Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention.

BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. RESULTS: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.

Fidelity and acceptability of implementation strategies developed for adherence to a clinical pathway for screening, assessment and management of anxiety and depression in adults with cancer.

BACKGROUND: Implementation strategies are crucial to facilitate implementation success. To prepare and support implementation of a clinical pathway for screening, assessment and management of anxiety and depression in cancer patients (the ADAPT CP), six broad categories of implementation strategies; (1) Awareness campaigns, (2) Champions, (3) Education, (4) Academic Detailing and Support, (5) Reporting, (6) Technological Support, were developed. The aim of this paper is to describe the fidelity and acceptability of six categories of implementation strategies and any subsequent changes/adaptations made to those strategies. METHODS: The ADAPT CP was implemented in twelve cancer services in NSW, Australia, as part of a cluster randomised controlled trial of core versus enhanced implementation strategies. Fidelity to and any subsequent changes to the delivery of the planned six categories of implementation strategies were captured using the ADAPT contact log, which recorded the contacts made between the ADAPT research team and services, engagement meetings and monthly meetings. To explore acceptability and awareness/engagement with the implementation strategies, interviews with a purposively selected staff sample across both study arms were held prior to implementation (T0), six months into implementation (T1) and at the end of the 12-month implementation period (T2). Interviews were thematically analysed across the six categories of strategies. RESULTS: Delivery of all six categories of implementation strategies as planned was moderated by service context and resources and staff engagement. As such, for some implementation strategies, subsequent changes or adaptations to the content, mode of delivery, frequency and duration such as abbreviated training sessions, were made to optimise fidelity to and engagement with the strategies. Most strategies were perceived to be acceptable by service staff. Use of strategies prior to implementation of the ADAPT CP such as the engagement meetings and training sessions, positively impacted on ownership and preparedness to implement the ADAPT CP. Furthermore, ongoing support such as provision of additional training or monthly meetings facilitated increased awareness and engagement with the ADAPT program. CONCLUSION: Flexibility in delivering implementation strategies, and ensuring staff engagement with, and acceptability of those strategies, can support implementation of interventions within healthcare settings. TRIAL REGISTRATION: The ADAPT CRCT was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347.  https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true.

International Survey of Psychosocial Care for Cancer Survivors in Low-/Middle- and High-Income Countries: Current Practices, Barriers, and Facilitators to Care.

PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.

Staff- and service-level factors associated with organisational readiness to implement a clinical pathway for the identification, assessment, and management of anxiety and depression in adults with cancer.

BACKGROUND: Organisational readiness is recognised as a key factor impacting the successful translation of research findings into practice. Within psycho-oncology, measuring organisational readiness and understanding factors impacting organisational readiness is crucial as it is often challenging to implement evidence-based findings into routine cancer care. In this quantitative study, we examined the level of organisational readiness of cancer services preparing to implement a clinical pathway for the screening, assessment, and management of anxiety and depression in adult cancer patients (the ADAPT CP) within a cluster randomised controlled trial and sought to identify staff- and service-level factors associated with organisational readiness. METHODS: Multidisciplinary staff across 12 Australian cancer services were identified. Their perceptions of their services' readiness to implement the ADAPT CP in the cancer stream or treatment modality selected within their service was assessed prior to implementation using the Organizational Readiness for Implementing Change scale. Data collection included staff demographic and professional characteristics, and their perception of the ADAPT CP using a set of 13 study-specific survey items. Service characteristics were captured using a site profile audit form and workflows during site engagement. RESULTS: Fourteen staff- and service-level factors were identified as potentially impacting organisational readiness. To identify factors that best explained organisational readiness, separate univariate analyses were conducted for each factor, followed by a backward elimination regression. Compared to services that implemented the ADAPT CP in one treatment modality, those opting for four treatment modalities had significantly higher organisational readiness scores. Staff in administrative/technical support/non-clinical roles had significantly higher organisational readiness scores compared to psychosocial staff. Higher organisational readiness scores were also significantly related to more positive perceptions of the ADAPT CP. CONCLUSIONS: Readiness to implement an anxiety and depression clinical pathway within 12 oncology services was high. This may be attributed to the extensive engagement with services prior to implementation. The factors associated with organisational readiness highlight the importance of ensuring adequate resourcing and supporting staff to implement change, effectively communicating the value of the change, and taking a whole-of-service approach to implementing the change. Future longitudinal studies may identify factors associated with ongoing readiness and engagement prior to implementation. TRIAL REGISTRATION: The ADAPT RCT was registered prospectively with the ANZCTR on 22/03/2017. Trial ID ACTRN12617000411347. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372486&isReview=true .

