The impact of management option on out-of-pocket costs and perceived financial burden among men with localised prostate cancer in Australia within 6 months of diagnosis.

Objective This study aimed to quantify the out-of-pocket (OOP) costs and perceived financial burden among Australian men with localised prostate cancer in the first 6 months after diagnosis, by primary management option. Methods This cost-analysis quantified OOP costs using administrative claims data and self-reported survey data. Financial burden was assessed using the COmprehensive Score for financial Toxicity-Functional Assessment of Chronic Illness Therapy (COST-FACIT) tool. Participants were recruited into a randomised control trial from public or private treatment centres in Victoria and Queensland. Generalised linear models were used to predict OOP costs and COST-FACIT scores. Results Median total OOP costs within 6 months of diagnosis for 256 Australian patients with localised prostate cancer was A$1172 (A$343-2548). Up to 50% of the sample reported A$0 costs for most medical services. Compared with those managed with active surveillance, men having active treatment had 6.4 (95% CI: 3.2-12.7) times greater total OOP costs. Management option, higher Gleason score at diagnosis and having multiple comorbidities were significant predictors of higher OOP costs. Overall high scores on the COST-FACIT indicated low levels of financial burden for the entire sample. Conclusion Largely attributable to being managed with active surveillance, Australian men diagnosed with localised prostate cancer reported relatively low OOP costs and financial burden in the first 6 months post-diagnosis. Together with clinical outcomes, clinicians can use this up to date evidence on costs and perceived financial burdens to assist localised prostate cancer patients and their families make informed decisions about their preferred management option.

Lessons for Vietnam on the Use of Digital Technologies to Support Patient-Centered Care in Low- and Middle-Income Countries in the Asia-Pacific Region: Scoping Review.

BACKGROUND: A rapidly aging population, a shifting disease burden and the ongoing threat of infectious disease outbreaks pose major concerns for Vietnam's health care system. Health disparities are evident in many parts of the country, especially in rural areas, and the population faces inequitable access to patient-centered health care. Vietnam must therefore explore and implement advanced solutions to the provision of patient-centered care, with a view to reducing pressures on the health care system simultaneously. The use of digital health technologies (DHTs) may be one of these solutions. OBJECTIVE: This study aimed to identify the application of DHTs to support the provision of patient-centered care in low- and middle-income countries in the Asia-Pacific region (APR) and to draw lessons for Vietnam. METHODS: A scoping review was undertaken. Systematic searches of 7 databases were conducted in January 2022 to identify publications on DHTs and patient-centered care in the APR. Thematic analysis was conducted, and DHTs were classified using the National Institute for Health and Care Excellence evidence standards framework for DHTs (tiers A, B, and C). Reporting was in line with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. RESULTS: Of the 264 publications identified, 45 (17%) met the inclusion criteria. The majority of the DHTs were classified as tier C (15/33, 45%), followed by tier B (14/33, 42%) and tier A (4/33, 12%). At an individual level, DHTs increased accessibility of health care and health-related information, supported individuals in self-management, and led to improvements in clinical and quality-of-life outcomes. At a systems level, DHTs supported patient-centered outcomes by increasing efficiency, reducing strain on health care resources, and supporting patient-centered clinical practice. The most frequently reported enablers for the use of DHTs for patient-centered care included alignment of DHTs with users' individual needs, ease of use, availability of direct support from health care professionals, provision of technical support as well as user education and training, appropriate governance of privacy and security, and cross-sectorial collaboration. Common barriers included low user literacy and digital literacy, limited user access to DHT infrastructure, and a lack of policies and protocols to guide the implementation and use of DHTs. CONCLUSIONS: The use of DHTs is a viable option to increase equitable access to quality, patient-centered care across Vietnam and simultaneously reduce pressures on the health care system. Vietnam can take advantage of the lessons learned by other low- and middle-income countries in the APR when developing a national road map to digital health transformation. Recommendations that Vietnamese policy makers may consider include emphasizing stakeholder engagement, strengthening digital literacy, supporting the improvement of DHT infrastructure, increasing cross-sectorial collaboration, strengthening governance of cybersecurity, and leading the way in DHT uptake.

