Patient and carer experiences of lung cancer referral pathway in a regional health service: a qualitative study.

BACKGROUND: Lung cancer referral pathways aim to reduce delays and improve referral patterns of people with suspected lung cancer. AIM: As part of implementing a lung cancer referral pathway at a regional Australian hospital, this study aimed to explore the experiences and perceptions of people with lung cancer and their carers. METHODS: In-depth interviews were used to elicit data for thematic analysis in this cross-sectional descriptive qualitative study. Patients with newly diagnosed lung cancer and their carers at a regional academic cancer centre were invited to participate in interviews. Five interviews were conducted face-to-face, and 14 interviews were conducted by telephone (as per interviewee preference). Interviews were audiorecorded, transcribed and qualitatively analysed. Descriptive phrases were used to generate initial inductive codes and themes. RESULTS: Nineteen participants approached agreed to take part in the study. Factors that positively impacted the care experience were good communication, timeliness and patient advocacy and support. Improper communication, long waiting times for investigations and appointments, uncertainty about the process and inconsistent advice from providers negatively impacted the care experience. Participants preferred face-to-face or video-linked consultations over telephone consultations. CONCLUSIONS: Understanding the experiences of rural and regional patients and carers with the lung cancer referral pathway is important to improve quality of care. Implementing changes to the referral pathway to improve patient and carer experiences needs to be an ongoing quality improvement exercise.

Administration of immune checkpoint inhibitors at rural towns using the Teleoncology model of care-A North Queensland perspective.

OBJECTIVE: This study aimed at evaluating the safety of administering immune checkpoint inhibitors (ICIs) and monitoring for immune-related adverse events (irAEs) using the Teleoncology model of care. DESIGN: A retrospective cohort study comparing two patient groups. SETTING: The North Queensland Teleoncology Network (NQTN) operated by the Townsville (THHS) and Cairns Hospital Health Services (CHHS) with the Townsville Cancer Centre (TCC) acting as the control group setting. PARTICIPANTS: Patients who received ICI treatment via the NQTN between January 2015 and April 2019. Patients who received ICI at the TCC over the same time period were used for comparison. MAIN OUTCOME MEASURES: Rates of high-grade irAEs and irAE-related deaths. RESULTS: Fifty-two patients received a total of 822 cycles of ICIs via the Teleoncology model through NQTN. Over the same time period, 142 patients received a total of 1521 cycles at the TCC. There were no significant differences in all demographic characteristics between either group, including tumour profile and Indigenous status. There were no statistically significant differences between the rates of high-grade irAE across multiple body organ systems (p = 0.151) and rate of hospital admissions (13.5% (NQTN) vs 5.6% (TCC), p = 0.702). There were no irAE-related deaths in either group. CONCLUSIONS: The results suggest that with adequate governance and clinical resources, ICIs can be administered safely using Teleoncology models to rural and remote towns.

Psychosocial well-being and supportive care needs of cancer patients and survivors living in rural or regional areas: a systematic review from 2010 to 2021.

PURPOSE: To summarise what is currently known about the psychosocial morbidity, experiences, and needs of people with cancer and their informal caregivers, who live in rural or regional areas of developed countries. METHODS: Eligible studies dating from August 2010 until May 2021 were identified through several online databases, including MEDLINE, EMBASE, PsychINFO, and RURAL (Rural and Remote Health Database). Results were reported according to the PRISMA guidelines and the protocol was registered on PROSPERO (CRD42020171764). RESULTS: Sixty-five studies were included in this review, including 20 qualitative studies, 41 quantitative studies, and 4 mixed methods studies. Qualitative research demonstrated that many unique psychosocial needs of rural people remain unmet, particularly relating to finances, travel, and accessing care. However, most (9/19) quantitative studies that compared rural and urban groups reported no significant differences in psychosocial needs, morbidity, or quality of life (QOL). Five quantitative studies reported poorer psychosocial outcomes (social and emotional functioning) in urban cancer survivors, while three highlighted poorer outcomes (physical functioning, role functioning, and self-reported mental health outcomes) in the rural group. CONCLUSION: Recent research shows that rural people affected by cancer have unique unmet psychosocial needs relating to rurality. However, there was little evidence that rural cancer survivors report greater unmet needs than their urban counterparts. This contrasts to the findings from a 2011 systematic review that found rural survivors consistently reported worse psychosocial outcomes. More population-based research is needed to establish whether uniquely rural unmet needs are due to general or cancer-specific factors.

