Cancer Care Coordination Research Articles

Distributed Cognition for Improving Cancer Care Coordination

Our health care system uses sophisticated cancer therapies, treatment technologies and facilities, and has dedicated and talented cancer specialists. Effective use of these innovations requires coordination of many diffuse components. For example, transitions between steps of care involve multiple actors and institutions, with distinct sets of information, procedures, policies, practices and knowledge. As Taplin and Rodgers note (2010:108), “[i]t takes the entire care process to achieve optimal cancer care. Screening is of no value without a diagnosis, and diagnosis does not improve outcome without access to comprehensive and effective treatment. This seems obvious but the care process is not studied that way.” In cancer care, coordinating across the many providers and with the patient and family members, is challenging. A human factors and systems-based approach to improving that coordination has potential to improve patient outcomes.

Cancer care coordination: opportunities for healthcare delivery research.

In this commentary, we discuss opportunities to explore issues related to care coordination at three points on the cancer care continuum: (1) screening, particularly coordinating follow-up for abnormal findings, (2) active treatment, particularly challenges for patients with multiple chronic conditions, and (3) survivorship, particularly issues related to facilitating shared care between oncology and primary care. For each point on the continuum, we briefly summarize some of the important coordination issues and discuss potential avenues for future research in the context of existing evidence.

I-CoPE: A pilot study of structured supportive care delivery to people with newly diagnosed high-grade glioma and their carers.

There is limited evidence to guide best approaches to supportive care delivery to patients with high-grade glioma. I-CoPE (Information, Coordination, Preparation and Emotional) is a structured supportive care approach for people with newly diagnosed high-grade glioma and their family carers. Delivered by a cancer care coordinator, I-CoPE consists of (1) staged information, (2) regular screening for needs, (3) communication and coordination, and (4) family carer engagement. This pilot study tested acceptability and preliminary effectiveness of I-CoPE, delivered over 3 transitions in the illness course, for people newly diagnosed with high-grade glioma and their carers. I-CoPE was delivered at the identified transition times (at diagnosis, following the diagnostic hospitalization, following radiotherapy), with associated data collection (enrollment, 2 weeks, 12 weeks). Outcomes of interest included: acceptability/feasibility (primary); quality of life; needs for support; disease-related information needs; and carer preparedness to care (secondary). Descriptive statistics were used to assess acceptability outcomes, while patient and carer outcomes were assessed using repeated measures ANOVA. Thirty-two patients (53% male, mean age 60) and 31 carers (42% male) participated. I-CoPE was highly acceptable: 86% of eligible patients enrolled, and of these 88% completed the study. Following I-CoPE patients and carers reported fewer information needs (P < .001), while carers reported fewer unmet supportive care needs (P < .01) and increased preparedness to care (P = .04). Quality of life did not significantly change. A model of supportive care delivered based upon illness transitions is feasible, acceptable, and suggests preliminary efficacy in some areas. Formal randomized studies are now required.

Aboriginal experiences of cancer and care coordination: Lessons from the Cancer Data and Aboriginal Disparities (CanDAD) narratives.

BackgroundAboriginal people with cancer experience worse outcomes than other Australians for a range of complex and interrelated reasons. A younger age at diagnosis, higher likelihood of more advanced cancer or cancer type with poorer prognosis, geographic isolation and cultural and language diversity mean that patient pathways are potentially more complex for Aboriginal people with cancer. In addition, variation in the quality and acceptability of care may influence cancer outcomes.ObjectiveThis study sought to understand how care coordination influences Aboriginal people's experiences of cancer treatment.MethodsInterviews with 29 Aboriginal patients or cancer survivors, 11 carers and 22 service providers were carried out. Interviews were semi‐structured and sought to elicit experiences of cancer and the health‐care system. The manifest content of the cancer narratives was entered onto a cancer pathway mapping tool and underlying themes were identified inductively.ResultsThe practice of cancer care coordination was found to address the needs of Aboriginal patients and their families/carers in 4 main areas: “navigating the health system”; “information and communication”; “things to manage at home”; and “cultural safety”.ConclusionsThe CanDAD findings indicate that, when the need for cancer care coordination is met, it facilitated continuity of care in a range of ways that may potentially improve cancer outcomes. However, the need remains unmet for many. Findings support the importance of dedicated care coordination to enable Aboriginal people to receive adequate and appropriate patient‐centred care, so that the unacceptable disparity in cancer outcomes between Aboriginal and non‐Aboriginal people can be addressed.