Uncertainty and the unmet informational needs of patients with cancer of unknown primary (CUP): a cross-sectional multi-site study.

OBJECTIVE: This study aimed to determine the healthcare experiences, quality of life, and psychosocial needs of patients with cancer of unknown primary (CUP) early after diagnosis; comparing their experiences to patients with advanced cancer of a known primary (non-CUP control patients) and published general population reference data where available. METHODS: This study was a cross-sectional, multi-site study comparing CUP patients (n = 139) compared to non-CUP controls (n = 45). Demographic, clinical information and patient-reported outcome questionnaire data were collected at baseline. RESULTS: Differences in healthcare experienced were found between CUP and non-CUP controls with CUP patients reporting higher scores for unmet medical communication/information needs compared with non-CUP control patients (p = 0.013) as well as greater uncertainty in illness (p = 0.042). Whilst no differences were found between CUP and non-CUP controls on the EORTC and PROMIS measures, of those that 'received written information about your cancer…' and asked '…how useful was it?' fewer CUP patients reported finding the information useful 40% vs 61%, and more were likely to not have received written information at all 59% vs 32%; (p = 0.002). Additionally, of those that found information about their cancer online, fewer patients with CUP reported finding it useful 32% vs 48% control patients (p = 0.005). CONCLUSIONS: CUP patients have unmet medical communication/information needs and greater uncertainty in illness but do not differ in health-related quality of life domains compared to patients with advanced cancer of a known primary.

Patient-Centered Care: Transforming the Health Care System in Vietnam With Support of Digital Health Technology.

BACKGROUND: Over the recent decades, Vietnam has attained remarkable achievements in all areas of health care. However, shortcomings including health disparities persist particularly with a rapidly aging population. This has resulted in a shift in the disease burden from communicable to noncommunicable diseases such as dementia, cancer, and diabetes. These medical conditions require long-term care, which causes an accelerating crisis for the health sector and society. The current health care system in Vietnam is unlikely to cope with these challenges. OBJECTIVE: The aim of this paper was to explore the opportunities, challenges, and necessary conditions for Vietnam in transforming toward a patient-centered care model to produce better health for people and reduce health care costs. METHODS: We examine the applicability of a personalized and integrated Bespoke Health Care System (BHS) for Vietnam using a strength, weakness, opportunity, and threat analysis and examining the successes or failures of digital health care innovations in Vietnam. We then make suggestions for successful adoption of the BHS model in Vietnam. RESULTS: The BHS model of patient-centered care empowers patients to become active participants in their own health care. Vietnam's current policy, social, technological, and economic environment favors the transition of its health care system toward the BHS model. Nevertheless, the country is in an early stage of health care digitalization. The legal and regulatory system to protect patient privacy and information security is still lacking. The readiness to implement electronic medical records, a core element of the BHS, varies across health providers and clinical practices. The scarcity of empirical evidence and evaluation regarding the effectiveness and sustainability of digital health initiatives is an obstacle to the Vietnamese government in policymaking, development, and implementation of health care digitalization. CONCLUSIONS: Implementing a personalized and integrated health care system may help Vietnam to address health care needs, reduce pressure on the health care system and society, improve health care delivery, and promote health equity. However, in order to adopt the patient-centered care system and digitalized health care, a whole-system approach in transformation and operation with a co-design in the whole span of a digital health initiative developing process are necessary.

Assessing the cost-effectiveness of RT Prepare: A radiation therapist-delivered intervention for reducing psychological distress prior to radiotherapy.

