Supportive care needs among Indigenous cancer patients in Queensland, Australia: less comorbidity is associated with greater practical and cultural unmet need (original) (raw)
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European Journal of Cancer Care, 2019
Objectives: This study describes and compares the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer. Methods: Data from two cross-sectional supportive care needs studies were matched in a 1:1 ratio for Indigenous (n = 125) and Non-Indigenous (n = 125) Australian adults diagnosed with cancer. Descriptive statistics were used to compare type and prevalence of 24 need items measured by the SCNS-SF34 and SCNAT-IP. Results: A higher proportion of Non-Indigenous participants compared to Indigenous participants reported having any moderate-to-high level of unmet needs (70% vs. 54%, p = 0.013) and the difference was consistently observed across non-matched characteristics. While concerns for caregivers, fear of recurrence and pain were central needs for both Indigenous participants and Non-Indigenous participants, there were some key differences in the specific unmet needs between groups. Physical issues including doing usual daily activities and dealing with fatigue were the top priorities for Non-Indigenous people, while money worries, dealing with psychological issues such as how to keep their spirit strong or hope about their future appeared to be priorities for Indigenous people. Conclusions: Variations in the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer may guide health professionals to target specific needs when preparing care plans.
Unmet supportive care needs among Indigenous cancer patients across Australia
Rural and Remote Health
Introduction: Indigenous Australians with cancer tend to be diagnosed with more aggressive and advanced-stage disease, receive less treatment, have poorer survival and lower quality of life than other Australians. Reducing these inequalities requires an understanding of the supportive care needs of this cancer group. This study aims to describe the type and extent of unmet supportive care needs of Indigenous Australian cancer patients. Method: A multicentre, cross-sectional study recruited 145 Indigenous adults diagnosed with cancer in the previous 5 years in four Australian states and territories. Using a culturally specific tool, unmet needs were assessed in four domains: 'physical and psychological', 'hospital care', 'information and communication' and 'practical and cultural'. Moderate to high unmet need is that which requires some or a lot more help to be addressed. Results: Two-thirds (65%) of patients reported at least one moderate to high unmet need and 20% of patients had moderate to high unmet needs with five or more items. Overall, patients most commonly reported moderate to high unmet needs in the physical/psychological (46%) and practical/cultural domains (34%), than the information/communication (23%) and hospital care domains (16%). More specifically, 'money worries' was the most frequently reported moderate to high unmet need (20%). Conclusion: Most Indigenous Australians living with cancer experience unmet supportive care needs. Physical/psychological and practical/cultural concerns were identified as priority areas for Indigenous cancer patients. These findings may inform priority areas for intervention towards optimal care pathways for Indigenous Australians diagnosed and living with cancer.
The development of a supportive care needs assessment tool for Indigenous people with cancer
BMC Cancer
Little is known about the supportive care needs of Indigenous people with cancer and to date, existing needs assessment tools have not considered cultural issues for this population. We aimed to adapt an existing supportive care needs assessment tool for use with Indigenous Australians with cancer. Face-to-face interviews with Indigenous cancer patients (n = 29) and five focus groups with Indigenous key-informants (n = 23) were conducted to assess the face and content validity, cultural acceptability, utility and relevance of the Supportive Care Needs Survey - Short Form 34 (SCNS-SF34) for use with Indigenous patients with cancer. All items from the SCNS-SF34 were shortened and changed to use more appropriate language (e.g. the word 'anxiety' was substituted with 'worry'). Seven questions were omitted (e.g. items on death and future considerations) as they were deemed culturally inappropriate or irrelevant and 12 items were added (e.g. accessible transport). Optional...
Cancer, 2015
There are significant disparities in cancer outcomes between Indigenous and non-Indigenous Australians. Identifying the unmet supportive care needs of Indigenous Australians with cancer is imperative to improve their cancer care. The purpose of the current study was to test the psychometric properties of a supportive cancer care needs assessment tool for Indigenous people (SCNAT-IP) with cancer. The SCNAT-IP was administered to 248 Indigenous Australians diagnosed with a range of cancer types and stages, and who received treatment in 1 of 4 Queensland hospitals. All 39 items were assessed for ceiling and floor effects and were analyzed using exploratory factor analysis to determine construct validity. Identified factors were assessed for internal consistency and convergent validity to validated psychosocial tools. Exploratory factor analysis revealed a 4-factor structure (physical and psychological, hospital care, information and communication, and practical and cultural needs) expl...
Supportive Care in Cancer, 2016
Purpose The purposes of the present study are to describe changes over time in the prevalence of unmet supportive care needs of Indigenous Australians newly diagnosed with cancer and to identify factors associated with greater needs at diagnosis. Methods Unmet needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) within 3 months and at 6 months post-diagnosis. Overall needs and specific need domains were modelled using generalized estimating equations. Associations between risk factors and moderate-high unmet needs at diagnosis were assessed using multivariable logistic regression analyses. Results Over half (54%) of the participants (n = 82) experienced at least one moderate-high unmet need at diagnosis which reduced to 34% at 6 months post-diagnosis. This improvement mainly reflected the decrease in needs from the physical/psychological domain (p = 0.042). The median overall unmet need score and most domain scores were significantly lower at 6 months. Eighteen percent experienced multiple (5+) moderate-high unmet needs at diagnosis (60% continued to report needs at 6 months). The top unmet needs at diagnosis were money worries (27%), concerns about the worries of those close to you (16%) and worry about your illness spreading/getting worse (15%). Having a higher education and having received cancer treatment in the last 30 days were significantly associated with greater needs at diagnosis. Conclusions While unmet needs decreased over time, some patients continued to experience moderate-high unmet needs. This study indicates that needs should be monitored throughout the patient's journey. Coordination of support, particularly for those with multiple needs, may be important for this group.
