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Health professionals involved in cancer care coordination: Nature of the role and scope of practice
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Collegian journal homepage: www.elsevier.com/locate/coll
Health professionals involved in cancer care coordination: Nature of the role and scope of practice Kerry Haynes a,∗ , Anna Ugalde a , Rachel Whiffen b , Megan Rogers c , Mary Duffy c , Chris Packer d , Danielle Spence e , Anthony Dowling f , Peter Poon g , Patricia Livingston a a
School of Nursing and Midwifery, Deakin University, Victoria, Australia Cancer Council Victoria, Melbourne, Victoria, Australia c Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia d Hume Regional Integrated Cancer Service, Shepparton, Victoria, Australia e Breast Cancer Network Australia, Melbourne, Victoria, Australia f St Vincent’s Hospital, Melbourne, Victoria and The University of Melbourne, Melbourne, Victoria, Australia g Monash Health, Melbourne, Victoria and Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Victoria, Australia b
a r t i c l e
i n f o
Article history: Received 24 July 2017 Received in revised form 6 September 2017 Accepted 14 October 2017 Available online xxx Keywords: Cancer Patients Patient navigation Patient care management Health services research
a b s t r a c t Background: Cancer treatment can be complex; and coordination of cancer care across different treatments and health settings is essential to high quality health care. Objective: The aim of this study was to determine the location and scope of practice of health professionals involved in cancer care coordination in Victoria, Australia. Methods: The 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. Findings: Analysis 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). Conclusion: Health 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. © 2017 Australian College of Nursing Ltd. Published by Elsevier Ltd.
1. Introduction Cancer treatment can be complex as it involves multiple disciplines and may occur over an extended period. Effective coordination of cancer care across different treatments and health services is essential to high quality health care (Aiello Bowles et al., 2008), and is valued by consumers (Wagner et al., 2010).
∗ Corresponding author at: Deakin University, School of Nursing and Midwifery, Deakin University, 1 Gheringhap St, Geelong, Victoria 3220, Australia. E-mail address: [email protected] (K. Haynes).
One response to improving cancer care integration and coordination is the employment of health professionals to assist patients to navigate the health system. Research has shown that improved coordination of care can improve cancer screening rates, adherence to follow-up care after detection of an abnormality and timeliness of diagnostic resolution, however evidence to support its effectiveness in improving cancer treatment outcomes is inconclusive (Wells et al., 2008; Paskett, Harrop, & Wells, 2011). A randomised controlled trial of nurses employed to coordinate the care of patients with breast or lung cancer failed to find any impact on symptom distress, fatigue, quality of life or health care usage (Skrutkowski et al., 2008). Another randomised con-
https://doi.org/10.1016/j.colegn.2017.10.006 1322-7696/© 2017 Australian College of Nursing Ltd. Published by Elsevier Ltd.
Please cite this article in press as: Haynes, K., et al. Health professionals involved in cancer care coordination: Nature of the role and scope of practice. Collegian (2017), https://doi.org/10.1016/j.colegn.2017.10.006
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Summary of relevance Problem • Health professionals are employed by health services to assist patients navigate the health system, yet there is limited understanding of the role. What is already known • Evidence for the effectiveness of cancer care coordination provided by health professionals is mixed and made more complex by the heterogeneity of models studied. What this paper adds • This paper provides details of the role undertaken by health professionals involved in cancer care coordination in Victoria, including the nature and location of positions, capacity of the services, patient eligibility and barriers experienced in the role. The results point to gaps in care coordination for some cancer patients.
trolled trial with breast, colorectal or lung cancer patients found that care coordination by nurses improved the patient experience and reduced problems in care but had no significant impact on quality of life or delays in receiving care (Wagner et al., 2014). A recent systematic review of care coordination for breast cancer patients, that included studies of both professional and lay cancer care coordinators, found that care coordination increased surveillance mammography rates but there was only minimal evidence for its effectiveness in increasing treatment outcomes (Baik, Gallo, & Wells, 2016). The evidence for the effectiveness of the cancer care coordination role is complex due to the heterogeneity of coordinator models studied. Care coordinators vary in professional background, with the majority either nurses or lay health workers, and the patient populations served also vary, with some services targeted specifically to patients at higher risk or to those with particular tumour types (Paskett et al., 2011). The scope of cancer care coordinator roles can also vary with funding and setting. Understanding the various roles and tasks taken on by those who coordinate cancer care is likely to be central to understanding the benefits of this role on patient outcomes. The objective of this research was to determine the location and scope of practice of health professionals involved in cancer care coordination in Victoria, Australia, with the aim of describing the nature of the role, the tasks that are performed, patient access to the service, including facilitators and barriers to access, and the views of those undertaking the role.
included some aspect of cancer care coordination (it did not have to be the focus of the role). The following information was sent to all potential participants in the email that accompanied the link to the survey: “If you work in Victoria and your role involves coordinating the care of cancer patients I encourage you to click on the following link to find out more about this project. Your job title does not have to be ‘Cancer Care Coordinator’. We are interested in hearing from people who spend some of their time coordinating the care of cancer patients. For example, this could be part of a nursing or clinical research role. ” 2.3. Procedure An online survey was developed in consultation with a project steering committee comprising two oncologists, two cancer care coordinators, and a representative from each of the following organisations: Cancer Council Victoria, Breast Cancer Network Australia and a regional Integrated Cancer Service. A draft survey was reviewed by the members of the project steering committee and two nurses with cancer care coordination experience were asked to pilot it. Feedback obtained during the pilot was used to revise the survey. The survey included multiple choice questions about the participant’s job title, professional background, employment conditions (whether employed full time or part, type of contract, funding source), location of position (organisation type and geographic area), tasks undertaken, multidisciplinary team participation, demand for the cancer care coordination service, and patient eligibility and access. Questions about the barriers and facilitators, the most rewarding and challenging aspects of the role and proportion of time devoted to coordinating the care of cancer patients were open-ended. The survey took approximately 15 minutes to complete. A link to the survey was disseminated through 14 peak organisations for health professionals who worked with cancer patients in Victoria in July 2016. In total, more than 1500 emails with the link were sent. Participants were advised that they may receive the email from multiple sources and that they should only complete the survey once. Organisations were asked to disseminate the survey four weeks prior to the closing date for responses. A reminder was sent a week prior to the closing date. 2.4. Analysis Quantitative data were analysed using SPSS Statistics V23©. Comparison between proportions was undertaken by chi square tests. P-values less than 0.05 were considered to be statistically significant. Free text from open-ended survey questions was coded and quantified.
2. Methods 3. Results 2.1. Design The study design was a cross-sectional, self-report questionnaire, designed specifically to understand the role, functions and models of cancer care coordination. The project was approved by the local Human Research Ethics Committee and all research participants provided informed consent to participate. The survey results were anonymous. 2.2. Participants Study participants were required to be Victorian health professionals who undertook direct patient care, and had a role that
A total of 135 responses were received, of which 91 were considered valid. Cases were excluded if less than half the survey was complete (n = 41), they worked outside Victoria (n = 1) or did not undertake direct patient care (n = 2). 3.1. Nature of the role Only 26.4% of respondents (n = 24) had the title of ‘Cancer Care Coordinator’. Common position titles were Nurse Consultant (n = 19, 20.9%) or Nurse Specialist (n = 10, 10.1%). Ten per cent had research titles (n = 9). Most had nursing backgrounds (n = 83, 91.2%) and more than half worked part-time (n = 49, 53.8%) (see Table 1).
