ABSTRACT
BACKGROUND: Delays to breast cancer treatment can lead to more aggressive and extensive treatments, increased expenses, increased psychological distress, and poorer survival. We explored the individual and area level factors associated with the interval between diagnosis and first treatment in a population-based cohort in Queensland, Australia. METHODS: Data from 3216 Queensland women aged 20 to 79, diagnosed with invasive breast cancer (ICD-O-3 C50) between March 2010 and June 2013 were analysed. Diagnostic dates were sourced from the Queensland Cancer Registry and treatment dates were collected via self-report. Diagnostics-treatment intervals were modelled using flexible parametric survival methods. RESULTS: The median interval between breast cancer diagnosis and first treatment was 15 days, with an interquartile range of 9-26 days. Longer diagnostic-treatment intervals were associated with a lack of private health coverage, lower pre-diagnostic income, first treatments other than breast conserving surgery, and residence outside a major city. The model explained a modest 13.7% of the variance in the diagnostic-treatment interval [Formula: see text]. Sauerbrei's D was 0.82, demonstrating low to moderate discrimination performance. CONCLUSION: Whilst this study identified several individual- and area-level factors associated with the time between breast cancer diagnosis and first treatment, much of the variation remained unexplained. Increased socioeconomic disadvantage appears to predict longer diagnostic-treatment intervals. Though some of the differences are small, many of the same factors have also been linked to screening and diagnostic delay. Given the potential for accumulation of delay at multiple stages along the diagnostic and treatment pathway, identifying and applying effective strategies address barriers to timely health care faced by socioeconomically disadvantaged women remains a priority.
Subject(s)
Breast Neoplasms , Female , Humans , Queensland/epidemiology , Breast Neoplasms/diagnosis , Breast Neoplasms/epidemiology , Breast Neoplasms/therapy , Delayed Diagnosis , Socioeconomic Factors , AustraliaABSTRACT
OBJECTIVE: To undertake an economic evaluation of a telehealth psychological support intervention for patients with primary brain tumor (PBT). METHODS: A within-trial cost-utility analysis over 6 months was performed comparing a tailored telehealth-psychological support intervention with standard care (SC) in a randomized control trial. Data were sourced from the Telehealth Making Sense of Brain Tumor (Tele-MAST) trial survey data, project records, and administrative healthcare claims. Quality-adjusted life years (QALYs) were calculated based on the EuroQol-5D-5L. Non-parametric bootstrapping with 2000 iterations was used to determine sampling uncertainty. Multiple imputation was used for handling missing data. RESULTS: The Tele-MAST trial included 82 participants and was conducted in Queensland, Australia during 2018-2021. When all healthcare claims were included, the incremental cost savings from Tele-MAST were -AU$4,327 (95% CI: -$8637, -$18) while incremental QALY gains were small at 0.03 (95% CI: -0.02, 0.08). The likelihood of Tele-MAST being cost-effective versus SC was 87% at a willingness-to-pay threshold of AU$50,000 per QALY gain. When psychological-related healthcare costs were included only, the incremental cost per QALY gain was AU$10,685 (95% CI: dominant, $24,566) and net monetary benefits were AU$534 (95% CI: $466, $602) with a 65% likelihood of the intervention being cost-effective. CONCLUSIONS: Based on this small randomized controlled trial, the Tele-MAST intervention is a cost-effective intervention for improving the quality of life of people with PBT in Australia. Patients receiving the intervention incurred significantly lower overall healthcare costs than patients in SC. There was no significant difference in costs incurred for psychological health services.