3.11-P6Measuring the experience of cancer care coordination among Chinese- and Arabic-speaking people in Sydney, Australia: adaptation and pilot testing of the CCCQ-P questionnaire

3.11-P6Measuring the experience of cancer care coordination among Chinese- and Arabic-speaking people in Sydney, Australia: adaptation and pilot testing of the CCCQ-P questionnaire

Benefits, barriers and opinions on multidisciplinary team meetings: a survey in Swedish cancer care

BackgroundCase review and discussion at multidisciplinary team meetings (MDTMs) have evolved into standard practice in cancer care with the aim to provide evidence-based treatment recommendations. As a basis for work to optimize the MDTMs, we investigated participants’ views on the meeting function, including perceived benefits and barriers.MethodsIn a cross-sectional study design, 244 health professionals from south Sweden rated MDTM meeting structure and function, benefits from these meetings and barriers to reach a treatment recommendation.ResultsThe top-ranked advantages from MDTMs were support for patient management and competence development. Low ratings applied to monitoring patients for clinical trial inclusion and structured work to improve the MDTM. Nurses and cancer care coordinators did less often than physicians report involvement in the case discussions. Major benefits from MDTM were reported to be more accurate treatment recommendations, multidisciplinary evaluation and adherence to clinical guidelines. Major barriers to a joint treatment recommendation were reported to be need for supplementary investigations and insufficient pathology reports.ConclusionsHealth professionals’ report multiple benefits from MDTMs, but also define areas for improvement, e.g. access to complete information and clarified roles for the different health professions. The emerging picture suggests that structures for regular MDTM evaluations and increased focus on patient-related perspectives should be developed and implemented.

Evaluation of coordination of cancer care between designated cancer hospitals and primary care providers: Results from a nationwide survey in Japan.

84 Background: To improve coordination of cancer care between cancer specialist hospitals and primary care providers (PCPs), the Japanese government accredited cancer specialist hospitals, so called “designated cancer care hospitals (DCCHs)” and introduced “Cancer care coordination instruction fee” which PCPs can receive if they share a cancer critical path (Japanese version of Survivorship Care Plans) of each cancer patient with DCCHs. We sought to assess the current status of coordination of cancer care in Japan and communication between DCCHs and PCPs from PCPs’ point of view. Methods: A cross-sectional mail survey was administered to randomly selected clinic-based PCPs (4,000 clinics) from a nation-wide database of medical institutions authorized by Ministry of Health, Labour and Welfare Japan to treat patients with health insurance (87,869 clinics). The survey evaluated how much PCPs provided cancer follow-up care and how well DCCHs coordinated care and communicated with PCPs in cancer survivorship. Results: 1,873 PCPs returned the questionnaire (response rate: 46.8%). 1,223 (65.3%) answered to provide cancer follow-up care in outpatient setting. Most of the PCPs which provided cancer follow-up care evaluated the care coordination and support by DCCHs were satisfactory (946, 77.4%) but the degree of good evaluation varied by region (highest: 91.3%, lowest: 45.8%). In regression analysis, provision of palliative care by PCPs (OR 1.52 95%CI 1.05-2.17) and use of cancer critical path (OR 2.10 95%CI 1.63-2.71) were significantly correlated with better evaluation of communication and care coordination. Conclusions: DCCHs communicated well with PCPs and PCPs were satisfied with the communication and care coordination by DCCHs. Provision of palliative care by PCPs and use of cancer critical path are likely to lead good care coordination in cancer care.

Identifying challenges to breast cancer care coordination at urban community-based primary care clinics.