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Table 1 Nature of the role (n = 91). Frequency
Percent
What is your job title? Cancer Care Coordinator Cancer Nurse Consultant/Nurse Consultant Cancer Nurse Specialist/Clinical Nurse Specialist Cancer Nurse Coordinator/Nurse Coordinator Cancer Resource Nurse Breast Care Nurse/Breast Care Nurse Coordinator/Breast Care Nurse-Clinical Nurse Consultant Nurse Practitioner/Cancer Nurse Practitioner Assistant Nurse Unit Manager/Nurse Unit Manager/Nurse manager [Tumour type] Service Coordinator Clinical Trial Coordinator/Clinical Trials Research Nurse/Cancer Research Manager Other
24 19 10 5 3 6 3 7 3 9 2
26.4 20.9 10.1 5.5 3.3 6.6 3.3 7.7 3.3 9.9 2.2
What is your professional background?a Nursing Allied Health Science Medicine Corporate Other
83 2 2 1 1 1
91.2 2.2 2.2 1.1 1.1 1.1
Where is the organisation where you work located? Rural area Metropolitan area
34 57
37.4 62.6
Where is your position located?b Health service Community based Charity/Non-profit organisation Integrated Cancer Service
78 10 3 1
85.7 11.0 3.3 1.1
Where do you undertake your work as a cancer care coordinator?b Tertiary hospital-public Tertiary hospital-private Secondary hospital-public Secondary hospital-private Community health service Any health service in community Community Rural health service
62 7 11 4 3 3 2 2
68.1 7.7 12.1 4.4 3.3 3.3 2.2 2.2
Is your position:a Full-time Part-time
41 49
45.1 53.8
Is your position: Permanent Fixed term Casual
66 24 1
72.5 26.4 1.1
Which patient groups do you work with?b Outpatients Inpatients Community
76 62 37
83.5 68.1 40.6
What percentage of your time is devoted to cancer care coordination? 100% 76–99% 51–75% 26–50% 1–25%
28 28 13 14 8
30.8 30.8 14.3 15.4 8.8
How is your position funded?b Public health service Philanthropy/charity Private health service Clinical trials revenue Integrated Cancer Service Federal government Community Health Victorian Cancer Survivorship Program Don’t know
55 19 7 6 5 3 1 1 2
60.4 21.0 7.7 6.6 5.5 3.3 1.1 1.1 2.2
a b
Total includes one missing value. Multiple responses accepted therefore percentages may not sum to 100%.
Health professionals involved in cancer care coordination worked with patients in outpatient (n = 76, 83.5%), inpatient (n = 62, 68.1%) and community (n = 37, 40.6%) settings, with some working
in multiple settings. The majority of respondents held positions based at health services (n = 78, 85.7%). Most worked in public health services (n = 73, 80.2%), with only 12.1% (n = 11) located in
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private health services. Less than a third (n = 28, 30.8%) devoted all their time to coordinating cancer care, and 24.2% (n = 22) spent half their time or less performing this role (see Table 1). A total of 67.0% of respondents (n = 61) held positions that were funded specifically to coordinate the care of cancer patients, 16.5% (n = 15) were funded to coordinate cancer care as part of their role, and 14.3% (n = 13) had been employed to do other things, but it had become part of their role. More than two thirds of respondents worked as part of a multidisciplinary team (MDT) that coordinated the care of cancer patients (n = 63, 69.2%). A further 15.4% (n = 14) reported they were part of an MDT to some extent; 5.5% (n = 5) were not part of an MDT and 9.9% (n = 9) chose not to answer this question. Of those participating in an MDT at least to some extent, 66.7% (n = 52) believed that the MDT saw their role as very important, 30.8% (n = 24) as somewhat important and 2.6% (n = 2) as not at all important. The majority of respondents were funded by public health services (n = 55, 60.4%). Other key sources of funding were philanthropy (n = 19, 21.0%), private health services (n = 7, 7.7%) and revenue generated through clinical trials (n = 6, 6.6%). Compared with those funded by other sources, individuals funded by philanthropy were more likely to work in rural areas (68.4% compared with 29.2%, p = 0.002); work with patients in the community (73.7% compared with 31.9%, p = 0.001); work with patients who had a specific tumour type (68.4% compared with 29.2%, p = 0.002); and be on fixed-term or casual contracts, rather than permanent contracts (57.8% compared with 19.6%, p = 0.001). 3.2. Tasks that make up the role Most of those involved in cancer care coordination monitored patients’ progress (either always or sometimes) during treatment (n = 85, 93.4%) and after treatment had ceased (n = 84, 92.3%). Tasks that were undertaken by more than 90% of respondents, either always or sometimes, when consulting with patients, included: assessing patients’ clinical and supportive care needs (n = 88, 96.7%), providing patients with information and education about their cancer (n = 87, 95.6%) and referring them to other services (n = 87, 95.6%) (see Table 2). As well as consulting with individual patients, those involved in cancer care coordination also frequently attended meetings (n = 67, 73.6%) and undertook administrative duties (n = 56, 61.5%). 3.3. Location Overall, 37.4% of respondents to the survey (n = 34) were located in rural areas. Rural respondents differed from their metropolitan counterparts in being less likely to be involved in a MDT (84.8% compared with 100.0%, p = 0.009); less likely to work with patients in an outpatients setting (73.5% compared with 89.5%, p = 0.047); more likely to be funded by philanthropy (38.2% compared with 10.5%, p = 0.002); more likely to work part-time (70.6% compared with 44.6%, p = 0.017); more likely to have community-based positions (29.4% compared with 0%, p < 0.001); and more likely to work with patients in the community (76.5% compared with 19.3%, p < 0.001). There was no significant difference between rural and metropolitan respondents in terms of patient eligibility for the service i.e. those in rural areas were no more likely to work with patients with particular tumour types than those in metropolitan areas (50.0% compared with 29.8%, p = 0.054). 3.4. Patient eligibility criteria There was no specific eligibility criteria for patients to receive cancer care coordination in 48.4% (n = 44) of cases; however patients were required to have a particular type of cancer, most
frequently breast or prostate cancer, to be seen by a coordinator in 37.4% (n = 34) of cases. Other patient eligibility criteria included having to be at a particular stage of treatment (3.3%, n = 3), within a particular age range (3.3%, n = 3) or participating in a clinical trial (3.3%, n = 3). 3.5. Service capacity The majority of respondents reported that demand for the cancer care coordination service was greater than its capacity (n = 62, 68.1%). Just under one-fifth believed there was appropriate capacity for the demand placed on the service (n = 18, 19.8%); 3.3% (n = 3) believed there was more capacity in the service than demand; 2.2% (n = 2) were unsure and 6.6% (n = 6) did not answer this question. 3.6. Factors that facilitated cancer care coordination Management support for the cancer care coordinator role was nominated by 25.3% (n = 23) of respondents when asked to name organisational factors that improved cancer care coordination. The support of other health professionals, including working within a committed team, was also important (n = 10, 11.0%), as was administrative support to carry out the role (n = 8, 8.8%). Effective communication and collaboration between health professionals to support the cancer care coordinator role was noted by 15.4% (n = 14) and could take the form of MDTs or suitable IT systems (n = 4, 4.4%). Clear role definition (n = 4, 4.4%) and implementation of appropriate referral pathways (n = 9, 9.9%) were thought to contribute to the effectiveness of the role. Adequate funding for the role was suggested by 11.0% of respondents (n = 10) as a means of improving cancer care coordination. There was concern about fixed term contracts, inadequate time to do coordination tasks and not being replaced while on leave. Respondents were asked to nominate strategies that improved patient access to cancer care coordination. Key suggestions included patients receiving a referral to the service from a clinician (n = 19, 20.9%) and ensuring patients were made aware of the service (n = 17, 18.7%), for example, through the coordinator attending relevant clinics. Related themes included ensuring clinicians were aware of the service (n = 15, 16.5%) and maintaining good communication between team members (n = 14, 15.4%). The nature of the cancer care coordination service was seen as important (n = 12, 13.2%), including having a role that was dedicated to cancer care coordination; ability to work in both hospital and community settings and across cancer treatment modalities; availability throughout the week; and accessibility to patients via phone, email or home visits. 