Psychometric assessment of the Concerns about Late Effects in Oncology Questionnaire (CLEO) among female breast cancer survivors.

OBJECTIVE: The Concerns about Late Effects in Oncology (CLEO) questionnaire was developed to measure concerns cancer survivors may have about late effects. The current study sought to assess the Concerns about Late Effects in Oncology's (CLEO) psychometric properties - factor structure, construct validity, discriminatory power, and internal consistency. METHODS: 147 breast cancer survivors completed a survey. Factor structure was determined by exploratory factor analysis (EFA). Construct validity was assessed against fear of cancer recurrence, anxiety, depression, quality of life, and neuroticism. Discriminatory power was assessed against participants' age and clinical characteristics. RESULTS: The EFA confirmed a 4-factor structure; health professionals' support, psychological impacts, adapting, and daily functional impacts. There was only partial support for construct validity and discriminatory power. The CLEO demonstrated excellent internal consistency, with an overall Cronbach's α = 0.87 (health professionals' support: α = 0.89, psychological impacts: α = 0.93, adapting: α = 0.82, and daily functional impacts: α = 0.89). CONCLUSION: The findings suggest further development of the CLEO should focus on the psychological and functional impacts of late effects. PRACTICE IMPLICATIONS: Use of the CLEO may enhance communication about the impact of late effects, ensuring earlier identification and management of late effects in this population.

Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services.

PURPOSE: This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. METHODS: Using real-time insights from two Cancer Council NSW services-131120 Information and Support Line and Online Community (CCOC) forums-we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. RESULTS: In total, 688 COVID-19-related 131120 calls (n = 496) and online posts (n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. CONCLUSIONS: The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.

Health literacy and cancer care coordination in Chinese migrant patients and their carers: A cross-sectional survey.

OBJECTIVES: This study aimed to describe the levels of health literacy and experience of care coordination among Chinese migrant patients with cancer and their carers in Australia, and to examine factors associated with these. METHODS: Patients' self-reported data were collected using the Health Literacy and Cancer Care Coordination questionnaires. We conducted multivariate linear regression analyses to investigate predictors of patients' health literacy and their care experience. Canonical correlation analysis was used to examine the relationship between patients' health literacy and their care experience. RESULTS: A total of 68 patients and eight carers participated in the survey. Patients and carers reported similar levels of health literacy, with the lowest scores being in the "Having sufficient information to manage health" and "Navigating the health system" subscales. Gender (P = 0.026, partial η2  = 0.281) and educational attainment (P = 0.015, partial η2  = 0.250) had significant and large effects on patients' health literacy, after controlling for each other. Educational attainment showed a significant and medium association with patients' experience of cancer care coordination (P = 0.041, partial η2  = 0.101). A large and positive correlation was found between patients' health literacy and experience of cancer care coordination (canonical correlation = 0.81). CONCLUSIONS: Our findings reveal the health literacy and care coordination needs of Chinese migrant patients with cancer in Australia, especially those with lower educational attainment. Future efforts are necessary to enhance Chinese migrants' health literacy and establish an accessible and easy-to-navigate care environment.

Is care really shared? A systematic review of collaborative care (shared care) interventions for adult cancer patients with depression.