International journal for equity in health, 2016
Indigenous Australians have poorer cancer outcomes in terms of incidence mortality and survival compared with non-Indigenous Australians. The factors contributing to this disparity are complex. Identifying and addressing the psychosocial factors and support needs of Indigenous cancer patients may help reduce this disparity. The Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) is a validated 26-item questionnaire developed to assess their unmet supportive care needs. This qualitative study reports on patient and clinician attitudes towards feasibility and acceptability of SCNAT-IP in routine care. Forty-four in-depth semi-structured interviews were conducted with 10 clinical staff and 34 Indigenous cancer patients with heterogeneous tumours. Participants were recruited from four geographically diverse Australian cancer clinics. Transcripts were imported into qualitative analysis software (NVivo 10 Software), coded and thematic analysis performed. Indigenous pati...
Health service utilization by indigenous cancer patients in Queensland: a descriptive study
International Journal for Equity in Health, 2012
Introduction: Indigenous 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. Methods: Indigenous 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.
International Journal of Environmental Research and Public Health, 2021
Little is known of the quality of life (QoL) of cancer patients in the Northern Territory (NT) of Australia, where healthcare delivery is geographically challenged. This exploratory study describes QoL among Aboriginal and non-Aboriginal cancer patients in the NT, in the first year of diagnosis. Participants were recruited from the only cancer care centre in the NT and completed the Assessment of Quality-of-Life questionnaire (AQoL-4D). The results were descriptively analysed. The participants’ (n = 63; mean age 58.8 years) mean AQoL utility score was 0.72 (SD 0.26); patients scored lowest in the relationships and mental health dimensions of the questionnaire (mean 0.89, SD 0.19, and 0.89, SD 0.17, respectively). Participants living in remote and very remote areas (46%) reported higher QoL scores, compared with participants in the outer regional capital city of the NT in the overall (mean 0.76, SD 0.22 and 0.78, SD 0.20 vs. 0.67, SD 0.29, respectively), and mental health dimensions ...
BMC cancer, 2014
Indigenous Australians have lower overall cancer survival which has not yet been fully explained. To address this knowledge deficit, we investigated the associations between comorbidities, cancer treatment and survival in Indigenous and non-Indigenous people in Queensland, Australia. A cohort study of 956 Indigenous and 869 non-Indigenous patients diagnosed with cancer during 1998-2004, frequency-matched on age, sex, remoteness of residence and cancer type, and treated in Queensland public hospitals. Survival after cancer diagnosis, and effect of stage, treatment, and comorbidities on survival were examined using Cox proportional hazard models. Overall Indigenous people had more advanced cancer stage (p = 0.03), more comorbidities (p < 0.001), and received less cancer treatment (77% vs. 86%, p = 0.001). Among patients without comorbidities and social disadvantage, there was a lower uptake of treatment among Indigenous patients compared to non-Indigenous patients. For those who re...
Patterns of primary health care service use of Indigenous Australians diagnosed with cancer
Supportive Care in Cancer, 2019
Purpose The role of general practitioners in cancer care has expanded in recent years. However, little is known about utilization of primary health care (PHC) services by patients with cancer, particularly among socioeconomically disadvantaged groups. We describe utilization of PHC services by patients with cancer, and the nature of the care provided. The study focuses on a disadvantaged group in Australia, namely Indigenous Australians. Methods A retrospective audit of clinical records in ten PHC services in Queensland, Australia. Demographic and clinical data of Indigenous Australians diagnosed with cancer during 2010-2016 were abstracted from patient's medical records at the PHC services. The rates of cancer-related visits were calculated using person years at risk as a denominator. Results A total of 138 patients' records were audited. During 12 months following the cancer diagnosis, patients visited the PHC service on average 5.95 times per year. Frequency of visits were relatively high in remote areas and among socioeconomic disadvantaged patients (IRR = 1.87, 95%CI 1.61-2.17; IRR = 1.79, 95%CI 1.45-2.21, respectively). Over 80% of visits were for seeking attention for symptoms, wound care, and emotional or social support. Patients who did not undergo surgery, had greater comorbidity, received chemotherapy and/or radiotherapy, and male gender had significantly greater rate of visits than their counterparts. Conclusion The frequency of utilization of PHC services, especially by patients with comorbidities, and the range of reasons for attendance highlights the important role of PHC services in providing cancer care. The reliance on PHC services, particularly by patients in remote and disadvantaged communities, has important implications for appropriate resourcing and support for services in these locations.