3.7. Barriers experienced in the cancer care coordination role Over half the respondents reported that they had experienced barriers in their role as a cancer care coordinator (n = 50, 54.9%), 30.8% (n = 28) reported they had not experienced barriers and 14.3% (n = 13) did not respond. The most frequently reported barriers were lack of understanding, recognition and support of the role by other health professionals (n = 18, 19.8%). Communication or collaboration difficulties were specifically cited by 11.0% of respondents (n = 10), including limited communication between public and private health services, and between departments within health services. Excessive workloads (n = 16, 17.6%) and limited funding (n = 9, 9.9%) were also mentioned. More than half the respondents believed that patients experienced barriers to accessing care coordination (n = 47, 56%); 26.4% (n = 24) disagreed; and 14.3% (n = 13) were unsure. Barriers identified included constraints on the cancer care coordinator role such as restricted time, staffing or funding (n = 22, 24.2%); patients not
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Table 2 Frequency of tasks related to consultation with individual patients (n = 91). Task
Always
Assess their clinical and supportive care needs Provide them with information and education about their cancer Plan and coordinate their clinical care e.g. ordering tests, specialist appointments, clinic visits Refer them to other services e.g. social work, palliative care Provide counselling Assess their need for financial assistance Formally screen for clinical and supportive care needs using tools e.g. The Distress Thermometer Deliver clinical care e.g. pain management Undertake a clinical risk assessment e.g. likelihood of adverse outcomes Book accommodation for them Book transport for them Monitor their progress during treatment Monitor their progress after treatment has ceased
Sometimes
Never
Not part of my role
n
%
n
%
n
%
n
%
77 67 50 49 41 34 31 27 21 2 3 53 36
84.6 73.6 54.9 53.8 45.1 37.4 34.1 29.7 23.1 2.2 3.3 58.2 39.6
11 20 31 38 40 44 40 36 41 37 54 32 48
12.1 22.0 34.1 41.8 44.0 48.4 44.0 39.6 45.1 40.7 59.3 35.2 52.7
1 1 1 1 1 4 14 8 15 21 14 1 2
1.1 1.1 1.1 1.1 1.1 4.4 15.4 8.8 16.5 23.1 15.4 1.1 2.2
1 2 9 2 8 8 5 19 13 30 19 3 2
1.1 2.2 9.9 2.2 8.8 8.8 5.5 20.9 14.3 33.0 20.9 3.3 2.2
Missing values mean that some totals do not sum to 91.
being referred to the service (n = 8, 8.8%) or made aware of it (n = 6, 6.6%); and limited awareness of the role by other health professionals (n = 7, 7.7%). 3.8. The most rewarding aspects of the role Helping or caring for patients and their families was seen as one of the most rewarding aspects of the cancer care coordinator role (n = 34, 37.4%). This included helping patients with practical issues; to navigate the health system and alleviating their stress. Satisfaction was gained from having contact with patients and their families (n = 25, 27.5%); helping to streamline their care (n = 13, 14.3%) and being a constant for them throughout their treatment (n = 7, 7.7%). 3.9. The most challenging aspects of the role An excessive workload, competing priorities, and time and funding limitations were common themes (n = 39, 42.9%) when asked to identify the most challenging aspects of the role. Lack of recognition of the role and clarity about its scope, including unrealistic expectations being placed on the role were also identified as challenges (n = 8, 8.8%). Some found working with other staff members or within teams challenging (n = 13, 14.3%), due to communication difficulties, limited sharing of information, lack of referrals, limited support from management or colleagues, or differences of opinion. Dealing with a recurrence of the patients’ disease was also difficult, including discussing disease recurrence and coping with a patient’s death (n = 6, 6.6%). The emotional toll of caring for cancer patients was also mentioned, including the possibility of stress and burnout (n = 3, 3.3%). There were also challenges associated with some patient groups (n = 6, 6.6%), particularly those who had competing priorities while having treatment; came from difficult social circumstances; resisted treatment; or did not follow instructions. 4. Discussion 4.1. The cancer care coordination role This study provides detailed information about health professionals who coordinate the care of cancer patients in Victoria and clearly demonstrates the diversity of this group. Only 26% had ‘Cancer Care Coordinator’ as their job title, less than a third held positions that were devoted to the role and some had taken on cancer care coordination while employed in other roles. The diver-
sity of the role was reflected in the job titles and likely to be the result of positions evolving in response to their settings, in terms of patient, health service or funding requirements. The demand for cancer care coordination appeared to be greater than capacity in the majority of cases, and excessive workload and limited funding were frequently cited barriers. In 2014, 30,585 Victorians were diagnosed with cancer and this figure is likely to increase over time due to the ageing of the population (Thursfield & Farrugia, 2015). As well as an increasing incidence of cancer, cancer survivorship has increased, and some of these patients will benefit from ongoing support (Lotfi-Jam, Schofield, & Jefford, 2009). Consequently it will be become increasingly important to optimise cancer care coordinator positions. The funding for positions that coordinated cancer care was derived from multiple sources, such as individual public health services or philanthropy, which may make planning and coordination of services more challenging. The funding source can impact on which patients’ are eligible to access the service, and without a coordinated approach, may result in gaps in care coordination for some patients. This study found that those involved in cancer care coordination who were funded by philanthropy were more likely to only see patients with a particular cancer type, or patients residing in rural Victoria. Only 12% of health professionals involved in cancer care coordination were located in private health services; suggesting patients in private settings may have less access to care coordination. 4.2. Cancer care coordination in rural settings Overall, 37% of respondents were located in rural areas where 31% of cancer cases occurred. People with cancer in rural settings face additional challenges (Zucca, Boyes, Newling, Hall, & Girgis, 2011) and have worse cancer survival rates than their metropolitan counterparts (Thursfield & Farrugia, 2015). Factors that may contribute to poorer outcomes for rural cancer patients include greater socioeconomic disadvantage, a higher prevalence of cancer risk factors, delayed diagnosis, treatment disparities, geographic isolation and inadequate transportation (Coory, Ho, & Jordan, 2013), (Jong, Vale, & Armstrong, 2005), (Jiwa et al., 2007). Care coordination may therefore may be particularly important in rural areas where cancer patients require additional support. This study identified differences in cancer care coordination in rural areas compared with that in metropolitan Victoria. Health professionals coordinating cancer care in rural areas were more likely to work with patients in the community, rather than hospital inpatients or outpatients. They were also more likely to be funded by philanthropy which could impact on the patient groups they