Subject(s)
Brain Neoplasms , Telemedicine , Humans , Cost-Benefit Analysis , Quality of Life , Health Care Costs , Brain Neoplasms/therapy , Quality-Adjusted Life YearsABSTRACT
OBJECTIVE: Quality survivorship information is an essential component of cancer care. However, survivors often report not receiving this information and healthcare professionals report limited practical guidance on how to effectively deliver survivorship information. Therefore, this study used realist review methods to identify mechanisms reported within the published literature for communicating survivorship information and to understand the contextual factors that make these mechanisms effective. METHODS: Full-text papers published in CINAHL, PubMed, Web of Science, Scopus, Cochrane Library, and Academic Search Ultimate were included. Studies included in this review were conducted in Australia between January 2006 and December 2023, and reported on how information regarding survivorship care was communicated to adult cancer survivors living in the community. This review utilized realist methodologies: text extracts were converted to if-then statements used to generate context-mechanism-outcome theories. RESULTS: Fifty-one studies were included and six theories for mechanisms that underpin the effective delivery of survivorship information were formed. These include: (1) tailoring information based on the survivors' background, (2) enhancing communication among providers, (3) employing dedicated survivorship staff, (4) providing survivorship training, (5) reducing the burden on survivors to navigate their care, and (6) using multiple modalities to provide information. CONCLUSIONS: Findings can inform practical guidance for how survivorship care information is best delivered in practice. Clinicians can apply this guidance to improve their individual interactions with cancer survivors, as can policymakers to develop healthcare systems and procedures that support effective communication of cancer survivorship information.
Subject(s)
Cancer Survivors , Survivorship , Humans , Australia , Cancer Survivors/psychology , Neoplasms/therapy , Neoplasms/psychology , Communication , Delivery of Health CareABSTRACT
BACKGROUND: An international expert panel recently recommended 15 'non-stage prognostic indicators' (NSPIs) across eight childhood cancers, classified as essential or additional, for collection in population-based cancer registries. We aimed to describe the incidence distribution and survival of each of these NSPIs. PROCEDURES: Cases were extracted from the Australian Childhood Cancer Registry. The study cohort (n = 4187) comprised all children aged under 15 years diagnosed with an eligible cancer between 2010 and 2018, with follow-up until 31 December 2020. NSPI data were collected directly from each patient's medical records. Differences in 5-year relative survival were assessed using multivariable flexible parametric models, adjusted for sex and age group at diagnosis. RESULTS: The availability of data varied, exceeding 85% for all essential NSPIs apart from histologic subtype for Wilms tumours (69%) and lineage for acute lymphoblastic leukaemia (78%). Information on additional NSPIs tended to be recorded less often, particularly cytogenetic subtype for non-alveolar rhabdomyosarcoma (28%) and astrocytoma (4%). Eight NSPIs exhibited a significant difference in survival, with the largest disparity occurring among children with astrocytoma according to tumour grade (5-year relative survival of 18% for grade IV disease compared with 99% for grade I disease; p < .001). CONCLUSIONS: Our findings demonstrate that most of the recommended NSPIs can be retrieved from medical records in Australia in recent years, allowing the capability of assessing survival within patient subgroups of clinical interest. Reporting of NSPI data has the capability to inform local and global understanding of population-level disparities in childhood cancer survival.
Subject(s)
Astrocytoma , Kidney Neoplasms , Neoplasms , Child , Humans , Infant , Neoplasms/epidemiology , Neoplasms/therapy , Incidence , Prognosis , Australia/epidemiology , RegistriesABSTRACT
Rare cancers collectively account for around a quarter of cancer diagnoses and deaths. However, epidemiological studies are sparse. We describe spatial and geographical patterns in incidence and survival of rare cancers across Australia using a population-based cancer registry cohort of rare cancer cases diagnosed among Australians aged at least 15 years, 2007 to 2016. Rare cancers were defined using site- and histology-based categories from the European RARECARE study, as individual cancer types having crude annual incidence rates of less than 6/100 000. Incidence and survival patterns were modelled with generalised linear and Bayesian spatial Leroux models. Spatial heterogeneity was tested using the maximised excess events test. Rare cancers (n = 268 070) collectively comprised 22% of all invasive cancer diagnoses and accounted for 27% of all cancer-related deaths in Australia, 2007 to 2016 with an overall 5-year relative survival of around 53%. Males and those living in more remote or more disadvantaged areas had higher incidence but lower survival. There was substantial evidence for spatial variation in both incidence and survival for rare cancers between small geographical areas across Australia, with similar patterns so that those areas with higher incidence tended to have lower survival. Rare cancers are a substantial health burden in Australia. Our study has highlighted the need to better understand the higher burden of these cancers in rural and disadvantaged regions where the logistical challenges in their diagnosis, treatment and support are magnified.