Exploring the psychosocial morbidity of women undergoing chemotherapy for breast cancer in a post-war setting: experiences of Northern Sri Lankan women.

PURPOSE: A breast cancer diagnosis leads to considerable internal conflict and social disruption. Coping with breast cancer may be especially challenging where psychosocial services are not integrated to cancer care. This exploratory descriptive qualitative study delves into breast cancer-associated psychosocial morbidity among women diagnosed with breast cancer at a cancer centre in post-war northern Sri Lanka. METHODS: Fifteen women with non-metastatic breast cancer and treated with curative intent, who were undergoing or had completed adjuvant chemotherapy, were included in the study. Data were gathered through semi-structured interviews and thematically analysed. RESULTS: Aside from the immediate effects of chemotherapy, participants grappled with concerns of body image, social stigma, and dependency while straddling anxieties about the fate of their families and expenses on cancer care. Demonstrating remarkable strength and resilience, however, they drew on their families and communities for support in the absence of a formal system of psychosocial care. These women's narratives shed light on certain universal aspects of the breast cancer experience as well as its specificity in a region devastated by war, where cancer care is delivered with minimal resources. CONCLUSION: The findings underscore the need to invest in integrating psychosocial services to chronic illness care in low- and middle-income settings.

Medical Oncology Care Plan: a tool for improving the provision of clinical information to patients.

Improving clinical communication between patient and clinician through the provision of written information empowers patients to make informed decisions, underpinning patient-centred care and leading to greater health outcomes. The Townsville Cancer Centre has formulated a holistic care plan template for each patient as a tool to enhance this communication. Using questionnaire-based and qualitative surveys, understanding of the patient's cancer and perspectives of clinicians were examined. The results demonstrate that patients generally have a firm knowledge base of their disease with the predominant finding being that patients wish to be more informed with written information about their diagnosis and alternatives for treatment. While initially time consuming, completion of care plans had many benefits for clinicians; they prompted them to collect holistic information, engage in discussions to capture patient goals and document details about prognosis, treatment options and management of side-effects. Medical oncology care plans provide a sustainable method to provide clinicians a practical template to gather vital information and encourage patients to participate in the decision-making process for healthcare.

"The support has been brilliant": experiences of Aboriginal and Torres Strait Islander patients attending two high performing cancer services.

BACKGROUND: Improving health outcomes for Indigenous people by providing person-centred, culturally safe care is a crucial challenge for the health sector, both in Australia and internationally. Many cancer providers and support services are committed to providing high quality care, yet struggle with providing accessible, culturally safe cancer care to Indigenous Australians. Two Australian cancer services, one urban and one regional, were identified as particularly focused on providing culturally safe cancer care for Indigenous cancer patients and their families. The article explores the experiences of Indigenous cancer patients and their families within the cancer services and ascertains how their experiences of care matches with the cancer services' strategies to improve care. METHODS: Services were identified as part of a national study designed to identify and assess innovative services for Indigenous cancer patients and their families. Case studies were conducted with a small number of identified services. In-depth interviews were conducted with Indigenous people affected by cancer and hospital staff. The interviews from two services, which stood out as particularly high performing, were analysed through the lens of the patient experience. RESULTS: Eight Indigenous people affected by cancer and 23 hospital staff (Indigenous and non-Indigenous) were interviewed. Three experiences were shared by the majority of Indigenous cancer patients and family members interviewed in this study: a positive experience while receiving treatment at the cancer service; a challenging time between receiving diagnosis and reaching the cancer centre; and the importance of family support, while acknowledging the burden on family and carers. CONCLUSIONS: This article is significant because it demonstrates that with a culturally appropriate and person-centred approach, involving patients, family members, Indigenous and non-Indigenous staff, it is possible for Indigenous people to have positive experiences of cancer care in mainstream, tertiary health services. If we are to improve health outcomes for Indigenous people it is vital more cancer services and hospitals follow the lead of these two services and make a sustained and ongoing commitment to strengthening the cultural safety of their service.