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could work with, as some philanthropic organisations are tumour specific. However we were not able to demonstrate that they were more likely to work with patients with particular tumour types. As found in previous studies, those coordinating cancer care in rural areas were more likely to work part-time (Jones, Leach, Chambers, & Occhipinti, 2010), and were less likely to participate in MDTs (Ahern, Gardner, & Courtney, 2015). Participation in MDTs has benefits for both patients and health professionals (Cancer Australia, 2016) and greater use of technology, such as videoconferencing, to reduce the time required to travel to meetings may improve participation for some rural coordinators (Ahern et al., 2015). 4.3. Factors that support cancer care coordination Support for the cancer care coordinator role from management, as well as communication and collaboration with other health professionals, were seen as essential for it to be effective, particularly in relation to referral of patients to the service. This required other health professionals to have a clear understanding of the coordinator’s role and responsibilities (Freijser, Naccarella, McKenzie, & Krishnasamy, 2015), (Walsh et al., 2010), (Walsh et al., 2011). Systematic approaches to referral of patients to the service, such as clearly articulated and embedded referral pathways, could reduce the workload of those undertaking cancer care coordination and reduce the possibility of patients being overlooked. Administrative support to undertake tasks such as scheduling appointments, and improved communication channels which could include IT systems accessible by health professionals of different disciplines across multiple health services, could also reduce the cancer care coordinators’ workload and increase their availability to undertake specialist patient care. 4.4. Strengths and limitations of the study These data present an in-depth examination of the role of health professionals in coordinating cancer care. The data were obtained through an anonymous survey and could not be checked for accuracy. The questionnaire was designed for the study, and while there was no validation of the items, there was input from a steering committee. Respondents may have received the survey from multiple sources, so the response rate is unknown. A limitation of the survey is that 41 people commenced the survey but completed less than half of it. There was insufficient data to examine if this group differed from those who completed the survey. The survey was targeted to health professionals who undertook some aspect of cancer care coordination as part of their role (in order to gain an understanding of the diversity of cancer care coordination roles). As a result, approximately one-quarter of respondents spent half their time or less performing this role which may ‘dilute’ some of the findings. Other health professionals who coordinate cancer care as a minor part of their role may not have participated in the survey because they did not think it was relevant to them. Therefore the results may not be representative of those involved in cancer care coordination in Australia and internationally. 5. Conclusion The group of health professionals who undertake cancer care coordination in Victoria is diverse, and an improved understanding of the role of those working in rural areas and how they could be supported to improve cancer outcomes for rural patients is required. Due to the limited and fragmented nature of funding for
positions that coordinate cancer care, some cancer patients may not receive support in coordinating their care due to their place of residence, tumour type or health service. Further research is required to examine the cancer care coordinator role in the Australian context, in particular identification of the patient groups who could most benefit from care coordination and strategies to ensure they have access to the service. Acknowledgements The authors would like to acknowledge Cancer Council Victoria for funding the study and the health professionals who contributed to the research. References Ahern, T., Gardner, A., & Courtney, M. (2015). A survey of the breast care nurse role in the provision of information and supportive care to Australian women diagnosed with breast cancer. Nursing Open, 2(2), 62–71. Aiello Bowles, E. J., Tuzzio, L., Wiese, C. J., Kirlin, B., Greene, S. M., Clauser, S. B., et al. (2008). Understanding high-quality cancer care: a summary of expert perspectives. Cancer, 112(4), 934–942. http://dx.doi.org/10.1002/cncr.23250 Baik, S. H., Gallo, L. C., & Wells, K. J. (2016). Patient navigation in breast cancer treatment and survivorship: A systematic review. Journal of Clinical Oncology, 34(30), 3686–3696. Cancer Australia. (2016). Multidisciplinary care.. Retrieved from https:// canceraustralia.gov.au/clinical-best-practice/multidisciplinary-care (Accessed 23.11.16) Coory, M. D., Ho, T., & Jordan, S. J. (2013). Australia is continuing to make progress against cancer, but the regional and remote disadvantage remains. Medical Journal of Australia, 199(9), 605–608. Freijser, L., Naccarella, L., McKenzie, R., & Krishnasamy, M. (2015). Cancer care coordination: Building a platform for the development of care coordinator roles and ongoing evaluation. Australian Journal of Primary Health, 21(2), 157–163. Jiwa, M., Halkett, G., Aoun, S., Arnet, H., Smith, M., Pilkington, M., et al. (2007). Factors influencing the speed of cancer diagnosis in rural Western Australia: A general practice perspective. BMC Family Practice, 8(1), 27. Jones, L., Leach, L., Chambers, S., & Occhipinti, S. (2010). Scope of practice of the breast care nurse: A comparison of health professional perspectives. European Journal of Oncology Nursing, 14(4), 322–327. Jong, K. E., Vale, P. J., & Armstrong, B. K. (2005). Rural inequalities in cancer care and outcome. Medical Journal of Australia, 182(1), 13–14. Lotfi-Jam, K., Schofield, P., & Jefford, M. (2009). What constitutes ideal survivorship care? Cancer Forum, 33(3), 4. Paskett, E. D., Harrop, J., & Wells, K. J. (2011). Patient navigation: an update on the state of the science. CA: A Cancer Journal for Clinicians, 61(4), 237–249. Skrutkowski, M., Saucier, A., Eades, M., Swidzinski, M., Ritchie, J., Marchionni, C., et al. (2008). Impact of a pivot nurse in oncology on patients with lung or breast cancer: symptom distress, fatigue, quality of life, and use of healthcare resources. Oncology Nursing Forum, 35(6) [7]. Thursfield, V., & Farrugia, H. (2015). In Cancer Council Victoria (Ed.), Cancer in Victoria: Statistics & trends 2014. Melbourne: Cancer Council Victoria. Wagner, E. H., Bowles, E. J. A., Greene, S. M., Tuzzio, L., Wiese, C. J., Kirlin, B., et al. (2010). The quality of cancer patient experience: Perspectives of patients, family members, providers and experts. Quality and Safety in Health Care, 19(6), 484–489. Wagner, E. H., Ludman, E. J., Bowles, E. J. A., Penfold, R., Reid, R. J., Rutter, C. M., et al. (2014). Nurse navigators in early cancer care: A randomized, controlled trial. Journal of Clinical Oncology, 32(1), 12–18. Walsh, J., Harrison, J. D., Young, J. M., Butow, P. N., Solomon, M. J., & Masya, L. (2010). What are the current barriers to effective cancer care coordination? A qualitative study. BMC Health Services Research, 10, 132. http://dx.doi.org/10. 1186/1472-6963-10-132 Walsh, J., Young, J. M., Harrison, J. D., Butow, P. N., Solomon, M. J., Masya, L., et al. (2011). What is important in cancer care coordination? A qualitative investigation. European Journal of Cancer Care (England), 20(2), 220–227. http:// dx.doi.org/10.1111/j.1365-2354.2010.01187.x Wells, K. J., Battaglia, T. A., Dudley, D. J., Garcia, R., Greene, A., Calhoun, E., et al. (2008). Patient navigation: state of the art or is it science? Cancer, 113(8), 1999–2010. Zucca, A., Boyes, A., Newling, G., Hall, A., & Girgis, A. (2011). Travelling all over the countryside: Travel-related burden and financial difficulties reported by cancer patients in New South Wales and Victoria. Australian Journal of Rural Health, 19(6), 298–305.