OBJECTIVE: To determine the cost-effectiveness of RT Prepare in reducing breast cancer patients' psychological distress before treatment, compared with usual care. METHODS: RT Prepare, an intervention involving patient education and support consultations with a radiation therapist (RT), was implemented at three Australian sites (Australian New Zealand Clinical Trials Registration: ACTRN12611001000998). The primary outcome was change in psychological distress using the Hospital Anxiety and Depression Scale (HADS); secondary outcomes were changes in quality of life (QoL) and additional health service use. Costs (2015 $AU) included consultation time and training delivery. Between-group comparisons of HADS and QoL used generalised linear mixed models, and comparisons of health service use used negative binomial regression. Incremental cost-effectiveness ratios (ICERs) indicated mean costs per 1-point decrease in HADS score. Sensitivity analyses explored variation in facility size and uncertainty in intervention effectiveness. RESULTS: Among 218 controls and 189 intervention participants, the intervention significantly lowered HADS scores at treatment commencement (adjusted mean difference 1.06 points). There was no significant effect on QoL or additional service use. Mean intervention costs were AU$171 per participant (US$130, €119) mostly related to RT training (approximately AU$142 (US$108, €99). An ICER of $158 (US$120, €110) was estimated. Cost-effectiveness improved in a sensitivity analysis representing a large facility with higher patient numbers. CONCLUSION: This study provides new data on the cost-effectiveness of an RT-delivered intervention to reduce psychological distress prior to treatment, which will be useful to inform delivery of similar services. As most costs were upfront, cost-effectiveness would likely improve if implemented as standard care.

Online information and support needs of women with advanced breast cancer: a qualitative analysis.

PURPOSE: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face-to-face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. METHODS: Women with ABC participated in telephone interviews about their information and support-seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. RESULTS: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individual circumstances and preferences. CONCLUSIONS: Adaptation of an existing online intervention for early stage cancer appears to be a promising avenue to address the information and support needs of women with ABC.

Mobile Health Intervention to Increase Oral Cancer Therapy Adherence in Patients With Chronic Myeloid Leukemia (The REMIND System): Clinical Feasibility and Acceptability Assessment.

BACKGROUND: Optimal dosing of oral tyrosine kinase inhibitor therapy is critical to treatment success and survival of patients with chronic myeloid leukemia (CML). Drug intolerance secondary to toxicities and nonadherence are significant factors in treatment failure. OBJECTIVE: The objective of this study was to develop and pilot-test the clinical feasibility and acceptability of a mobile health system (REMIND) to increase oral drug adherence and patient symptom self-management among people with CML (chronic phase). METHODS: A multifaceted intervention was iteratively developed using the intervention development framework by Schofield and Chambers, consisting of defining the patient problem and iteratively refining the intervention. The clinical feasibility and acceptability were examined via patient and intervention nurse interviews, which were audiotaped, transcribed, and deductively content analyzed. RESULTS: The intervention comprised 2 synergistically operating elements: (1) daily medication reminders and routine assessment of side effects with evidence-based self-care advice delivered in real time and (2) question prompt list (QPL) questions and routinely collected individual patient adherence and side effect profile data used to shape nurses' consultations, which employed motivational interviewing to support adoption of self-management behaviors. A total of 4 consultations and daily alerts and advice were delivered over 10 weeks. In total, 58% (10/17) of patients and 2 nurses participated in the pilot study. Patients reported several benefits of the intervention: help in establishing medication routines, resolution of symptom uncertainty, increased awareness of self-care, and informed decision making. Nurses also endorsed the intervention: it assisted in establishing pill-taking routines and patients developing effective solutions to adherence challenges. CONCLUSIONS: The REMIND system with nurse support was usable and acceptable to both patients and nurses. It has the potential to improve adherence and side-effect management and should be further evaluated.

Communication challenges experienced by migrants with cancer: A comparison of migrant and English-speaking Australian-born cancer patients.