BACKGROUND: Collaborative care involves active engagement of primary care and hospital physicians in shared care of patients beyond usual discharge summaries. This enhances community-based care and reduces dependence on specialists and hospitals. The model, successfully implemented in chronic care management, may have utility for treatment of depression in cancer. The aim of this systematic review was to identify components, delivery and roles and responsibilities within collaborative interventions for depression in the context of cancer. METHODS: Medline, PsycINFO, CINAHL, Embase, Cochrane Library and Central Register for Controlled Trials databases were searched to identify studies of randomised controlled trials comparing a treatment intervention that met the definition of collaborative model of depression care with usual care or other control condition. Studies of adult cancer patients with major depression or a non-bipolar depressive disorder published in English between 2005 and January 2018 were included. Cochrane checklist for risk of bias was completed (Study Prospero registration: CRD42018086515). RESULTS: Of 8 studies identified, none adhered to the definition of 'collaborative care'. Interventions delivered were multi-disciplinary, with care co-ordinated by nurses (n = 5) or social workers (n = 2) under the direction of psychiatrists (n = 7). Care was primarily delivered in cancer centres (n = 5). Care co-ordinators advised primary care physicians (GPs) of medication changes (n = 3) but few studies (n = 2) actively involved GPs in medication prescribing and management. CONCLUSIONS: This review highlighted joint participation of GPs and specialist care physicians in collaborative care depression management is promoted but not achieved in cancer care. Current models reflect hospital-based multi-disciplinary models of care. PROTOCOL REGISTRATION: The protocol for this systematic review has been registered with PROSPERO. The registration number is CRD42018086515.

Comparison of implementation strategies to influence adherence to the clinical pathway for screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP): study protocol of a cluster randomised controlled trial.

BACKGROUND: Health service change is difficult to achieve. One strategy to facilitate such change is the clinical pathway, a guide for clinicians containing a defined set of evidence-based interventions for a specific condition. However, optimal strategies for implementing clinical pathways are not well understood. Building on a strong evidence-base, the Psycho-Oncology Co-operative Research Group (PoCoG) in Australia developed an evidence and consensus-based clinical pathway for screening, assessing and managing cancer-related anxiety and depression (ADAPT CP) and web-based resources to support it - staff training, patient education, cognitive-behavioural therapy and a management system (ADAPT Portal). The ADAPT Portal manages patient screening and prompts staff to follow the recommendations of the ADAPT CP. This study compares the clinical and cost effectiveness of two implementation strategies (varying in resource intensiveness), designed to encourage adherence to the ADAPT CP over a 12-month period. METHODS: This cluster randomised controlled trial will recruit 12 cancer service sites, stratified by size (large versus small), and randomised at site level to a standard (Core) versus supported (Enhanced) implementation strategy. After a 3-month period of site engagement, staff training and site tailoring of the ADAPT CP and Portal, each site will "Go-live", implementing the ADAPT CP for 12 months. During the implementation phase, all eligible patients will be introduced to the ADAPT CP as routine care. Patient participants will be registered on the ADAPT Portal to complete screening for anxiety and depression. Staff will be responsible for responding to prompts to follow the ADAPT CP. The primary outcome will be adherence to the ADAPT CP. Secondary outcomes include staff attitudes to and experiences of following the ADAPT CP, using the ADAPT Portal and being exposed to ADAPT implementation strategies, collected using quantitative and qualitative methods. Data will be collected at T0 (baseline, after site engagement), T1 (6 months post Go-live) and T2 (12 months post Go-live). DISCUSSION: This will be the first cluster randomised trial to establish optimal levels of implementation effort and associated costs to achieve successful uptake of a clinical pathway within cancer care. TRIAL REGISTRATION: The study was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347.

Clinical anxiety disorders in the context of cancer: A scoping review of impact on resource use and healthcare costs.

Prevalence of clinical anxiety among patients with cancer is higher than the general population. Clinical anxiety in people with other medical conditions is associated with greater healthcare resource use and costs. This scoping review describes the evidence relating to costs associated with clinical anxiety in cancer populations. We conducted searches of online databases Medline, Embase, Cinahl, National Health Service Economic Evaluation Database (NHS-EED) and Cochrane Library of systematic reviews to identify studies published between 2006 and 2017 that included healthcare cost in terms of monetary or health service utilisation variables. Of 411 records screened, six studies met inclusion criteria. Only one study used formal diagnostic criteria to identify clinical anxiety. The healthcare system perspective was most common, with direct costs such as medications, hospital visits, type of therapy and use of mental health services reported. All studies found anxiety was related to increased costs/resource use; however, methodological differences mean specific costs and potential impact of interventions on resource use remain relatively unquantified. Despite the prevalence of clinical anxiety, there is little data on the economic impact on health service costs and utilisation. Future studies quantifying the true cost are urgently needed to inform healthcare service planning and delivery, and quality improvement initiatives.