83 Background: Primary care providers (PCPs) are well positioned to play a significant role in improving cancer care in the U.S. and achieving the Institute of Medicine (IOM) recommendation for patient-centered, coordinated, comprehensive cancer care across the care continuum. This is particularly important in underserved communities where fragmented care contributes to widening disparities in cancer mortality. However, PCPs can face considerable challenges delivering cancer care. This research examines challenges to breast cancer survivorship (BCS) care coordination at federally qualified health centers (FQHCs). Methods: We conducted a chart review at five Chicago FQHCs to assess BCS-related follow-up care provided by PCPs. We reviewed patient electronic medical records for documentation of breast cancer-related health information by the PCP and for documentation from cancer specialists, including consultant notes, pathology reports, and treatment histories. Based on BC ICD -9 codes we identified 109 patients who had a BC diagnosis within five years and a primary care visit at one of the five FQHCS within 2 years. Results: The patient population was primarily comprised of African Americans (81%), with 16% Hispanic, and 4% Asian or non-Hispanic White. Mean age at diagnosis was 55 years with 30% diagnosed &lt; 50 years. Medicaid (59%) was the most common health insurance. More than half of the patients had ≥1 chronic disease. Critical clinical BC information was missing from patient medical records, including BC pathology (65%), mammogram (60%), last clinical breast examination (49%), and cancer specialist notes (45%). Documentation of family history and genetic counseling were missing from 76% and 98% of the records, respectively. Conclusions: Our data indicate that PCPs at FQHCs currently have a limited role in delivering IOM recommended patient-centered, coordinated, comprehensive cancer care across the care continuum. The research results underscore a need for improvement in two key areas: 1) support for PCPs to build capacity in BCS care and 2) enhanced communication and care coordination between cancer specialists and PCPS in order to make PCPs an active part of the BCS care team.

Multidisciplinary work in oncology: Population-based analysis for seven invasive tumours.

The concept of multidisciplinary team meetings (MDTs) in cancer care is endorsed internationally, but its uptake varies considerably. In Belgium, MDT meetings were financially recognised in 2003 to encourage healthcare professionals to join their knowledge and competences to improve the quality and coordination of cancer care. This study aimed to evaluate for seven cancer types diagnosed between 2004 and 2011, the practices of MDT meetings in Belgium by means of population-based administrative databases. Results show a clear increase over time in the proportion of individual patients discussed at MDT meetings. Although this evolution may be partly explained by the legal implementation of several financial initiatives to stimulate MDT meetings, it also suggests an increase in specialists' awareness of the importance of such meetings. Nevertheless, there is still room for improvement, for specific cancer types as well as for certain subgroups such as older patients. From the specialists' point of view, reducing the administrative burden and time these meetings demand may entail a greater participation to MDT meetings. Further research is needed to identify the barriers to discuss more patients at MDT meetings and to elucidate the impact of MDT meetings on the quality of cancer care.

A Review of Web Portal Use by Oncology Patients.

Background:Patient portals and other Internet-based technologies have been increasingly used to improve cancer care coordination. Patient portals may introduce special considerations in oncology populations where longitudinal outpatient care is often more intensive than in most other specialties.Methods:This article, which is based upon bibliographic searches in PubMed, reviews the literature on web portal use by cancer patients. Articles published in English from 2000 to August 2018 were identified using the following MeSH search terms and Boolean algebra commands: web portal AND cancer. Information obtained from bibliographic searches (title and topic of article, information in abstract, and keywords) was used to determine whether to retain each article identified in this way.Results:A total of 263 article citations were identified in the bibliographic searches. Of these, 10 met the eligibility criteria. A variety of study designs were used including focus groups, usability testing, in-person interviews, questionnaire surveys, retrospective cohort, and non-randomized trial. Cancer patients had reached modest levels of portal use. Increased portal use has been associated with younger age, white race, and higher socioeconomic status. Most cancer patients used portals to look up testing results and provide notes, but had difficulty in interpreting the results appropriately.Conclusions:Our study adds to the growing evidence that patient portals play a significant role in promoting self-management in cancer survivors. Additional studies are needed to determine factors influencing portal use, so effective interventions can be developed to enhance portal use.

Optimizing clinical and organizational practice in cancer survivor transitions between specialized oncology and primary care teams: a realist evaluation of multiple case studies