OBJECTIVES: Understanding the difficulties faced by different migrant groups is vital to address disparities and inform targeted health-care service delivery. Migrant oncology patients experience increased morbidity, mortality and psychological distress, with this tentatively linked to language and communication difficulties. The objective of this exploratory study was to investigate the communication barriers and challenges experienced by Arabic, Greek and Chinese (Mandarin and Cantonese) speaking oncology patients in Australia. METHODS: This study employed a cross-sectional design using patient-reported outcome survey data from migrant and English-speaking Australian-born patients with cancer. Patients were recruited through oncology clinics and Australian state cancer registries. Data were collected regarding patient clinical and demographic characteristics and health-care and communication experiences. Data from the clinics and registries were combined for analysis. RESULTS: Significant differences were found between migrant groups in demographic characteristics, communication and health-care experiences, and information and care preferences. Chinese patients cited problems with understanding medical information, the Australian health-care system, and communicating with their health-care team. Conversely, Arabic- and Greek-speaking patients reported higher understanding of the health-care system, and less communication difficulties. CONCLUSIONS: Our study findings suggest that migrant groups differ from each other in their health communication expectations and requirements. Lower education and health literacy of some groups may play a role in poorer health outcomes. Public health interventions and assistance provided to migrants should be tailored to the specific needs and characteristics of that language or cultural group. Future research directions are discussed.

The Patient Remote Intervention and Symptom Management System (PRISMS) - a Telehealth- mediated intervention enabling real-time monitoring of chemotherapy side-effects in patients with haematological malignancies: study protocol for a randomised controlled trial.

BACKGROUND: Outpatient chemotherapy is a core treatment for haematological malignancies; however, its toxicities frequently lead to distressing/potentially life-threatening side-effects (neutropenia/infection, nausea/vomiting, mucositis, constipation/diarrhoea, fatigue). Early detection/management of side-effects is vital to improve patient outcomes, decrease morbidity and limit lengthy/costly hospital admissions. The ability to capture patient-reported health data in real-time, is regarded as the 'gold-standard' to allow rapid clinical decision-making/intervention. This paper presents the protocol for a Phase 3 multi-site randomised controlled trial evaluating a novel nurse-led Telehealth intervention for remote monitoring/management of chemotherapy side-effects in Australian haematological cancer patients. METHODS/DESIGN: Two hundred and twenty-two patients will be recruited from two hospitals. Eligibility criteria include: diagnosis of chronic lymphocytic leukaemia/Hodgkin's/non-Hodgkin's lymphoma; aged ≥ 18 years; receiving ≥ 2 cycles chemotherapy. Patients will be randomised 1:1 to either the control or intervention arm with stratification by diagnosis, chemotherapy toxicity (high versus low), receipt of previous chemotherapy and hospital. Patients allocated to the control arm will receive 'Usual Care' whilst those allocated to the intervention will receive the intervention in addition to 'Usual Care'. Intervention patients will be provided with a computer tablet and software prompting twice-daily completion of physical/emotional scales for up to four chemotherapy cycles. Should patient data exceed pre-determined limits an Email alert is delivered to the treatment team, prompting nurses to view patient data, and contact the patient to provide clinical intervention. In addition, six scheduled nursing interventions will be completed to educate/support patients in use of the software. Patient outcomes will be measured cyclically (midpoint and end of cycles) via pen-and-paper self-report alongside review of the patient medical record. The primary outcome is burden due to nausea, mucositis, constipation and fatigue. Secondary outcomes include: burden due to vomiting and diarrhoea; psychological distress; ability to self-manage health; level of cancer information/support needs and; utilisation of health services. Analyses will be intention-to-treat. A cost-effectiveness analysis is planned. DISCUSSION: This trial is the first in the world to test a remote monitoring/management intervention for adult haematological cancer patients receiving chemotherapy. Future use of such interventions have the potential to improve patient outcomes/safety and decrease health care costs by enabling early detection/clinical intervention. TRIAL REGISTRATION: ACTRN12614000516684 . Date registered: 12 March 2014 (registered retrospectively).

Effective, clinically feasible and sustainable: Key design features of psycho-educational and supportive care interventions to promote individualised self-management in cancer care.