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Collegian journal homepage: www.elsevier.com/locate/coll
Health professionals involved in cancer care coordination: Nature of the role and scope of practice Kerry Haynes a,∗ , Anna Ugalde a , Rachel Whiffen b , Megan Rogers c , Mary Duffy c , Chris Packer d , Danielle Spence e , Anthony Dowling f , Peter Poon g , Patricia Livingston a a
School of Nursing and Midwifery, Deakin University, Victoria, Australia Cancer Council Victoria, Melbourne, Victoria, Australia c Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia d Hume Regional Integrated Cancer Service, Shepparton, Victoria, Australia e Breast Cancer Network Australia, Melbourne, Victoria, Australia f St Vincent’s Hospital, Melbourne, Victoria and The University of Melbourne, Melbourne, Victoria, Australia g Monash Health, Melbourne, Victoria and Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Victoria, Australia b
a r t i c l e
i n f o
Article history: Received 24 July 2017 Received in revised form 6 September 2017 Accepted 14 October 2017 Available online xxx Keywords: Cancer Patients Patient navigation Patient care management Health services research
a b s t r a c t Background: Cancer treatment can be complex; and coordination of cancer care across different treatments and health settings is essential to high quality health care. Objective: The aim of this study was to determine the location and scope of practice of health professionals involved in cancer care coordination in Victoria, Australia. Methods: The 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. Findings: Analysis 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). Conclusion: Health 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. © 2017 Australian College of Nursing Ltd. Published by Elsevier Ltd.
1. Introduction Cancer treatment can be complex as it involves multiple disciplines and may occur over an extended period. Effective coordination of cancer care across different treatments and health services is essential to high quality health care (Aiello Bowles et al., 2008), and is valued by consumers (Wagner et al., 2010).
∗ Corresponding author at: Deakin University, School of Nursing and Midwifery, Deakin University, 1 Gheringhap St, Geelong, Victoria 3220, Australia. E-mail address: [email protected] (K. Haynes).
One response to improving cancer care integration and coordination is the employment of health professionals to assist patients to navigate the health system. Research has shown that improved coordination of care can improve cancer screening rates, adherence to follow-up care after detection of an abnormality and timeliness of diagnostic resolution, however evidence to support its effectiveness in improving cancer treatment outcomes is inconclusive (Wells et al., 2008; Paskett, Harrop, & Wells, 2011). A randomised controlled trial of nurses employed to coordinate the care of patients with breast or lung cancer failed to find any impact on symptom distress, fatigue, quality of life or health care usage (Skrutkowski et al., 2008). Another randomised con-
https://doi.org/10.1016/j.colegn.2017.10.006 1322-7696/© 2017 Australian College of Nursing Ltd. Published by Elsevier Ltd.
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Summary of relevance Problem • Health professionals are employed by health services to assist patients navigate the health system, yet there is limited understanding of the role. What is already known • Evidence for the effectiveness of cancer care coordination provided by health professionals is mixed and made more complex by the heterogeneity of models studied. What this paper adds • This paper provides details of the role undertaken by health professionals involved in cancer care coordination in Victoria, including the nature and location of positions, capacity of the services, patient eligibility and barriers experienced in the role. The results point to gaps in care coordination for some cancer patients.
trolled trial with breast, colorectal or lung cancer patients found that care coordination by nurses improved the patient experience and reduced problems in care but had no significant impact on quality of life or delays in receiving care (Wagner et al., 2014). A recent systematic review of care coordination for breast cancer patients, that included studies of both professional and lay cancer care coordinators, found that care coordination increased surveillance mammography rates but there was only minimal evidence for its effectiveness in increasing treatment outcomes (Baik, Gallo, & Wells, 2016). The evidence for the effectiveness of the cancer care coordination role is complex due to the heterogeneity of coordinator models studied. Care coordinators vary in professional background, with the majority either nurses or lay health workers, and the patient populations served also vary, with some services targeted specifically to patients at higher risk or to those with particular tumour types (Paskett et al., 2011). The scope of cancer care coordinator roles can also vary with funding and setting. Understanding the various roles and tasks taken on by those who coordinate cancer care is likely to be central to understanding the benefits of this role on patient outcomes. The objective of this research was to determine the location and scope of practice of health professionals involved in cancer care coordination in Victoria, Australia, with the aim of describing the nature of the role, the tasks that are performed, patient access to the service, including facilitators and barriers to access, and the views of those undertaking the role.
included some aspect of cancer care coordination (it did not have to be the focus of the role). The following information was sent to all potential participants in the email that accompanied the link to the survey: “If you work in Victoria and your role involves coordinating the care of cancer patients I encourage you to click on the following link to find out more about this project. Your job title does not have to be ‘Cancer Care Coordinator’. We are interested in hearing from people who spend some of their time coordinating the care of cancer patients. For example, this could be part of a nursing or clinical research role. ” 2.3. Procedure An online survey was developed in consultation with a project steering committee comprising two oncologists, two cancer care coordinators, and a representative from each of the following organisations: Cancer Council Victoria, Breast Cancer Network Australia and a regional Integrated Cancer Service. A draft survey was reviewed by the members of the project steering committee and two nurses with cancer care coordination experience were asked to pilot it. Feedback obtained during the pilot was used to revise the survey. The survey included multiple choice questions about the participant’s job title, professional background, employment conditions (whether employed full time or part, type of contract, funding source), location of position (organisation type and geographic area), tasks undertaken, multidisciplinary team participation, demand for the cancer care coordination service, and patient eligibility and access. Questions about the barriers and facilitators, the most rewarding and challenging aspects of the role and proportion of time devoted to coordinating the care of cancer patients were open-ended. The survey took approximately 15 minutes to complete. A link to the survey was disseminated through 14 peak organisations for health professionals who worked with cancer patients in Victoria in July 2016. In total, more than 1500 emails with the link were sent. Participants were advised that they may receive the email from multiple sources and that they should only complete the survey once. Organisations were asked to disseminate the survey four weeks prior to the closing date for responses. A reminder was sent a week prior to the closing date. 2.4. Analysis Quantitative data were analysed using SPSS Statistics V23©. Comparison between proportions was undertaken by chi square tests. P-values less than 0.05 were considered to be statistically significant. Free text from open-ended survey questions was coded and quantified.
2. Methods 3. Results 2.1. Design The study design was a cross-sectional, self-report questionnaire, designed specifically to understand the role, functions and models of cancer care coordination. The project was approved by the local Human Research Ethics Committee and all research participants provided informed consent to participate. The survey results were anonymous. 2.2. Participants Study participants were required to be Victorian health professionals who undertook direct patient care, and had a role that
A total of 135 responses were received, of which 91 were considered valid. Cases were excluded if less than half the survey was complete (n = 41), they worked outside Victoria (n = 1) or did not undertake direct patient care (n = 2). 3.1. Nature of the role Only 26.4% of respondents (n = 24) had the title of ‘Cancer Care Coordinator’. Common position titles were Nurse Consultant (n = 19, 20.9%) or Nurse Specialist (n = 10, 10.1%). Ten per cent had research titles (n = 9). Most had nursing backgrounds (n = 83, 91.2%) and more than half worked part-time (n = 49, 53.8%) (see Table 1).