Costs and returns on training investment for empirically supported psychological interventions.

Objective Financial costs are a significant barrier to the uptake of empirically supported psychological interventions in clinical settings. Training may be among the largest of these costs; however, the potential magnitude of these costs is unclear. The aim of the present study was to develop a hypothetical model of potential training costs associated with adopting a novel therapy using systematic review of anticipated training durations and publicly available data on workshop costs, training materials and income. Methods Direct and indirect costs were estimated for reference categories being cognitive behavioural therapy for social anxiety disorder delivered by registered psychologists. These were based on averages of 39 workshops and eight treatment manuals available in Australia identified through online searches. Results This model demonstrated that upper cost ranges for training can exceed A$55000, and even didactic training (reading manuals, attending workshops) may cost up to A$9000. Indirect costs of forfeited income account for a substantial proportion of these costs. Conclusions This hypothetical model highlights why training costs should be considered in decisions about disseminating and implementing novel empirically supported psychological interventions, particularly within private workforces. In addition, the direct return on training investment for practitioners in private practice is unclear, and may vary based on caseloads and current treatment modalities. Initiatives to track competence, support training and identify novel training solutions may be required to ensure the sustainability of high-quality mental healthcare. What is known about the topic? Financial costs are one of the leading factors determining whether empirically supported mental health treatments are adopted or sustained. Training costs may be one of the largest costs of disseminating and implementing novel psychological therapies within existing workforces, including both direct (e.g. workshop fees) and indirect (e.g. lost income) costs. However, little is understood about the potential magnitude of these costs. What does this paper add? This paper presents a hypothetical modelling of potential costs associated with adopting a novel therapy, with reference categories for an empirically supported treatment (cognitive behaviour therapy) for one mental disorder (social anxiety disorder) for one mental health profession (psychologist). This model was developed and populated using systematic review of anticipated training durations and publicly available data on workshop costs, training materials and income. What are the implications for practitioners? With potential costs for adopting one novel psychological intervention exceeding A$55000, we highlight why training costs and pathways should be a focal point for ensuring the sustainable provision of high-quality mental healthcare in Australia.

It's all good on the surface: care coordination experiences of migrant cancer patients in Australia.

PURPOSE: Migrants diagnosed with cancer in Australia have high unmet need and poorer psychosocial outcomes than comparable Australian-born patients. It is possible that migrants also experience worse coordination of their cancer care. The purpose of this study was to describe migrant patients' experience of care coordination to inform the development of items for inclusion in a cancer care coordination questionnaire sensitive to the specific cultural needs of these patients. METHODS: Eighteen Chinese (Mandarin and Cantonese), Arabic and Macedonian patients and carers from two metropolitan cancer centres in Sydney, Australia, were recruited. Two focus groups and 11 telephone interviews were conducted in the participants' own language. A semi-structured interview format was utilised to qualitatively explore participants' experiences of cancer care coordination during treatment. Themes were identified using a thematic analysis. RESULTS: Cancer care was generally perceived to be well coordinated. Four themes were identified that impacted on the quality of care coordination as a direct result of a patient's migrant status: (1) the impact of language on understanding and information access, (2) the role of interpreters and (3) access to services and (4) understanding the roles and responsibilities of the team. CONCLUSIONS: Despite their care generally being well coordinated, migrants require additional assistance such as information in a form appropriate to their language proficiency and understanding of the new health system. Development of a culturally specific measure of cancer care coordination will enable evaluation of future strategies to improve care.

Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients: Australian guidelines.