UNLABELLED: As the global burden of cancer increases healthcare services will face increasing challenges in meet the complex needs of these patients, their families and the communities in which they live. This raises the question of how to meet patient need where direct clinical contact may be constrained or not readily available. Patients and families require resources and skills to manage their illness outside of the hospital setting within their own communities. AIM: To propose a framework for the development and delivery of psycho-educational and supportive care interventions drawing on theoretical principles of behaviour change and evidence-based interventions, and based on extensive experience in developing and testing complex interventions in oncology. APPROACH: At the core of this intervention framework are considerations of efficiency: interventions are designed to cater for individuals' unique needs; to place minimal demands on the health system infrastructure and to be rapidly disseminated into usual care if successful. There are seven key features: 1) Targeting cancer type and stage; 2) Tailoring to unique individual needs; 3) Promotion of patient self-management of their disease and treatment side effects; 4) Efficient delivery of the intervention; 5) Training and adherence to protocol; 6) Ensuring the intervention is evidence-based; 7) Confirming stakeholder acceptability of the intervention. APPLICATION: A case study of a randomised controlled trial which tested psycho-educational oncology interventions using this framework is presented. These interventions were designed to cater for individuals' unique needs and promote self-management while placing minimal demands on the acute health care setting. DISCUSSION: Innovative ways to realise the potentially major impact that psycho-educational and supportive care interventions can have on psychological morbidity, coping, symptoms and quality of life in serious and chronic illness are needed. This framework, which is driven by theory, evidence, and experience, is designed to ensure that interventions are effective, clinically feasible and sustainable.

Protocol for the ProCare Trial: a phase II randomised controlled trial of shared care for follow-up of men with prostate cancer.

INTRODUCTION: Men with prostate cancer require long-term follow-up to monitor disease progression and manage common adverse physical and psychosocial consequences of treatment. There is growing recognition of the potential role of primary care in cancer follow-up. This paper describes the protocol for a phase II multisite randomised controlled trial of a novel model of shared care for the follow-up of men after completing treatment for low-moderate risk prostate cancer. METHODS AND ANALYSIS: The intervention is a shared care model of follow-up visits in the first 12 months after completing treatment for prostate cancer with the following specific components: a survivorship care plan, general practitioner (GP) management guidelines, register and recall systems, screening for distress and unmet needs and patient information resources. Eligible men will have completed surgery and/or radiotherapy for low-moderate risk prostate cancer within the previous 8 weeks and have a GP who consents to participate. Ninety men will be randomised to the intervention or current hospital follow-up care. Study outcome measures will be collected at baseline, 3, 6 and 12 months and include anxiety, depression, unmet needs, prostate cancer-specific quality of life and satisfaction with care. Clinical processes and healthcare resource usage will also be measured. The principal emphasis of the analysis will be on obtaining estimates of the treatment effect size and assessing feasibility in order to inform the design of a subsequent phase III trial. ETHICS AND DISSEMINATION: Ethics approval has been granted by the University of Western Australia and from all hospital recruitment sites in Western Australia and Victoria. RESULTS: of this phase II trial will be reported in peer-reviewed publications and in conference presentations. TRIAL REGISTRATION: Australian New Zealand Clinical Trial Registry ACTRN12610000938000.

A tailored, supportive care intervention using systematic assessment designed for people with inoperable lung cancer: a randomised controlled trial.

OBJECTIVE: People with inoperable lung cancer experience higher levels of distress, more unmet needs and symptoms than other cancer patients. There is an urgent need to test innovative approaches to improve psychosocial and symptom outcomes in this group. This study tested the hypothesis that a tailored, multidisciplinary supportive care programme based on systematic needs assessment would reduce perceived unmet needs and distress and improve quality of life. METHODS: A randomised controlled trial design was used. The tailored intervention comprised two sessions at treatment commencement and completion. Sessions included a self-completed needs assessment, active listening, self-care education and communication of unmet psychosocial and symptom needs to the multidisciplinary team for management and referral. Outcomes were assessed with the Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale, Distress Thermometer and European Organization of Research and Treatment of Cancer Quality of Life Q-C30 V2.0. RESULTS: One hundred and eight patients with a diagnosis of inoperable lung or pleural cancer (including mesothelioma) were recruited from a specialist facility before the trial closed prematurely (original target 200). None of the primary contrasts of interest were significant (all p > 0.10), although change score analysis indicated a relative benefit from the intervention for unmet symptom needs at 8 and 12 weeks post-assessment (effect size = 0.55 and 0.40, respectively). CONCLUSION: Although a novel approach, the hypothesis that the intervention would benefit perceived unmet needs, psychological morbidity, distress and health-related quality of life was not supported overall.