Subject(s)
Neoplasms , Male , Humans , Incidence , Australia/epidemiology , Bayes Theorem , GeographyABSTRACT
OBJECTIVE: To conduct a systematic literature review to critically assess the met and unmet post-treatment information needs of cancer survivors living in rural communities in Australia, to inform the improvement of survivors' transition from treatment in major cities to community care. METHODS: Cumulative index of nursing and allied health literature, PubMed, Web of Science, Scopus, Cochrane CENTRAL and Academic Search Ultimate databases and websites of 118 cancer organisations were searched for relevant Australian studies published since 2006. Key search terms included 'rural', 'remote', 'regional', 'cancer', 'survivor*', 'living with', and 'post-treatment'. Data reflecting study source, aims, methodology, and reported information needs were extracted and summarised. Study quality was assessed using Joanna Briggs Institute tools. RESULTS: Fifty-two articles met eligibility criteria. Only six of these specified a primary aim of understanding information needs for rural cancer survivors. Information on prognosis and recovery; managing treatment side effects; healthy lifestyle choices; referrals to support services, and face-to-face and written delivery of information at multiple time points were reported as needed and often lacking for rural cancer survivors. CONCLUSIONS: Co-ordinated, multi-step provision of information to support health and recovery after cancer treatment and beyond is likely to be particularly important for rural cancer survivors given their broad range of needs and reduced access to health care services. Findings provide useful recommendations to facilitate patients' transition home to rural communities after cancer treatment in major cities, however, an increased understanding of the information needs of rural survivors is required to inform the development of guidelines that can be used in clinical practice.
Subject(s)
Cancer Survivors , Neoplasms , Humans , Rural Population , Australia , Neoplasms/therapyABSTRACT
OBJECTIVE: This pragmatic randomized control trial aimed to evaluate clinical efficacy of the Making Sense of Brain Tumour program delivered via videoconferencing (Tele-MAST) for improving mental health and quality of life (QoL) relative to standard care in individuals with primary brain tumor (PBT). METHOD: Adults with PBT experiencing at least mild distress (Distress Thermometer ≥4) and caregivers were randomly allocated to the 10-session Tele-MAST program or standard care. Mental health and QoL were assessed pre-intervention, post-intervention (primary endpoint), and 6-weeks and 6-months follow-up. The primary outcome was clinician-rated depressive symptoms on the Montgomery-Asberg Depression Rating Scale. RESULTS: 82 participants with PBT (34% benign, 20% lower-grade glioma, 46% high-grade glioma) and 36 caregivers were recruited (2018-2021). Controlling for baseline functioning, Tele-MAST participants with PBT had lower depressive symptoms at post-intervention (95% CI: 10.2-14.6, vs. 15.2-19.6, p = 0.002) and 6-weeks post-intervention (95% CI: 11.5-15.8 vs. 15.6-19.9, p = 0.010) than standard care, and were almost 4 times more likely to experience clinically reduced depression (OR, 3.89; 95% CI: 1.5-9.9). Tele-MAST participants with PBT also reported significantly better global QoL, emotional QoL and lower anxiety at post-intervention and 6-weeks post-intervention than standard care. There were no significant intervention effects for caregivers. At 6-months follow-up participants with PBT who received Tele-MAST reported significantly better mental health and QoL relative to pre-intervention. CONCLUSIONS: Tele-MAST was found to be more effective for reducing depressive symptoms at post-intervention than standard care for people with PBT but not caregivers. Tailored and extended psychological support may be beneficial for people with PBT.
Subject(s)
Brain Neoplasms , Glioma , Telemedicine , Adult , Humans , Quality of Life , Brain Neoplasms/therapy , Caregivers/psychology , Depression/therapyABSTRACT
Estimates of childhood cancer survival are usually reported at 5 years after diagnosis only. Using cases prevalent between 2014 and 2018 from the population-based Australian Childhood Cancer Registry, we used the period method to calculate relative survival up to 20 years post diagnosis by cancer type. Twenty-year relative survival for all childhood cancers combined (n = 14,353) was 83.8% (95% confidence interval [CI] = 82.6%-85.0%). Survival decreased only slightly after 10 years for most childhood cancers, except for some types of brain and liver tumours. These contemporary estimates of long-term survival provide valuable information to assist childhood cancer patients and their families in planning for the future.