BackgroundCancer is now viewed as a chronic disease, presenting challenges to follow-up and survivorship care. Models to shift from haphazard, suboptimal and fragmented episodes of care to an integrated cancer care continuum must be developed, tested and implemented. Numerous studies demonstrate improved care when follow-up is assured by both oncology and primary care providers rather than either group alone. However, there is little data on the roles assumed by specialized oncology teams and primary care providers and the extent to which they work together. This study aims to develop, pilot test and measure outcomes of an innovative risk-based coordinated cancer care model for patients transitioning from specialized oncology teams to primary care providers.Methods/designThis multiple case study using a sequential mixed-methods design rests on a theory-driven realist evaluation approach to understand how transitions might be improved. The cases are two health regions in Quebec, Canada, defined by their geographic territory. Each case includes a Cancer Centre and three Family Medicine Groups selected based on differences in their determining characteristics. Qualitative data will be collected from document review (scientific journal, grey literature, local documentation), semi-directed interviews with key informants, and observation of care coordination practices. Qualitative data will be supplemented with a survey to measure the outcome of the coordinated model among providers (scope of practice, collaboration, relational coordination, leadership) and patients diagnosed with breast, colorectal or prostate cancer (access to care, patient-centredness, communication, self-care, survivorship profile, quality of life). Results from descriptive and regression analyses will be triangulated with thematic analysis of qualitative data. Qualitative, quantitative, and mixed methods data will be interpreted within and across cases in order to identify context-mechanism associations that explain outcomes.DiscussionThe study will provide empirical data on a risk-based coordinated model of cancer care to guide actions at different levels in the health system. This in-depth multiple case study using a realist approach considers both the need for context-specific intervention research and the imperative to address research gaps regarding coordinated models of cancer care.

Health professionals involved in cancer care coordination: Nature of the role and scope of practice

BackgroundCancer treatment can be complex; and coordination of cancer care across different treatments and health settings is essential to high quality health care. ObjectiveThe aim of this study was to determine the location and scope of practice of health professionals involved in cancer care coordination in Victoria, Australia. MethodsThe study design was cross-sectional. An online survey was disseminated through 14 peak organisations for oncology health professionals to individuals whose work involved coordinating the care of cancer patients. FindingsAnalysis was conducted on a sample of 91 survey respondents. Only 26.4% (n=24) reported a job title of Cancer Care Coordinator. Overall, 67.0% (n=61) reported they were specifically funded to coordinate the care of cancer patients and 30.8% (n=28) devoted all their time to this role.The majority worked in public health services (n=73, 80.2%) and 37.4% (n=34) were located in rural areas. Compared with their metropolitan counterparts, rural coordinators were more likely to be funded by philanthropy (p=0.002); work part-time (p=0.017); and work with patients in the community (p<0.001).In 37.4% (n=34) of cases patients were required to have a particular type of cancer to receive care coordination. Positions funded by philanthropy were more likely to have this requirement (p=0.002). ConclusionHealth professionals undertaking cancer care coordination are diverse and the service offered differs according to location and funding source. There may be inequities in care, with people living in particular areas, attending particular health services or with certain tumour types more likely to receive cancer care coordination.

Emerging Models of Interprofessional Collaboration in Cancer Care.

To present emerging models for oncology health professionals to consider when coordinating cancer care among professionals, beginning as early as initial professional education and training and continuing along the cancer continuum to include cancer treatment and psychosocial support. Journal articles indexed on the National Library of Medicine database and personal communications with oncology colleagues. Interprofessional collaboration is becoming increasingly important in the specialty of oncology. The complexity of new therapies and their associated side-effect profiles benefit from a collaborative, interprofessional approach to the care of the patient with cancer. Additionally, oncology patients can benefit from interprofessional collaboration across the complexities of the care continuum. Oncology nurses are often in roles that can facilitate interprofessional collaboration, optimizing the care of patients with cancer.

1609TiP - Impact of a cancer care coordination program based on health information technologies for patients treated by oral anticancer therapy: The CAPRI randomized trial

Background: The emergence of oral delivery in cancer therapeutics results in an increased need for better coordination between all treatment stakeholders, mainly to ensure adequate treatment delivery to the patient. There is a significant interest in cancer care coordination programs, especially those combining Nurse Navigators (NN) and the use of new technologies. However, the potential impact of these combined strategies is limited by a lack of rigorous evidence. Trial design: A monocentric randomized trial (1,000 patients, 1:1) is designed to assess the impact of a cancer care coordination program namely CAPRI. This program is based on two NN and a web application. NN ensure remote patient monitoring, via phone calls and email. They also provide a link between hospital professionals, patients and primary care professionals (GP, private nurse, pharmacist, etc.) by giving them access to the web application with the patient’s authorization. Patients can enter data related to their health. Alerts are sent to the NN in case of abnormal data. NN evaluate the alert level on the basis of algorithms and determine the necessary action. The study will evaluate CAPRI’s efficacy in comparison with regular care during a 6-month period for adult patients with metastatic cancer. Hypothesis is that with a closer monitoring of the patient, the management of toxicities is more efficient and results in fewer dose adjustments of oral cancer therapeutics and avoids unnecessary hospital visits. The primary research aim is to assess the impact of the CAPRI program on treatment delivery for cancer patients who started oral cancer therapy, as measured by Relative Dose Intensity. The trial involves several secondary outcomes: patient adherence, tumor response, survival, toxicities, patient quality of life and patient experience. An economic evaluation adopting a societal perspective will be conducted, in order to estimate the use of healthcare resources. A parallel process evaluation will be conducted to describe the implementation of the CAPRI program. Of the 1,000 patients to be recruited, 109 patients are currently enrolled since November 2016. Clinical trial identification: 2016-A00254-47 Legal entity responsible for the study: Gustave Roussy Funding: National Research French Agency, Philanthropia Lombard Odier Foundation, Astrazeneca, Novartis Disclosure: All authors have declared no conflicts of interest.