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Table 1 Nature of the role (n = 91). Frequency
Percent
What is your job title? Cancer Care Coordinator Cancer Nurse Consultant/Nurse Consultant Cancer Nurse Specialist/Clinical Nurse Specialist Cancer Nurse Coordinator/Nurse Coordinator Cancer Resource Nurse Breast Care Nurse/Breast Care Nurse Coordinator/Breast Care Nurse-Clinical Nurse Consultant Nurse Practitioner/Cancer Nurse Practitioner Assistant Nurse Unit Manager/Nurse Unit Manager/Nurse manager [Tumour type] Service Coordinator Clinical Trial Coordinator/Clinical Trials Research Nurse/Cancer Research Manager Other
24 19 10 5 3 6 3 7 3 9 2
26.4 20.9 10.1 5.5 3.3 6.6 3.3 7.7 3.3 9.9 2.2
What is your professional background?a Nursing Allied Health Science Medicine Corporate Other
83 2 2 1 1 1
91.2 2.2 2.2 1.1 1.1 1.1
Where is the organisation where you work located? Rural area Metropolitan area
34 57
37.4 62.6
Where is your position located?b Health service Community based Charity/Non-profit organisation Integrated Cancer Service
78 10 3 1
85.7 11.0 3.3 1.1
Where do you undertake your work as a cancer care coordinator?b Tertiary hospital-public Tertiary hospital-private Secondary hospital-public Secondary hospital-private Community health service Any health service in community Community Rural health service
62 7 11 4 3 3 2 2
68.1 7.7 12.1 4.4 3.3 3.3 2.2 2.2
Is your position:a Full-time Part-time
41 49
45.1 53.8
Is your position: Permanent Fixed term Casual
66 24 1
72.5 26.4 1.1
Which patient groups do you work with?b Outpatients Inpatients Community
76 62 37
83.5 68.1 40.6
What percentage of your time is devoted to cancer care coordination? 100% 76–99% 51–75% 26–50% 1–25%
28 28 13 14 8
30.8 30.8 14.3 15.4 8.8
How is your position funded?b Public health service Philanthropy/charity Private health service Clinical trials revenue Integrated Cancer Service Federal government Community Health Victorian Cancer Survivorship Program Don’t know
55 19 7 6 5 3 1 1 2
60.4 21.0 7.7 6.6 5.5 3.3 1.1 1.1 2.2
a b
Total includes one missing value. Multiple responses accepted therefore percentages may not sum to 100%.
Health professionals involved in cancer care coordination worked with patients in outpatient (n = 76, 83.5%), inpatient (n = 62, 68.1%) and community (n = 37, 40.6%) settings, with some working
in multiple settings. The majority of respondents held positions based at health services (n = 78, 85.7%). Most worked in public health services (n = 73, 80.2%), with only 12.1% (n = 11) located in
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private health services. Less than a third (n = 28, 30.8%) devoted all their time to coordinating cancer care, and 24.2% (n = 22) spent half their time or less performing this role (see Table 1). A total of 67.0% of respondents (n = 61) held positions that were funded specifically to coordinate the care of cancer patients, 16.5% (n = 15) were funded to coordinate cancer care as part of their role, and 14.3% (n = 13) had been employed to do other things, but it had become part of their role. More than two thirds of respondents worked as part of a multidisciplinary team (MDT) that coordinated the care of cancer patients (n = 63, 69.2%). A further 15.4% (n = 14) reported they were part of an MDT to some extent; 5.5% (n = 5) were not part of an MDT and 9.9% (n = 9) chose not to answer this question. Of those participating in an MDT at least to some extent, 66.7% (n = 52) believed that the MDT saw their role as very important, 30.8% (n = 24) as somewhat important and 2.6% (n = 2) as not at all important. The majority of respondents were funded by public health services (n = 55, 60.4%). Other key sources of funding were philanthropy (n = 19, 21.0%), private health services (n = 7, 7.7%) and revenue generated through clinical trials (n = 6, 6.6%). Compared with those funded by other sources, individuals funded by philanthropy were more likely to work in rural areas (68.4% compared with 29.2%, p = 0.002); work with patients in the community (73.7% compared with 31.9%, p = 0.001); work with patients who had a specific tumour type (68.4% compared with 29.2%, p = 0.002); and be on fixed-term or casual contracts, rather than permanent contracts (57.8% compared with 19.6%, p = 0.001). 3.2. Tasks that make up the role Most of those involved in cancer care coordination monitored patients’ progress (either always or sometimes) during treatment (n = 85, 93.4%) and after treatment had ceased (n = 84, 92.3%). Tasks that were undertaken by more than 90% of respondents, either always or sometimes, when consulting with patients, included: assessing patients’ clinical and supportive care needs (n = 88, 96.7%), providing patients with information and education about their cancer (n = 87, 95.6%) and referring them to other services (n = 87, 95.6%) (see Table 2). As well as consulting with individual patients, those involved in cancer care coordination also frequently attended meetings (n = 67, 73.6%) and undertook administrative duties (n = 56, 61.5%). 3.3. Location Overall, 37.4% of respondents to the survey (n = 34) were located in rural areas. Rural respondents differed from their metropolitan counterparts in being less likely to be involved in a MDT (84.8% compared with 100.0%, p = 0.009); less likely to work with patients in an outpatients setting (73.5% compared with 89.5%, p = 0.047); more likely to be funded by philanthropy (38.2% compared with 10.5%, p = 0.002); more likely to work part-time (70.6% compared with 44.6%, p = 0.017); more likely to have community-based positions (29.4% compared with 0%, p < 0.001); and more likely to work with patients in the community (76.5% compared with 19.3%, p < 0.001). There was no significant difference between rural and metropolitan respondents in terms of patient eligibility for the service i.e. those in rural areas were no more likely to work with patients with particular tumour types than those in metropolitan areas (50.0% compared with 29.8%, p = 0.054). 3.4. Patient eligibility criteria There was no specific eligibility criteria for patients to receive cancer care coordination in 48.4% (n = 44) of cases; however patients were required to have a particular type of cancer, most
frequently breast or prostate cancer, to be seen by a coordinator in 37.4% (n = 34) of cases. Other patient eligibility criteria included having to be at a particular stage of treatment (3.3%, n = 3), within a particular age range (3.3%, n = 3) or participating in a clinical trial (3.3%, n = 3). 3.5. Service capacity The majority of respondents reported that demand for the cancer care coordination service was greater than its capacity (n = 62, 68.1%). Just under one-fifth believed there was appropriate capacity for the demand placed on the service (n = 18, 19.8%); 3.3% (n = 3) believed there was more capacity in the service than demand; 2.2% (n = 2) were unsure and 6.6% (n = 6) did not answer this question. 3.6. Factors that facilitated cancer care coordination Management support for the cancer care coordinator role was nominated by 25.3% (n = 23) of respondents when asked to name organisational factors that improved cancer care coordination. The support of other health professionals, including working within a committed team, was also important (n = 10, 11.0%), as was administrative support to carry out the role (n = 8, 8.8%). Effective communication and collaboration between health professionals to support the cancer care coordinator role was noted by 15.4% (n = 14) and could take the form of MDTs or suitable IT systems (n = 4, 4.4%). Clear role definition (n = 4, 4.4%) and implementation of appropriate referral pathways (n = 9, 9.9%) were thought to contribute to the effectiveness of the role. Adequate funding for the role was suggested by 11.0% of respondents (n = 10) as a means of improving cancer care coordination. There was concern about fixed term contracts, inadequate time to do coordination tasks and not being replaced while on leave. Respondents were asked to nominate strategies that improved patient access to cancer care coordination. Key suggestions included patients receiving a referral to the service from a clinician (n = 19, 20.9%) and ensuring patients were made aware of the service (n = 17, 18.7%), for example, through the coordinator attending relevant clinics. Related themes included ensuring clinicians were aware of the service (n = 15, 16.5%) and maintaining good communication between team members (n = 14, 15.4%). The nature of the cancer care coordination service was seen as important (n = 12, 13.2%), including having a role that was dedicated to cancer care coordination; ability to work in both hospital and community settings and across cancer treatment modalities; availability throughout the week; and accessibility to patients via phone, email or home visits. 