Subject(s)
Neoplasms , Child , Humans , Infant , Neoplasms/pathology , Registries , Australia/epidemiology , Survival AnalysisABSTRACT
Survivors of childhood cancer have an increased risk of long-term health issues arising mostly from the side effects of treatment. Using population-based data from the Australian Childhood Cancer Registry (ACCR) for children aged 0-14 at diagnosis between 1983 and 2018, there were a total of 17,468 prevalent cases of childhood cancer survivors on 31 December 2018. We also found an 80% increase in the number of 5-year prevalent cases, from 1979 in 1988 to 3566 in 2018. Both short- and long-term prevalence estimates are important for monitoring childhood cancer survivorship and planning for the specific needs of this expanding cohort.
Subject(s)
Cancer Survivors , Neoplasms , Humans , Child , Neoplasms/therapy , Australia/epidemiology , Prevalence , SurvivorsABSTRACT
BACKGROUND: Large improvements in childhood cancer survival have been reported over recent decades. Data from cancer registries have the advantage of providing a 'whole of population' approach to gauge the success of cancer control efforts. OBJECTIVES: The aim of this study was to investigate recent survival estimates for children diagnosed with cancer Australia and to examine the extent of changes in survival over the last 35 years. For the first time, we also estimated the number of deaths among Australian children that were potentially avoided due to improvements in survival. METHODS: A retrospective, population-based cohort study design was used. Case information was extracted from the Australian Childhood Cancer Registry for 1983-2016, with follow-up to 31 December 2017. Eligible children were aged 0-14 with a basis of diagnosis other than autopsy or death certificate only. Five-year relative survival was calculated using the semi-complete cohort method for three diagnosis periods (1983-1994, 1995-2006 and 2007-2016), and changes in survival over time were assessed via flexible parametric models. Avoided deaths within 5 years for those diagnosed between 1995 and 2016 were estimated under the assumption that survival rates remained the same as for 1983-1994. RESULTS: Overall 5-year survival within the study cohort (n = 20,871) increased from 72.8% between 1983 and1994 to 86.1% between 2007 and 2016, equating to an adjusted excess mortality hazard ratio of 1.82 (95% confidence interval 1.67, 1.97). Most cancers showed improvements in survival; other gliomas, hepatoblastoma and osteosarcoma were exceptions. Among children diagnosed between 1995 and 2016, 38.7% of expected deaths within 5 years of diagnosis (n = 1537 of 3970) were avoided due to temporal improvements in survival. CONCLUSIONS: Survival for childhood cancer has continued to improve over recent years, thanks mainly to ongoing progress in treatment development combined with improved supportive care. Providing innovative measures of survival, such as avoided deaths, may assist with understanding outcome data produced by cancer registries.
Subject(s)
Liver Neoplasms , Neoplasms , Child , Humans , Cohort Studies , Retrospective Studies , Australia/epidemiology , Survival Rate , RegistriesABSTRACT
BACKGROUND: The Toronto Paediatric Cancer Stage Guidelines are a compendium of staging systems developed to facilitate collection of consistent and comparable data on stage at diagnosis for childhood cancers by cancer registries. MATERIAL AND METHODS: This retrospective, observational cohort study investigated changes in stage-specific incidence and survival for children diagnosed between 2000-2008 compared to 2009-2017 using the population-based Australian Childhood Cancer Registry. Information on mortality for each patient was available to 31st December 2020. Shifts in incidence by stage were evaluated using chi-square tests, and differences in stage-specific five-year observed survival for all causes of death over time were assessed using flexible parametric models. RESULTS: Stage was assigned according to the Toronto Guidelines for 96% (n = 7944) of the total study cohort (n = 8292). Changes in the distribution of incidence by stage between the two diagnosis periods were observed for retinoblastoma, with stage 0 increasing from 26% to 37% of cases (p = 0.02), and hepatoblastoma, with metastatic disease increasing from 22% to 39% of cases (p = 0.04). There were large gains in stage-specific survival over time for stage IV rhabdomyosarcoma (five-year adjusted mortality hazard ratio for 2009-2017 compared to 2000-2008 of 0.38, 95% CI 0.19-0.77; p = 0.01), stage M3 for medulloblastoma (HR = 0.41, 95% CI 0.21-0.79; p = 0.01) and metastatic neuroblastoma excluding stage MS (HR = 0.61, 95% CI 0.44-0.84; p < 0.01). CONCLUSION: These results indicate that improvements in childhood cancer survival in Australia are most likely due to refined management rather than changes in stage at diagnosis, particularly for metastatic solid tumours. Wide international uptake of the Toronto Guidelines will allow comprehensive evaluation of differences in survival between countries.
Subject(s)
Neoplasms, Second Primary , Neoplasms , Neuroblastoma , Child , Humans , Neoplasms/epidemiology , Incidence , Retrospective Studies , Australia/epidemiology , Neoplasm Staging , Registries , Neoplasms, Second Primary/pathologyABSTRACT
OBJECTIVES: To assess associations between breast cancer-specific survival and timeliness of treatment, based on 2020 Australian guidelines for the treatment of early breast cancer. DESIGN: Population-based cohort study; analysis of linked Queensland Cancer Register, patient medical record, and National Death Index data, supplemented by telephone interviews. SETTING, PARTICIPANTS: Women aged 20-79 years diagnosed with invasive breast cancer during 1 March 2010 - 30 June 2013, followed to 31 December 2020. MAIN OUTCOME MEASURES: Breast cancer-specific survival for women who received or did not receive treatment within the recommended timeframe, overall and for six treatment intervals; optimal cut-points for each treatment interval; characteristics of women for whom treatment was not provided within the recommended timeframe. RESULTS: Of 5426 eligible women, 4762 could be invited for interviews; complete data were available for 3044 women (56% of eligible women, 65% of invited women). Incomplete compliance with guideline interval recommendations was identified for 1375 women (45%); their risk of death from breast cancer during the follow-up period was greater than for those for whom guideline compliance was complete (adjusted hazard ratio [aHR], 1.43; 95% confidence interval [CI], 1.04-1.96). Risk of death was greater for women for whom the diagnosis to surgery interval exceeded 29 days (aHR, 1.76; 95% CI, 1.19-2.59), the surgery to chemotherapy interval exceeded 36 days (aHR, 1.63; 95% CI, 1.13-2.36), or the chemotherapy to radiotherapy interval exceeded 31 days (aHR, 1.83; 95% CI, 1.19-2.80). Treatment intervals longer than recommended were more frequent for women for whom breast cancer was detected by public facility screening (adjusted odds ratio [aOR], 1.58; 95% CI, 1.22-2.04) or by symptoms (aOR, 1.39; 95% CI, 1.09-1.79) than when cancer had been detected in private facilities, and for women without private health insurance (aOR, 1.96; 95% CI, 1.66-2.32) or living outside major cities (aOR, 1.38; 95% CI, 1.18-1.62). CONCLUSIONS: Breast cancer-specific survival was poorer for women for whom the diagnosis to surgery, surgery to chemotherapy, or chemotherapy to radiotherapy intervals exceeded guideline-recommended limits. Our findings support 2020 Australian guideline recommendations regarding timely care.
Subject(s)
Breast Neoplasms , Female , Humans , Breast Neoplasms/therapy , Breast Neoplasms/drug therapy , Cohort Studies , Queensland/epidemiology , Australia , BreastABSTRACT
The COVID-19 pandemic has caused disruptions to national health systems and impacted health outcomes worldwide. However, the extent to which surveillance systems, such as population-based cancer registration, have been affected was not reported. Here we sought to evaluate the effect of the pandemic on registry operations across different areas and development levels worldwide. We investigated the impact of COVID-19 on three main areas of cancer registry operations: staffing, financing and data collection. An online survey was administered to 750 member registries of the International Association for Cancer Registries. Among 212 responding registries from 90 countries, 65.6% reported a disruption in operations, ranging between 45% in south-eastern Asia and 87% in the Latin America and Caribbean. Active data collection was disrupted more than case notifications or hybrid methods. In countries categorized with low Human Development Index (HDI), a greater number of registries reported a negative impact (81.3%) than in very high HDI countries (57.8%). This contrast was highest in term of impact on financing: 9/16 (56%) registries in low HDI countries reported a current or an expected decline in funding, compared to 7/108 (7%) in very high HDI countries. With many cancer registries worldwide reporting disruption to their operations during the early COVID-19 pandemic, urgent actions are needed to ensure their continuity. Governmental commitment to support future registry operations as an asset to disease control, alongside a move toward electronic reporting systems will help to ensure the sustainability of cancer surveillance worldwide.
Subject(s)
COVID-19/epidemiology , Neoplasms/epidemiology , Pandemics/statistics & numerical data , Registries/statistics & numerical data , Global Health/statistics & numerical data , Humans , Surveys and QuestionnairesABSTRACT
Despite improved survival rates, cancer remains one of the most common causes of childhood death. The International Cancer Benchmarking Partnership (ICBP) showed variation in cancer survival for adults. We aimed to assess and compare trends over time in cancer mortality between children, adolescents and young adults (AYAs) and adults in the six countries involved in the ICBP: United Kingdom, Denmark, Australia, Canada, Norway and Sweden. Trends in mortality between 2001 and 2015 in the six original ICBP countries were examined. Age standardised mortality rates (ASR per million) were calculated for all cancers, leukaemia, malignant and benign central nervous system (CNS) tumours, and non-CNS solid tumours. ASRs were reported for children (age 0-14 years), AYAs aged 15 to 39 years and adults aged 40 years and above. Average annual percentage change (AAPC) in mortality rates per country were estimated using Joinpoint regression. For all cancers combined, significant temporal reductions were observed in all countries and all age groups. However, the overall AAPC was greater for children (-2.9; 95% confidence interval = -4.0 to -1.7) compared to AYAs (-1.8; -2.1 to -1.5) and adults aged >40 years (-1.5; -1.6 to -1.4). This pattern was mirrored for leukaemia, CNS tumours and non-CNS solid tumours, with the difference being most pronounced for leukaemia: AAPC for children -4.6 (-6.1 to -3.1) vs AYAs -3.2 (-4.2 to -2.1) and over 40s -1.1 (-1.3 to -0.8). AAPCs varied between countries in children for all cancers except leukaemia, and in adults over 40 for all cancers combined, but not in subgroups. Improvements in cancer mortality rates in ICBP countries have been most marked among children aged 0 to 14 in comparison to 15 to 39 and over 40 year olds. This may reflect better care, including centralised service provision, treatment protocols and higher trial recruitment rates in children compared to older patients.
Subject(s)
Benchmarking , Mortality/trends , Neoplasms/epidemiology , Neoplasms/mortality , Registries/statistics & numerical data , Adolescent , Adult , Australia/epidemiology , Canada/epidemiology , Child , Child, Preschool , Denmark/epidemiology , Female , Follow-Up Studies , Humans , Incidence , Infant , Infant, Newborn , Male , Norway/epidemiology , Prognosis , Survival Rate , Sweden/epidemiology , United Kingdom/epidemiology , Young AdultABSTRACT
PURPOSE: Prognostic models can help inform patients on the future course of their cancer and assist the decision making of clinicians and patients in respect to management and treatment of the cancer. In contrast to previous studies considering survival following treatment, this study aimed to develop a prognostic model to quantify breast cancer-specific survival at the time of diagnosis. METHODS: A large (n = 3323), population-based prospective cohort of women were diagnosed with invasive breast cancer in Queensland, Australia between 2010 and 2013, and followed up to December 2018. Data were collected through a validated semi-structured telephone interview and a self-administered questionnaire, along with data linkage to the Queensland Cancer Register and additional extraction from medical records. Flexible parametric survival models, with multiple imputation to deal with missing data, were used. RESULTS: Key factors identified as being predictive of poorer survival included more advanced stage at diagnosis, higher tumour grade, "triple negative" breast cancers, and being symptom-detected rather than screen detected. The Harrell's C-statistic for the final predictive model was 0.84 (95% CI 0.82, 0.87), while the area under the ROC curve for 5-year mortality was 0.87. The final model explained about 36% of the variation in survival, with stage at diagnosis alone explaining 26% of the variation. CONCLUSIONS: In addition to confirming the prognostic importance of stage, grade and clinical subtype, these results highlighted the independent survival benefit of breast cancers diagnosed through screening, although lead and length time bias should be considered. Understanding what additional factors contribute to the substantial unexplained variation in survival outcomes remains an important objective.