PURPOSE: A clinical pathway for anxiety and depression in adult cancer patients was developed to guide best practice in Australia. METHODS: The pathway was based on a rapid review of existing guidelines, systematic reviews and meta-analyses, stakeholder interviews, a Delphi process with 87 multidisciplinary stakeholders and input from a multidisciplinary advisory panel. RESULTS: The pathway recommends formalized routine screening for anxiety and depression in patients with cancer at key points in the patient's journey. The Edmonton Symptom Assessment System or distress thermometer with problem checklist is recommended as brief screening tools, combined with a more detailed tool, such as the Hospital Anxiety and Depression Scale, to identify possible cases. A structured clinical interview will be required to confirm diagnosis. When anxiety or depression is identified, it is recommended that one person in a treating team takes responsibility for coordinating appropriate assessment, referral and follow-up (not necessarily carrying these out themselves). A stepped care model of intervention is proposed, beginning with the least intensive available that is still likely to provide significant health gain. The exact intervention, treatment length and follow-up timelines, as well as professionals involved, are provided as a guide only. Each service should identify their own referral network based on local resources and current service structure, as well as patient preference. DISCUSSION: This clinical pathway will assist cancer services to design their own systems to detect and manage anxiety and depression in their patients, to improve the quality of care.

Delivery of telephone-based supportive care to people with cancer: An analysis of cancer helpline operator and cancer nurse communication.

OBJECTIVES: Telephone-based supportive care presents a potentially highly accessible means of addressing unmet supportive care needs for people with cancer. Identification of behaviours that facilitate communication is essential for development of training for telephone-based supportive care. The aim of this study was to describe communication behaviours within supportive care telephone calls in two contexts (1) a telephone outreach intervention and (2) cancer helpline calls, to identify potential areas for further training. METHODS: 50 recorded calls were analysed using two standardised coding systems: the RIAS and Verona-CoDES-C. RESULTS: Mean call length was 21 min (304 utterances) for nurse-outreach calls and 23 min (355 utterances) for helpline calls. Closed questioning, verbal attentiveness and giving information/counselling were the most common communication behaviours identified. Emotional cues were most commonly responded to through non-explicit back-channelling, exploration of content or provision of reassurance or advice. CONCLUSIONS: This study confirmed the need to address the manner in which questions are framed to maximise patient disclosure. Responding to patent emotional cues was highlighted as an area for future training focus. PRACTICE IMPLICATIONS: Communication skills training that addresses each of these tasks is likely to improve the effectiveness of telephone-based delivery of supportive care.

Reducing disparity in outcomes for immigrants with cancer: a qualitative assessment of the feasibility and acceptability of a culturally targeted telephone-based supportive care intervention.

PURPOSE: Australia has one of the most culturally diverse populations in the world. Immigrant cancer patients' poorer outcomes compared to English-speaking patients confirm the need for culturally sensitive supportive care interventions. The aims of this study were (1) to identify cultural sensitivities that are important to the acceptability of a telephone-based supportive care intervention and (2) to identify cultural barriers and facilitators to intervention participation. METHODS: Patients and carers attending Chinese or Arabic cancer support groups were recruited. Two focus groups comprising 12 patients and 4 carers, and two telephone interviews were conducted in the participants' own language. A semi-structured interview format was utilised to determine potential cultural sensitivities that may influence the intervention delivery format as well as patients' willingness to participate in telephone-based supportive care interventions. Content analysis confirmed similar themes across groups. RESULTS: The intervention was viewed favourably as a means of providing information and support in the patient's language. Cultural considerations included assurances of confidentiality, as cancer is not openly discussed within communities. An initial face-to-face contact was highlighted as the most important factor facilitating participation. Participants also recommended the inclusion of patient-initiated calls as part of the intervention. CONCLUSIONS: This study provides cultural insights relevant to the development of a culturally sensitive telephone-based supportive care intervention for Arabic- and Chinese-speaking cancer patients. Participants highlighted the need for face-to-face contact and inclusion of patient-initiated calls as important methodological considerations.

Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers' role perception and supportive care needs.

BACKGROUND: Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time. METHODS: Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview. RESULTS: Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers' lack of understanding of the health system. Family caregivers view their role as part of their family responsibility. CONCLUSIONS: This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer.