires. RESULTS A high proportion of cancer survivors had abnormal scores for physical function, sleep disturbance, satisfaction with role, fatigue and pain interference, with many also displaying abnormal scores for anxiety, depression and distress. Survivors living in rural areas and those who had undergone surgery had higher odds of having abnormal scores for sleep disturbance than their counterparts. Living without a partner increased the odds of anxiety and depression. Having advanced disease increased the odds of anxiety and pain. Colorectal cancer and higher education were associated with depression. CONCLUSION Monitoring for abnormal physical and psychosocial issues after cancer treatment is essential to maintain or improve psychosocial well-being during survivorship. When developing survivorship care plans for patients residing in regional centres, health professionals should consider availability of high-quality and accessible support services in regional areas of Australia.

Identification of Australian Aboriginal and Torres Strait Islander Cancer Patients in the Primary Health Care Setting

Background Aboriginal and Torres Strait Islander Australians have poorer cancer outcomes and experience 30% higher mortality rates compared to non-Indigenous Australians. Primary health care (PHC) services are increasingly being recognized as pivotal in improving Indigenous cancer patient outcomes. It is currently unknown whether patient information systems and practices in PHC settings accurately record Indigenous and cancer status. Being able to identify Indigenous cancer patients accessing services in PHC settings is the first step in improving outcomes. Methods Aboriginal Medical Centres, mainstream (non-Indigenous specific), and government-operated centers in Queensland were contacted and data were collected by telephone during the period from 2014 to 2016. Participants were asked to (i) identify the number of patients diagnosed with cancer attending the service in the previous year; (ii) identify the Indigenous status of these patients and if this information was available; and (iii) advise how this information was obtained. Results Ten primary health care centers (PHCCs) across Queensland participated in this study. Four centers were located in regional areas, three in remote areas and three in major cities. All participating centers reported ability to identify Indigenous cancer patients attending their service and utilizing electronic Patient Care Information Systems (PCIS) to manage their records; however, not all centers were able to identify Indigenous cancer patients in this way. Indigenous cancer patients were identified by PHCCs using PCIS (n = 8), searching paper records (n = 1), and combination of PCIS and staff recall (n = 1). Six different types of PCIS were being utilized by participating centers. There was no standardized way to identify Indigenous cancer patients across centers. Health service information systems, search functions and capacities of systems, and staff skill in extracting data using PCIS varied between centers. Conclusion It is crucial to be able to easily identify Indigenous cancer patients accessing health services in the PHC setting to monitor progress, improve and evaluate care, and ultimately improve Indigenous cancer outcomes. It is also important for PHC staff to receive adequate training and support to utilize PCISs efficiently and effectively.