3.7. Barriers experienced in the cancer care coordination role Over half the respondents reported that they had experienced barriers in their role as a cancer care coordinator (n = 50, 54.9%), 30.8% (n = 28) reported they had not experienced barriers and 14.3% (n = 13) did not respond. The most frequently reported barriers were lack of understanding, recognition and support of the role by other health professionals (n = 18, 19.8%). Communication or collaboration difficulties were specifically cited by 11.0% of respondents (n = 10), including limited communication between public and private health services, and between departments within health services. Excessive workloads (n = 16, 17.6%) and limited funding (n = 9, 9.9%) were also mentioned. More than half the respondents believed that patients experienced barriers to accessing care coordination (n = 47, 56%); 26.4% (n = 24) disagreed; and 14.3% (n = 13) were unsure. Barriers identified included constraints on the cancer care coordinator role such as restricted time, staffing or funding (n = 22, 24.2%); patients not
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Table 2 Frequency of tasks related to consultation with individual patients (n = 91). Task
Always
Assess their clinical and supportive care needs Provide them with information and education about their cancer Plan and coordinate their clinical care e.g. ordering tests, specialist appointments, clinic visits Refer them to other services e.g. social work, palliative care Provide counselling Assess their need for financial assistance Formally screen for clinical and supportive care needs using tools e.g. The Distress Thermometer Deliver clinical care e.g. pain management Undertake a clinical risk assessment e.g. likelihood of adverse outcomes Book accommodation for them Book transport for them Monitor their progress during treatment Monitor their progress after treatment has ceased
Sometimes
Never
Not part of my role
n
%
n
%
n
%
n
%
77 67 50 49 41 34 31 27 21 2 3 53 36
84.6 73.6 54.9 53.8 45.1 37.4 34.1 29.7 23.1 2.2 3.3 58.2 39.6
11 20 31 38 40 44 40 36 41 37 54 32 48
12.1 22.0 34.1 41.8 44.0 48.4 44.0 39.6 45.1 40.7 59.3 35.2 52.7
1 1 1 1 1 4 14 8 15 21 14 1 2
1.1 1.1 1.1 1.1 1.1 4.4 15.4 8.8 16.5 23.1 15.4 1.1 2.2
1 2 9 2 8 8 5 19 13 30 19 3 2
1.1 2.2 9.9 2.2 8.8 8.8 5.5 20.9 14.3 33.0 20.9 3.3 2.2
Missing values mean that some totals do not sum to 91.
being referred to the service (n = 8, 8.8%) or made aware of it (n = 6, 6.6%); and limited awareness of the role by other health professionals (n = 7, 7.7%). 3.8. The most rewarding aspects of the role Helping or caring for patients and their families was seen as one of the most rewarding aspects of the cancer care coordinator role (n = 34, 37.4%). This included helping patients with practical issues; to navigate the health system and alleviating their stress. Satisfaction was gained from having contact with patients and their families (n = 25, 27.5%); helping to streamline their care (n = 13, 14.3%) and being a constant for them throughout their treatment (n = 7, 7.7%). 3.9. The most challenging aspects of the role An excessive workload, competing priorities, and time and funding limitations were common themes (n = 39, 42.9%) when asked to identify the most challenging aspects of the role. Lack of recognition of the role and clarity about its scope, including unrealistic expectations being placed on the role were also identified as challenges (n = 8, 8.8%). Some found working with other staff members or within teams challenging (n = 13, 14.3%), due to communication difficulties, limited sharing of information, lack of referrals, limited support from management or colleagues, or differences of opinion. Dealing with a recurrence of the patients’ disease was also difficult, including discussing disease recurrence and coping with a patient’s death (n = 6, 6.6%). The emotional toll of caring for cancer patients was also mentioned, including the possibility of stress and burnout (n = 3, 3.3%). There were also challenges associated with some patient groups (n = 6, 6.6%), particularly those who had competing priorities while having treatment; came from difficult social circumstances; resisted treatment; or did not follow instructions. 4. Discussion 4.1. The cancer care coordination role This study provides detailed information about health professionals who coordinate the care of cancer patients in Victoria and clearly demonstrates the diversity of this group. Only 26% had ‘Cancer Care Coordinator’ as their job title, less than a third held positions that were devoted to the role and some had taken on cancer care coordination while employed in other roles. The diver-
sity of the role was reflected in the job titles and likely to be the result of positions evolving in response to their settings, in terms of patient, health service or funding requirements. The demand for cancer care coordination appeared to be greater than capacity in the majority of cases, and excessive workload and limited funding were frequently cited barriers. In 2014, 30,585 Victorians were diagnosed with cancer and this figure is likely to increase over time due to the ageing of the population (Thursfield & Farrugia, 2015). As well as an increasing incidence of cancer, cancer survivorship has increased, and some of these patients will benefit from ongoing support (Lotfi-Jam, Schofield, & Jefford, 2009). Consequently it will be become increasingly important to optimise cancer care coordinator positions. The funding for positions that coordinated cancer care was derived from multiple sources, such as individual public health services or philanthropy, which may make planning and coordination of services more challenging. The funding source can impact on which patients’ are eligible to access the service, and without a coordinated approach, may result in gaps in care coordination for some patients. This study found that those involved in cancer care coordination who were funded by philanthropy were more likely to only see patients with a particular cancer type, or patients residing in rural Victoria. Only 12% of health professionals involved in cancer care coordination were located in private health services; suggesting patients in private settings may have less access to care coordination. 4.2. Cancer care coordination in rural settings Overall, 37% of respondents were located in rural areas where 31% of cancer cases occurred. People with cancer in rural settings face additional challenges (Zucca, Boyes, Newling, Hall, & Girgis, 2011) and have worse cancer survival rates than their metropolitan counterparts (Thursfield & Farrugia, 2015). Factors that may contribute to poorer outcomes for rural cancer patients include greater socioeconomic disadvantage, a higher prevalence of cancer risk factors, delayed diagnosis, treatment disparities, geographic isolation and inadequate transportation (Coory, Ho, & Jordan, 2013), (Jong, Vale, & Armstrong, 2005), (Jiwa et al., 2007). Care coordination may therefore may be particularly important in rural areas where cancer patients require additional support. This study identified differences in cancer care coordination in rural areas compared with that in metropolitan Victoria. Health professionals coordinating cancer care in rural areas were more likely to work with patients in the community, rather than hospital inpatients or outpatients. They were also more likely to be funded by philanthropy which could impact on the patient groups they
Please cite this article in press as: Haynes, K., et al. Health professionals involved in cancer care coordination: Nature of the role and scope of practice. Collegian (2017), https://doi.org/10.1016/j.colegn.2017.10.006