Cancer Care Coordination: a Systematic Review and Meta-Analysis of Over 30Years of Empirical Studies.

According to a landmark study by the Institute of Medicine, patients with cancer often receive poorly coordinated care in multiple settings from many providers. Lack of coordination is associated with poor symptom control, medical errors, and higher costs. The aims of this systematic review and meta-analysis were to (1) synthesize the findings of studies addressing cancer care coordination, (2) describe study outcomes across the cancer continuum, and (3) obtain a quantitative estimate of the effect of interventions in cancer care coordination on service system processes and patient health outcomes. Of 1241 abstracts identified through MEDLINE, EMBASE, CINAHL, and the Cochrane Library, 52 studies met the inclusion criteria. Each study had US or Canadian participants, comparison or control groups, measures, times, samples, and/or interventions. Two researchers independently applied a standardized search strategy, coding scheme, and online coding program to each study. Eleven studies met the additional criteria for the meta-analysis; a random effects estimation model was used for data analysis. Cancer care coordination approaches led to improvements in 81% of outcomes, including screening, measures of patient experience with care, and quality of end-of-life care. Across the continuum of cancer care, patient navigation was the most frequent care coordination intervention, followed by home telehealth; nurse case management was third in frequency. The meta-analysis of a subset of the reviewed studies showed that the odds of appropriate health care utilization in cancer care coordination interventions were almost twice (OR=1.9, 95% CI=1.5-3.5) that of comparison interventions. This review offers promising findings on the impact of cancer care coordination on increasing value and reducing healthcare costs in the USA.

Association between pancreatic cancer patients' perception of their care coordination and patient-reported and survival outcomes.

People with pancreatic cancer have poor survival, and management is challenging. Pancreatic cancer patients' perceptions of their care coordination and its association with their outcomes have not been well-studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival. People with pancreatic cancer who were 1-8 months postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions of care coordination, quality of life, anxiety, and depression using validated instruments. Mean scores for 15 care-coordination items were calculated and then ranked from highest (best experience) to lowest (worst experience). Associations between care-coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumor had been resected. In both groups, the highest-ranked care-coordination items were: knowing who was responsible for coordinating care, health professionals being informed about their history, and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping, knowing the symptoms they should monitor, having sufficient emotional help from staff, and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group. Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancer patients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.

Qualitative Study of Latino Cancer Patient Perspectives on Care Access and Continuity in a Rural, U.S.-Mexico Border Region.

Access to quality cancer care for cancer patients living in the rural U.S.-Mexico border region is complex due to common binational health care-seeking behaviors and regional socio-economic and cultural characteristics. But little is known about the challenges border dwelling residents face when navigating their cancer care systems. In-depth interviews were conducted with 22 cancer patients in Southern California. Thematic analysis was applied to identify patterns of meaning in the data. Emerging themes were: (1) delays in cancer care coordination: (a) poor coordination of cancer care (b) U.S. and cross-border discordance in cancer diagnosis; (2) regional shortage of cancer specialists; and (3) financial hardship. Findings revealed that care needs distinctly involved care coordination in/outside of the patient's community and bi-national care coordination. In addition to local solutions to improve cancer coordination through community-based partnerships, efforts to bridge care in a two-nation context are also imperative.

Challenges and insights in implementing coordinated care between oncology and primary care providers: a Canadian perspective.