Long-term out of pocket expenditure of people with cancer: comparing health service cost and use for indigenous and non-indigenous people with cancer in Australia.

BACKGROUND: Indigenous Australians diagnosed with cancer have poorer survival compared to non-Indigenous Australians. We aim to: 1) identify differences by Indigenous status in out-of-pocket expenditure for the first three-years post-diagnosis; 2) identify differences in the quantity and cost of healthcare services accessed; and 3) estimate the number of additional services required if access was equal between Indigenous and non-Indigenous people with cancer. METHODS: We used CancerCostMod, a model using linked administrative data. The base population was all persons diagnosed with cancer in Queensland, Australia (01JUL2011 to 30JUN2012) (n = 25,553). Each individual record was then linked to their Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Scheme (PBS) records (01JUL2011 to 30JUN2015). We then weighted the population to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians). The patient co-payment charged for each MBS service and PBS prescription was summed for each month from date of diagnosis to 36-months post-diagnosis. We then limited our model to MBS items to identify the quantity and type of healthcare services accessed during the first three-years. RESULTS: On average Indigenous people with cancer had less than half the out-of-pocket expenditure for each 12-month period (0-12 months: mean $401 Indigenous vs $1074 non-Indigenous; 13-24 months: mean $200 vs $484; and 25-36 months: mean $181 vs $441). A stepwise generalised linear model of out-of-pocket expenditure found that Indigenous status was a significant predictor of out of pocket expenditure. We found that Indigenous people with cancer on average accessed 236 services per person, however, this would increase to 309 services per person if Indigenous people had the same rate of service use as non-Indigenous people. CONCLUSIONS: Indigenous people with cancer had lower out-of-pocket expenditure, but also accessed fewer Medicare services compared to their non-Indigenous counterparts. Indigenous people with cancer were less likely to access specialist attendances, pathology tests, and diagnostic imaging through MBS, and more likely to access primary health care, such as services provided by general practitioners.

Unmet supportive care needs among people with cancer: A cross-cultural comparison between Indigenous and Non-Indigenous Australians.

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.

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.

Delays in lung cancer management pathways between rural and urban patients in North Queensland: a mixed methods study.

BACKGROUND: Despite advances in medical therapies, disparity in outcome between rural and urban patients remain in Australia and many Western countries. AIMS: To examine time delays in lung cancer referral pathways in North Queensland (NQ), Australia, and explore patients' perspective of factors causing these delays. METHODS: Prospective study of patients attending three cancer centres in Townsville, Cairns and Mackay in NQ from 2009 to 2012. Times along referral pathway were divided as follows: Onset of symptoms to treatment (T1), symptoms to general practitioner (GP) (T2), GP to specialist (T3) and Specialist to treatment (T4). Quantitative and qualitative methods were used for analysis. RESULTS: In total, 252 patients were participated. T1 was influenced by remoteness (125 days in Townsville vs 170 days for remote, P = 0.01), T2 by level of education (91 days for primary education vs 61 days for secondary vs 23 days for tertiary/Technical and Further Education (TAFE), P = 0.006), and age group (14 days for 31-50 years, 61 days for 51-70 years, 45 days for >71 years, P = 0.026), T3 by remoteness (15 days for Townville and 29.5 days for remote, P = 0.02) and T4 by stage of disease (21 days for Stage I, 11 days for Stage II, 34 days for Stage III 18 days for Stage IV, P = 0.041). Competing priorities of family and work and cost and inconvenience of travel were perceived as rural barriers. CONCLUSION: Remoteness, age and level of education were related to delays in various time lines in lung cancer referral pathways in NQ. Provision of specialist services closer to home may decrease delays by alleviating burden of cost and inconvenience of travel.