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could work with, as some philanthropic organisations are tumour specific. However we were not able to demonstrate that they were more likely to work with patients with particular tumour types. As found in previous studies, those coordinating cancer care in rural areas were more likely to work part-time (Jones, Leach, Chambers, & Occhipinti, 2010), and were less likely to participate in MDTs (Ahern, Gardner, & Courtney, 2015). Participation in MDTs has benefits for both patients and health professionals (Cancer Australia, 2016) and greater use of technology, such as videoconferencing, to reduce the time required to travel to meetings may improve participation for some rural coordinators (Ahern et al., 2015). 4.3. Factors that support cancer care coordination Support for the cancer care coordinator role from management, as well as communication and collaboration with other health professionals, were seen as essential for it to be effective, particularly in relation to referral of patients to the service. This required other health professionals to have a clear understanding of the coordinator’s role and responsibilities (Freijser, Naccarella, McKenzie, & Krishnasamy, 2015), (Walsh et al., 2010), (Walsh et al., 2011). Systematic approaches to referral of patients to the service, such as clearly articulated and embedded referral pathways, could reduce the workload of those undertaking cancer care coordination and reduce the possibility of patients being overlooked. Administrative support to undertake tasks such as scheduling appointments, and improved communication channels which could include IT systems accessible by health professionals of different disciplines across multiple health services, could also reduce the cancer care coordinators’ workload and increase their availability to undertake specialist patient care. 4.4. Strengths and limitations of the study These data present an in-depth examination of the role of health professionals in coordinating cancer care. The data were obtained through an anonymous survey and could not be checked for accuracy. The questionnaire was designed for the study, and while there was no validation of the items, there was input from a steering committee. Respondents may have received the survey from multiple sources, so the response rate is unknown. A limitation of the survey is that 41 people commenced the survey but completed less than half of it. There was insufficient data to examine if this group differed from those who completed the survey. The survey was targeted to health professionals who undertook some aspect of cancer care coordination as part of their role (in order to gain an understanding of the diversity of cancer care coordination roles). As a result, approximately one-quarter of respondents spent half their time or less performing this role which may ‘dilute’ some of the findings. Other health professionals who coordinate cancer care as a minor part of their role may not have participated in the survey because they did not think it was relevant to them. Therefore the results may not be representative of those involved in cancer care coordination in Australia and internationally. 5. Conclusion The group of health professionals who undertake cancer care coordination in Victoria is diverse, and an improved understanding of the role of those working in rural areas and how they could be supported to improve cancer outcomes for rural patients is required. Due to the limited and fragmented nature of funding for
positions that coordinate cancer care, some cancer patients may not receive support in coordinating their care due to their place of residence, tumour type or health service. Further research is required to examine the cancer care coordinator role in the Australian context, in particular identification of the patient groups who could most benefit from care coordination and strategies to ensure they have access to the service. Acknowledgements The authors would like to acknowledge Cancer Council Victoria for funding the study and the health professionals who contributed to the research. References Ahern, T., Gardner, A., & Courtney, M. (2015). A survey of the breast care nurse role in the provision of information and supportive care to Australian women diagnosed with breast cancer. Nursing Open, 2(2), 62–71. Aiello Bowles, E. J., Tuzzio, L., Wiese, C. J., Kirlin, B., Greene, S. M., Clauser, S. B., et al. (2008). Understanding high-quality cancer care: a summary of expert perspectives. Cancer, 112(4), 934–942. http://dx.doi.org/10.1002/cncr.23250 Baik, S. H., Gallo, L. C., & Wells, K. J. (2016). Patient navigation in breast cancer treatment and survivorship: A systematic review. Journal of Clinical Oncology, 34(30), 3686–3696. Cancer Australia. (2016). Multidisciplinary care.. Retrieved from https:// canceraustralia.gov.au/clinical-best-practice/multidisciplinary-care (Accessed 23.11.16) Coory, M. D., Ho, T., & Jordan, S. J. (2013). Australia is continuing to make progress against cancer, but the regional and remote disadvantage remains. Medical Journal of Australia, 199(9), 605–608. Freijser, L., Naccarella, L., McKenzie, R., & Krishnasamy, M. (2015). Cancer care coordination: Building a platform for the development of care coordinator roles and ongoing evaluation. Australian Journal of Primary Health, 21(2), 157–163. Jiwa, M., Halkett, G., Aoun, S., Arnet, H., Smith, M., Pilkington, M., et al. (2007). Factors influencing the speed of cancer diagnosis in rural Western Australia: A general practice perspective. BMC Family Practice, 8(1), 27. Jones, L., Leach, L., Chambers, S., & Occhipinti, S. (2010). Scope of practice of the breast care nurse: A comparison of health professional perspectives. European Journal of Oncology Nursing, 14(4), 322–327. Jong, K. E., Vale, P. J., & Armstrong, B. K. (2005). Rural inequalities in cancer care and outcome. Medical Journal of Australia, 182(1), 13–14. Lotfi-Jam, K., Schofield, P., & Jefford, M. (2009). What constitutes ideal survivorship care? Cancer Forum, 33(3), 4. Paskett, E. D., Harrop, J., & Wells, K. J. (2011). Patient navigation: an update on the state of the science. CA: A Cancer Journal for Clinicians, 61(4), 237–249. Skrutkowski, M., Saucier, A., Eades, M., Swidzinski, M., Ritchie, J., Marchionni, C., et al. (2008). Impact of a pivot nurse in oncology on patients with lung or breast cancer: symptom distress, fatigue, quality of life, and use of healthcare resources. Oncology Nursing Forum, 35(6) [7]. Thursfield, V., & Farrugia, H. (2015). In Cancer Council Victoria (Ed.), Cancer in Victoria: Statistics & trends 2014. Melbourne: Cancer Council Victoria. Wagner, E. H., Bowles, E. J. A., Greene, S. M., Tuzzio, L., Wiese, C. J., Kirlin, B., et al. (2010). The quality of cancer patient experience: Perspectives of patients, family members, providers and experts. Quality and Safety in Health Care, 19(6), 484–489. Wagner, E. H., Ludman, E. J., Bowles, E. J. A., Penfold, R., Reid, R. J., Rutter, C. M., et al. (2014). Nurse navigators in early cancer care: A randomized, controlled trial. Journal of Clinical Oncology, 32(1), 12–18. Walsh, J., Harrison, J. D., Young, J. M., Butow, P. N., Solomon, M. J., & Masya, L. (2010). What are the current barriers to effective cancer care coordination? A qualitative study. BMC Health Services Research, 10, 132. http://dx.doi.org/10. 1186/1472-6963-10-132 Walsh, J., Young, J. M., Harrison, J. D., Butow, P. N., Solomon, M. J., Masya, L., et al. (2011). What is important in cancer care coordination? A qualitative investigation. European Journal of Cancer Care (England), 20(2), 220–227. http:// dx.doi.org/10.1111/j.1365-2354.2010.01187.x Wells, K. J., Battaglia, T. A., Dudley, D. J., Garcia, R., Greene, A., Calhoun, E., et al. (2008). Patient navigation: state of the art or is it science? Cancer, 113(8), 1999–2010. Zucca, A., Boyes, A., Newling, G., Hall, A., & Girgis, A. (2011). Travelling all over the countryside: Travel-related burden and financial difficulties reported by cancer patients in New South Wales and Victoria. Australian Journal of Rural Health, 19(6), 298–305.
Please cite this article in press as: Haynes, K., et al. Health professionals involved in cancer care coordination: Nature of the role and scope of practice. Collegian (2017), https://doi.org/10.1016/j.colegn.2017.10.006