Subject(s)
Breast Neoplasms , Australia , Breast Neoplasms/diagnosis , Breast Neoplasms/epidemiology , Breast Neoplasms/therapy , Female , Humans , Prognosis , Prospective Studies , Queensland/epidemiologyABSTRACT
OBJECTIVE: To describe the actions taken by recipients of mail-out faecal occult blood test (FOBT) kits and to identify the points at which progress towards kit completion typically stops. Differences according to gender, age, and screening intention were also examined. METHODS: 1599 people completed an online survey identifying the actions they took upon receiving an FOBT kit. Latent class analysis was conducted to identify latent subgroups of participants that reported similar actions. Differences between gender, age, and intention status were assessed using non-invariance testing. RESULTS: Four latent subgroups of FOBT invitees were identified: those who complete and return their FOBT kit ('completers'); those who bring the kit into their house but go no further ('ignorers'); those who open the package and read the bowel cancer information materials but go no further ('readers'); and those who read the instructions but do not place the kit near the toilet and do not complete their FOBT kit ('leavers'). Non-completers who intended to use the kit were most likely to be in the 'leavers' class, while those who had no intention were most likely to be in the 'readers' class. CONCLUSIONS: Distinct subgroups of non-responders exist among bowel cancer screening invitees, suggesting different behaviour change interventions are needed to facilitate participation. Some invitees, especially those with high participatory intention, are likely to benefit from prompts to take the kit into the toilet, while others, with little participatory intention, often read the invitation materials presenting an opportunity to intervene with health messages.
Subject(s)
Colorectal Neoplasms , Early Detection of Cancer , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/prevention & control , Humans , Mass Screening , Occult Blood , Postal ServiceABSTRACT
OBJECTIVE: To identify whether supportive care needs vary according to remoteness and area-level socio-economic status and to identify the combinations of socio-demographic, area-level and health factors that are associated with poorer quality of life, psychological distress and severity of unmet supportive care needs. METHODS: Cross sectional data was collected from women with a breast cancer diagnosis (n = 2635) in Queensland, Australia, through a telephone survey including socio-demographic, health, psychosocial and supportive care needs measures. Hierarchical regression and cluster analyses were applied to assess the predictors of unmet need and psychosocial outcomes and to identify socio-demographic and health status profiles of women, comparing their level of unmet needs and psychosocial outcomes. RESULTS: Women living in outer regional areas reported the highest severity of unmet need in the patient care domain. Greater unmet need for health systems and information and patient care was also evident for those in moderately and most disadvantaged areas. Three clusters were identified reflecting (1) older women with poorer health and lower education (19%); (2) younger educated women with better health and private insurance (61%); and (3) physically active women with localised cancer who had completed treatment (20%). Poorer outcomes were evident in the first two of these clusters. CONCLUSIONS: This better understanding of the combinations of characteristics associated with poorer psychosocial outcomes and higher unmet need can be used to identify women with higher supportive care needs early and to target interventions.
Subject(s)
Breast Neoplasms , Female , Humans , Aged , Breast Neoplasms/psychology , Quality of Life/psychology , Social Support , Cross-Sectional Studies , Surveys and Questionnaires , Health Services Needs and DemandABSTRACT
BACKGROUND: This study reports cancer incidence and survival among Aboriginal and Torres Strait Islander children and other Australian children, and assesses changes over time. PROCEDURE: Data were from the population-based Australian Childhood Cancer Registry. The study comprised children aged under 15 diagnosed between 1997 and 2016 and with mortality follow-up until 31 December 2017. Incidence trends were analysed using JoinPoint regression. Five-year cancer-specific survival was calculated using the semi-complete approach with survival comparisons made using multivariable flexible parametric models. RESULTS: Aboriginal and Torres Strait Islander children accounted for 506 of 13,299 eligible cases (3.8%). Incidence rates for Aboriginal and Torres Strait Islander children across the study period increased by 2.3% annually (95% confidence interval [CI]: +0.6% to +4.0%) and for other Australian children increased by 0.6% annually (95% CI: +0.3% to +0.9%; p = .05). Nonetheless, cancer incidence was consistently lower for Aboriginal and Torres Strait Islander children, with an incidence rate ratio of 0.73 (95% CI: 0.62-0.85; p < .01) between 2012 and 2016. Survival for Aboriginal and Torres Strait Islander children with solid tumours was 70.6% (95% CI: 62.5%-77.3%) and for other Australian children was 83.5% (95% CI: 82.3%-84.7%; p < .01), with indications of this difference diminishing in recent years. CONCLUSIONS: Improvements in identification, particularly in urban areas, most likely accounts for the greater increase in cancer incidence rates among Aboriginal and Torres Strait Islander children. Examination of data on stage at diagnosis and treatment may provide important insights into survival for children with solid tumours.