Medical emergencies in rural North Queensland: Doctors perceptions of the training needs.

OBJECTIVE: This study aimed to explore doctors' perceptions of the training needs of rural doctors in the context of managing emergencies in rural North Queensland. DESIGN: Using a qualitative approach, 20 semistructured interviews were conducted via telephone, video conference and in-person. Using an interview guide, areas such as preparedness of junior doctors for rural practice, areas for further training and confidence with managing emergencies were discussed. Interviews were analysed using the principles of grounded theory. Participant recruitment continued until data saturation was achieved. SETTING: Multiple health facilities across three hospital and health services in North Queensland. PARTICIPANTS: (i) Doctors with current or recent work in rural North Queensland; (ii) doctors involved with rural medical training; and (iii) emergency medicine specialists working in a tertiary referral centre. MAIN OUTCOME MEASURE: Perspectives of doctors on the training needs of rural doctors in North Queensland. RESULTS: Rural doctors were found to be as prepared as they could be to take up rural practice; however, they still had training needs. Region-specific emergencies, access to regular in-house simulations and non-medical challenges, including understanding local team dynamics and taking on a team leader role, were seen as key training needs. Senior doctors indicated that further formal and informal on-the-job training were required for provisional fellows with limited experience in the emergency department. CONCLUSION: Certain training needs of rural doctors still remain unmet. Further access to in-house simulations and tele-training could be useful strategies to meet these training needs to further support rural doctors.

Clinical profile and treatment outcomes of advanced neuroendocrine tumours in rural and regional patients: a retrospective study from a regional cancer centre in North Queensland, Australia.

BACKGROUND: Neuroendocrine tumours (NET) arise from neuroendocrine cells, which are widely distributed throughout the body. However, diagnosing NET is difficult due to nonspecific symptoms and the paucity of experience among health professionals. This retrospective study was carried out to improve our understanding about NET. This knowledge can be used for optimal utilisation and distribution of limited resources. AIM: To study the clinical profile, treatment and survival outcomes for advanced NET patients in Australian regional and remote settings. METHODS: We reviewed all adult patients who were diagnosed with NET between 1994 and 2012. Patients' data were extracted from electronic databases of The Townsville Cancer Centre. Remoteness was based on postcodes, with patients stratified as regional or rural North Queensland according to Australian Standard Geographical Classification (ASGC). Overall survival was studied using survival analysis. RESULTS: Data from 79 patients were included in the study. The median age at diagnosis was 60 years. A total of 48 patients (60.8%) was male and 31 (39.2%) female. The majority of the patients lived in rural areas (51, 64%) as compared to residing in regional areas (28, 36%). There were 34 deaths at the study cut-off point. Median overall survival of NET patients in rural areas is significantly less than those living in regional areas (1613 days vs. 2935 days, respectively), P = 0.03. CONCLUSION: Remoteness has an adverse impact on overall survival of NET patients. This outcome may be because of varied access to health services and/or lack of access to specialised scans and medical and surgical expertise.

Do teleoncology models of care enable safe delivery of chemotherapy in rural towns?

OBJECTIVES: To compare the dose intensity and toxicity profiles for patients undergoing chemotherapy at the Townsville Cancer Centre (TCC), a tertiary cancer centre in northern Queensland, with those for patients treated in Mount Isa, supervised by the same medical oncologists via teleoncology. DESIGN: A quasi-experimental design comparing two patient groups. SETTING: TCC and Mount Isa Hospital, which both operate under the auspices of the Townsville Teleoncology Network (TTN). PARTICIPANTS: Eligible patients who received chemotherapy at TCC or Mt Isa Hospital between 1 May 2007 and 30 April 2012. INTERVENTION: Teleoncology model for managing cancer patients in rural towns. MAIN OUTCOME MEASURES: Dose intensity (doses, number of cycles and lines of treatment) and toxicity rates (rate of serious side effects, hospital admissions and mortality). RESULTS: Over 5 years, 89 patients received a total of 626 cycles of various chemotherapy regimens in Mount Isa. During the same period, 117 patients who received a total of 799 cycles of chemotherapy at TCC were eligible for inclusion in the comparison group. There were no significant differences between the Mount Isa and TCC patients in most demographic characteristics, mean numbers of treatment cycles, dose intensities, proportions of side effects, and hospital admissions. There were no toxicity-related deaths in either group. CONCLUSION: It appears safe to administer chemotherapy in rural towns under the supervision of medical oncologists from larger centres via teleoncology, provided that rural health care resources and governance arrangements are adequate.