We report here on the current state of cancer care coordination in Canada and discuss challenges and insights with respect to the implementation of collaborative models of care. We also make recommendations for future research. This work is based on the findings of the Canadian Team to Improve Community-Based Cancer Care Along the Continuum (canimpact) casebook project. The casebook project identified models of collaborative cancer care by systematically documenting and analyzing Canadian initiatives that aim to improve or enhance care coordination between primary care providers and oncology specialists. The casebook profiles 24 initiatives, most of which focus on breast or colorectal cancer and target survivorship or follow-up care. Current key challenges in cancer care coordination are associated with establishing program support, engaging primary care providers in the provision of care, clearly defining provider roles and responsibilities, and establishing effective project or program planning and evaluation. Researchers studying coordinated models of cancer care should focus on designing knowledge translation strategies with updated and refined governance and on establishing appropriate protocols for both implementation and evaluation.

The role of family physicians in cancer care: perspectives of primary and specialty care providers.

Currently, the specific role of family physicians (fps) in the care of people with cancer is not well defined. Our goal was to explore physician perspectives and contextual factors related to the coordination of cancer care and the role of fps. Using a constructivist grounded theory approach, we conducted telephone interviews with 58 primary and cancer specialist health care providers from across Canada. The participants-21 fps, 15 surgeons, 12 medical oncologists, 6 radiation oncologists, and 4 general practitioners in oncology-were asked to describe both the role that fps currently play and the role that, in their opinion, fps should play in the future care of cancer patients across the cancer continuum. Participants identified 3 key roles: coordinating cancer care, managing comorbidities, and providing psychosocial care to patients and their families. However, fps and specialists discussed many challenges that prevent fps from fully performing those roles: ■ The fps described communication problems resulting from not being kept "in the loop" because they weren't copied on patient reports and also the lack of clearly defined roles for all the various health care providers involved in providing care to cancer patients.■ The specialists expressed concerns about a lack of patient access to fp care, leaving specialists to fill the care gaps. The fps and specialists both recommended additional training and education for fps in survivorship care, cancer screening, genetic testing, and new cancer treatments. Better communication, more collaboration, and further education are needed to enhance the role of fps in the care of cancer patients.

P19.02 Care Coordination: The experience of a Brain Cancer Care Coordinator in Australia

The role of the Brain Cancer Care Coordinator (BCCC) aims to provide expert clinical consultancy to support high level care coordination for patients diagnosed with primary brain cancer. The role has a district-wide focus within the Hunter New England Area (HNE), based at John Hunter Hospital, Newcastle, Australia and is funded by the Mark Hughes Foundation. HNE is a region of 131, 785 square kilometres and includes a metropolitan area, regional communities and a portion of remote communities. HNE consists of a population of 873, 741 which is more than Zurich, Geneva, Basel and Bern’s population’s combined. The diagnosis of a brain tumour can be devastating, debilitating and stressful for not only the patient themselves but also for their entire social support. Within the space of one day, lives can be changed, crucial decisions of treatment need to be made, and exposure to a range of healthcare professionals, tests, reports, and opinions need to be considered. The healthcare system can be incredibly confusing and complex due to the multitude of appointments, range of specialists, debilitating deficits, difficulty accessing services, lack of information, adverse effects from treatment, reduced social support if from a rural area and independence is often taken away such as the ability to drive. Accessing a range of services is difficult and often a lack of information is provided to patients and their families. Caring for a loved one diagnosed with brain cancer is challenging, both emotionally and physically. Witnessing sudden or subtle changes in someone you love is frightening. The varying degrees of change in personality, physical wellbeing, and ultimate loss of lifestyle, can be a burden few can cope with. The BCCC supports the patient and their families from diagnosis through treatment, follow-up, discharge or end of life care. The aim of the BCCC is to provide patient-centred care, advocacy, clinical advice, education, and support, assess needs and make appropriate referrals and bridge the gap between the patient and their specialists to ensure that complex needs of patients and their families are effectively managed. The BCCC coordinates the transitioning of care for rural patients who require care in a metropolitan centre and supports research such as bio banking and clinical trials. The experience of the BCCC since it’s commencement in January 2016 is improved over-all well-being of patients and their family’s through their entire illness trajectory, efficiency of transitions through care, reduced patient distress, and increased compliance with care. There are few BCCC’s in Australia and these positions are often funded by charities such as the Mark Hughes Foundation. The BCCC role should have greater representation within multidisciplinary teams throughout Australia and the world to ensure the highest quality of care is delivered to patients diagnosed with brain cancer.