Validation of the needs assessment for advanced lung cancer patients (NA-ALCP).

OBJECTIVE: The Needs Assessment for Advanced Cancer Patients (NA-ACP) is a 132-item self-report questionnaire designed to assess the seven needs domains of patients with advanced, incurable cancer. This study aimed to evaluate the short derivative form of that questionnaire with advanced lung cancer patients. METHODS: Item factor loadings, item test-retest data and response distributions were used to retain or reject items from the original NA-ACP scale. This resulted in 38 items being maintained, preserving the original subscales. The response scale was simplified following feedback from patients. 108 people with advanced lung cancer completed the shortened NA-ALCP along with measures of psychological distress (HADS, DT) and quality of life (EORTC QLQ-C30). A-priori predictions were made for divergent and convergent validity. RESULTS: Internal consistency coefficients were satisfactory for six of seven subscales, range 0.71-0.95. Correlations between NA-ALCP and HADS, DT and EORTC-QLQ-C30 provided support for 11 of the 22 divergent (r = 0.13-0.27) and convergent predictions (r = 0.45-0.71). CONCLUSIONS: Subscales of the NA-ALCP demonstrated internal reliability consistent with the original scale. Results provided supporting evidence for divergent and convergent validity. This study indicates that the NA-ALCP is psychometrically robust, easily understood and one-quarter the length of the original version.

The relationship between unmet needs and distress amongst young people with cancer.

PURPOSE: Most psychosocial research in cancer has been restricted to paediatric or older adult populations. This study aimed to explore psychological distress and unmet needs in adolescents and young adults (AYA) with cancer and identify predictors of distress among demographic and illness characteristics and supportive care needs. METHODS: Fifty-three patients between 16 and 30 years completed a cross-sectional survey, administered shortly after presentation to an AYA oncology service and within 4 months of diagnosis. Measures included the Beck Depression Inventory-Fast Screen (BDI-FS), State-Trait Anxiety Inventory-State Form (STAI-S) and the Supportive Care Needs Survey. Level of distress-related sypmtomatology in this population was based on previous work, whereby a cut-off score of 4 or greater was used for the BDI-FS, and one standard deviation above the sample population mean was used for the STAI-S. RESULTS: Prevalence of distress (25%) was lower than that found previously in AYA with cancer. Physical and daily living needs were the most frequently unmet needs overall, followed by psychological needs, health system and information needs and care and support needs. Lastly, being pre-treatment predicted increased depression and state anxiety, while having treatment post-surgery predicted reduced state anxiety. After controlling for treatment status, however, the main predictors of depression and state anxiety were physical and daily living needs and health system and information needs, respectively. CONCLUSIONS: Lower levels of distress and unmet psychological needs were related to the few participants (17%) in this study who were pre-treatment, when distress was most likely. However, physical needs and information needs, which are almost inevitable throughout treatment and beyond, were more important predictors of distress. Further exploration must consider the psychosocial difficulties underlying this association and the needs of AYA at transitions between critical periods in their cancer journey (i.e., upon diagnosis, during treatment, etc.).

Unmet needs and distress in people with inoperable lung cancer at the commencement of treatment.