Specialist cancer care through telehealth models.

OBJECTIVE: Disparities in outcomes are experienced between people who live in rural and remote areas and those who live in larger cities. This paper explores the ability to deliver specialist cancer care through the use of telehealth models. DESIGN: Review of telehealth models for cancer care. SETTING, PARTICIPANTS AND INTERVENTION: Cancer patients in rural, remote and Indigenous communities who receive their care through telehealth. OUTCOME MEASURES AND RESULTS: Telehealth models seem to be applicable to all fields of oncology and all health professionals. These models not only facilitate the provision of specialist services closer to home in an acceptable, safe and cost-effective manner, but also help expand the rural scope of practice and enhance service capabilities at rural centres. CONCLUSION: New models of telehealth are another avenue to help further decrease the disparity of access and survival outcomes between rural and urban patients. Implementation of these models requires health system wide approach for development key performance indicators and allocation of resources.

Oncology service initiatives and research in regional Australia.

OBJECTIVE: This paper reflects on the recent growth of cancer research being conducted through some of Australia's rural centres. It encompasses work being done across the fields of clinical, translational and health services research. DESIGN: This is a collaborative piece with contributions from rural health researchers, clinical and cancer services staff from several different regions. CONCLUSION: The past decade has seen an expansion in cancer research in rural and regional Australia driven in part by the recognition that cancer patients in remote areas experience poorer outcomes than their metropolitan counterparts. This work has led to the development of more effective cancer networks and new models of care designed to meet the particular needs of the rural cancer patient. It is hoped that the growth of cancer research in regional centres will, in time, reduce the disparity between rural and urban communities and improve outcomes for cancer patients across both populations.

Quality of life in patients with K-RAS wild-type colorectal cancer: the CO.20 phase 3 randomized trial.

BACKGROUND: The CO.20 trial randomized patients with K-RAS wild-type, chemotherapy-refractory, metastatic colorectal cancer to receive cetuximab (CET) plus brivanib alaninate (BRIV) or CET plus placebo (CET/placebo). METHODS: Quality of life (QoL) was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 at baseline and at 2, 4, 6, 8, 12, 16, and 24 weeks until disease progression. Predefined coprimary QoL endpoints were time to deterioration (first worsening from baseline of ≥ 10 points) on the Physical Function (PF) and Global (GHS) scales. RESULTS: Of 750 randomized patients, 721 (358 of whom received CET/BRIV) were assessable for QoL. QoL compliance and baseline PF and GHS scores did not differ by treatment arm. The median time to deterioration was 1.6 months versus 1.1 months for GHS (P =.02) and 5.6 months versus 1.7 months for PF (P <.0001) favoring CET/placebo. Secondary analysis favored CET/placebo for QOL response on the PF, Cognitive Function, Fatigue, Nausea, Appetite, and Diarrhea scales. A greater percentage of patients on the CET/BRIV arm had PF worsening at 6 weeks (31% vs 17%). Clinical adverse events of ≥ grade 3 were more common with CET/BRIV than with CET/placebo, including fatigue (25% vs 11%), hypertension, rash, diarrhea, abdominal pain, dehydration, and anorexia. CONCLUSIONS: Compared with CET/placebo, the combination of CET/BRIV worsened time to QoL deterioration for patients with K-RAS wild-type, chemotherapy-refractory, metastatic colorectal cancer on the PF and GHS scales of European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30. This result may be due to higher rates of fatigue and gastrointestinal adverse events.