Subject(s)
Native Hawaiian or Other Pacific Islander , Neoplasms , Australia/epidemiology , Child , Humans , Incidence , Neoplasms/epidemiology , Racial GroupsABSTRACT
OBJECTIVE: This study compares the well-being of rural caregivers with that of the general population and explores the potential drivers of poorer outcomes. METHOD: Patient-caregiver dyads (n = 241) residing in regional or remote Queensland, Australia, reported on QoL, chronic illness, caregiver burden, depression, anxiety and stress. Caregiver outcomes were compared with population norms and patient outcomes. Multiple regressions were conducted to identify factors associated with poorer caregiver outcomes. RESULTS: Caregivers reported lower mental health-related QoL (M = 0.436, 95% CI = 0.410-0.462) in comparison with age-matched population norms (M = 0.556, 95% CI = 0.532-0.580). No differences existed between caregiver and population norms for anxiety, stress and depression. Caregiver chronic illness and higher burden were associated with poorer mental and physical QoL, depression, anxiety and stress (η2 s ranging from 0.03 to 0.30). These associations were slightly stronger for male caregivers when compared with female caregivers (η2 s ranging from 0.03 to 0.08). CONCLUSION: It is vital that efforts are made to improve rural caregivers' mental and emotional well-being. Interventions that support caregivers with chronic conditions reduce caregiver burden and take into consideration the unique experience of male caregivers will go some way to addressing this. Future research is needed to identify other drivers of health outcomes in this group.
Subject(s)
Caregivers , Neoplasms , Anxiety/psychology , Caregivers/psychology , Chronic Disease , Cross-Sectional Studies , Depression/psychology , Female , Humans , Male , Neoplasms/therapy , Quality of Life/psychologyABSTRACT
The lack of accurate population-based information on childhood cancer stage and survival in low-income countries is a barrier to improving childhood cancer outcomes. In our study, data from three population-based registries in sub-Saharan Africa (Abidjan, Harare and Kampala) were examined for children aged under 15. We assessed the feasibility of assigning stage at diagnosis according to Tier 1 of the Toronto Childhood Cancer Stage Guidelines for patients with non-Hodgkin lymphoma [including Burkitt lymphoma (BL)], retinoblastoma and Wilms' tumour. Patients were actively followed-up, allowing calculation of 3-year relative survival by cancer type and registry. Stage-specific observed survival was estimated. The cohort comprised 381 children, of whom half (n = 192, 50%) died from any cause within 3 years of diagnosis. Three-year relative survival varied by malignancy and location and ranged from 17% [95% confidence interval (CI) = 6%-33%] for BL in Harare to 57% (95% CI = 31%-76%) for retinoblastoma in Kampala. Stage was assigned for 83% of patients (n = 317 of 381), with over half having metastatic or advanced disease at diagnosis (n = 166, 52%). Stage was a strong predictor of survival for each malignancy; for example, 3-year observed survival was 88% (95% CI = 68%-96%) and 13% (4%-29%) for localised and advanced BL, respectively (P < .001). These are the first data on stage distribution and stage-specific survival for childhood cancers in Africa. They demonstrate the feasibility of the Toronto Stage Guidelines in a low-resource setting and highlight the value of population-based cancer registries in aiding our understanding of the poor outcomes experienced by this population.