PURPOSE: People with lung cancer report a higher burden of unmet needs, specifically psychological and daily living unmet needs. They experience more psychological distress and more physical hardship than other tumour sites. This study examined the levels of unmet need and psychological distress in inoperable lung cancer patients at the start of treatment. METHODS: A cross-section survey methodology was employed using baseline data from a randomised controlled trial designed to evaluate a supportive care intervention. Eligible lung cancer patients were approached to participate at the start of treatment. Consenting patients completed questionnaires prior to or just after the commencement of treatment. Reliable and valid measures included Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale and Brief Distress Thermometer. RESULTS: Of the 108 patients participating, the top unmet need was 'Dealing with concerns about your family's fears and worries' (62%); with the next four also coming from the psychological/emotional domain, but, on average, most needs related to medical communication. Thirty two percent of patients reported clinical or subclinical anxiety and 19% reported HADS scores suggestive of clinical or subclinical depression. Moreover, 39.8% of the sample reported distress above the cut-off on the distress thermometer and this was associated with higher needs for each need subscale (p < 0.05). CONCLUSIONS: People with lung cancer have high levels of unmet needs especially regarding psychological/emotional or medical communication. People with lung cancer who are classified as distressed have more unmet needs.

What should a support program for people with lung cancer look like? Differing attitudes of patients and support group facilitators.

INTRODUCTION: Patients with lung cancer have higher levels of unmet need for psychosocial support than those with other cancers. However, uptake of existing support programs by patients with lung cancer is low. We explored this issue by seeking the views of patients and support group facilitators. METHODS: Surveys of a convenience sample of 100 patients with lung cancer and all support group facilitators registered with Cancer Council Victoria (n = 145) were performed. Respondents were asked about preferred content, location, running, and potential barriers to attendance of a lung cancer support program. RESULTS: The response rate from facilitators was 51%. Fifty-three percent of patients reported willingness to attend a support program, although only 12% had previously attended a group. Patients showed a preference for any program to be held at a hospital (p = 0.01), whereas facilitators preferred a community setting (p < 0.001). Patients preferred facilitation by a health professional, rather than a volunteer p < 0.001), whereas facilitators preferred a volunteer. Patients preferred sessions primarily focused on cancer information provision rather than emotional support, whereas facilitators rated emotional support as highly as cancer information. Overall, patients perceived fewer barriers to attendance than facilitators. Both agreed that a group environment, discussing their cancer, parking, and travel were barriers to attendance. CONCLUSIONS: Disparities in the views of patients and facilitators about the preferred location, type of facilitator, and content of a support program may in part explain the poor uptake of existing support programs by patients with lung cancer and should be considered in the design of future programs.

To tell or not to tell: the community wants to know about expensive anticancer drugs as a potential treatment option.

PURPOSE: Many new cancer treatments are available only at significant financial cost to the patient. We previously reported that Australian medical oncologists commonly do not discuss unsubsidized, expensive anticancer drugs (EACD) because of concern about causing distress. We argued that this position was not consistent with modern ethical principals but wanted to seek the community viewpoint. METHODS: A cross-sectional telephone survey of the Australian general public was performed. Respondents' views were sought about three hypothetical scenarios in which they were diagnosed with incurable cancer and an EACD treatment (out-of-pocket cost US$25,000) was available. RESULTS: Responses were obtained from 1,255 respondents (response rate, 43%). One hundred thirty-seven (11%) had a prior cancer diagnosis. Ninety-one percent of respondents wanted to be told by their doctor about an EACD that could improve survival by an additional 4 to 6 months, with 51% prepared to pay for it. People were more willing to pay if the drug could improve quality of life (71%) or if there was no effective standard treatment (76%). Sixty-eight percent believed the government should pay. Cost would be a significant financial burden for 31% of those willing to pay. Those more likely to want to be informed were younger, employed, better-educated, or had higher income levels (P < .05). Responses did not vary with the person's personal experience of cancer. Of the 9% who did not wish to be informed, half of these were concerned about the information causing distress. CONCLUSION: The Australian general public wants to be informed about EACD as potential treatment options, even if they are not willing or readily able to pay for them.