ABSTRACT
Introduction
Despite evidence of improved outcomes, people with pancreatic cancer have highly variable access to effective pain relief and palliative care. We aimed to develop evidence‐based, community‐informed standardised pathways to timely pain management and early palliative care for people with pancreatic cancer.
Main Recommendations
Using a multi‐method, comprehensive, community engagement and evidence‐informed approach, we developed pathways to standardise referral to pain management and early palliative care for people with pancreatic cancer. Community engagement included representation from multidisciplinary clinicians, community groups and people with lived experience from across regions and all Australian states. We developed two pathways: (i) a pathway for pain management for people with resectable pancreatic cancer and (ii) an integrated pathway for pain management and palliative care for people with unresectable pancreatic cancer (https://www.pancare.org.au/pancreatic‐cancer‐roadmap‐projects/pancreatic‐cancer‐pathways). Clinical guidance providing practical steps and links to evidence accompany the pathways. Key elements of the pathways included:
screening for pain at each encounter, comprehensive holistic assessment and management;
early consideration of interventional pain management in the event of refractory pain;
introduction of palliative care at time of diagnosis of metastatic or unresectable pancreatic cancer with links to suggested language to address potential community hesitancy; and
recommendation to discuss referrals for palliative care and interventional pain management at cancer multidisciplinary meetings.
Changes in Management as a Result of the Guidelines
The pathways developed have set forth best practice standards grounded in evidence and expert consensus. The extensive clinical and community engagement ensures the relevance and ownership of these pathways. Implementation of the pathways will reduce existing variation in access and enhance the quality of care for people with pancreatic cancer. Furthermore, the pathways offer an opportunity to benchmark practice within and between services.
Keywords: cancer, digestive system neoplasms, pain management
1. Introduction
Pancreatic cancer is the eighth most commonly diagnosed cancer in Australia and is responsible for 7.5% of cancer deaths [1]. People with pancreatic cancer, their families and communities experience marked suffering related to high symptom burden, psychological distress and, frequently, a rapidly fatal diagnosis [2, 3]. Of the physical symptoms, pain is a common and particularly feared complication, affecting up to 80% of people with advanced illness and, if unrelieved, may result in poor quality of life, reduced oral intake, poor sleep and reduced tolerance to cancer treatments [4]. Conversely, patients with less intense pain are reported to have both a better quality of life and longer survival [5, 6]. Effective pain management is a critical element of pancreatic cancer care.
Management of pain in pancreatic cancer involves a range of holistically delivered therapies, including analgesics; cancer‐directed therapies; non‐pharmacological therapies, such as psychological interventions; and, for selected patients, interventional analgesia (endoscopic ultrasound, ultrasound or computed tomography‐guided coeliac plexus neurolysis; splanchnic plexus neurolysis; or, on occasion, spinal analgesia) [4, 5, 7]. Interventional pain management approaches in pancreatic cancer have been demonstrated to result in lower reports of pain and, in some studies, lower opioid usage [4, 5, 8, 9, 10]. Yet access to pain management, including interventional approaches, remains variable and many people with cancer continue to suffer unrelieved pain [11, 12].
Palliative care involves pain and symptom management, alongside psychosocial, spiritual, cultural and practical support for patients and families. Evidence from multiple meta‐analyses has demonstrated benefits of early palliative care for people with advanced cancer [13], leading to a strong global consensus supporting its integration into routine cancer practice [14, 15]. Despite proven benefits, early palliative care access is not routinely available, with barriers to referral including uncertainty of correct timing, patients' hesitation around palliative care and existing service models [16, 17]. New service models are required to facilitate equitable and timely access to early palliative care in pancreatic cancer care.
The Australian Cancer Plan highlights the need for integrated care models to maximise access to high‐quality, timely and evidence‐based supportive and palliative care [18]. The development of standardised referral pathways to timely specialist pain management and early palliative care would facilitate improved patient experience and consistency of practice in cancer care. Using a community engagement, consensus building approach to pathway development would enable inclusion of a broad range of experience, deep knowledge and would increase the legitimacy of the outcomes [19]. The aim of this manuscript is to describe the development of standardised referral pathways in the context of pancreatic cancer care using a comprehensive, community engagement and evidence‐informed approach.
1.1. Project Context
The National Pancreatic Cancer Roadmap developed by Cancer Australia established a series of key priority areas that are central to improving the lives and outcomes of Australians affected by pancreatic cancer [20]. These priorities included improved access to specialist expertise in pain management and to early palliative care for people with pancreatic cancer.
To address these priorities, this project aimed to develop:
a standardised pathway for timely referral to specialist pain management, which included a pain needs assessment tool and accompanying clinical guidance, health professional education modules and patient information for presentation in a web‐based platform; and
a standardised pathway for early referral to palliative care, which included accompanying clinical guidance.
The pathways were also accompanied by implementation and digital technology recommendations to guide translation into clinical care. This manuscript is focused on presentation of the pathways themselves and, secondarily, the steps and processes of a method of sectoral engagement undertaken to develop the pathways to specialist pain management and early palliative care. The other components of this project, including consultation outcomes with Aboriginal and Torres Strait Islander peoples will be published elsewhere.
2. Methods
To achieve the project aims, a multidisciplinary investigator team was assembled, bringing together expertise in palliative and pain clinical care, First Nations cancer care, health services research, implementation science and digital health technologies. The project adopted a multi‐method approach to develop the pathways, which involved wide sector engagement, theoretical framing and undertaking key activities.
The sectoral engagement involved:
establishing an Expert Advisory Group to provide oversight of all aspects of project;
creating Working Groups to develop themed elements of the pathways;
conducting stakeholder consultation and feedback; and
facilitating Aboriginal and Torres Strait Islander peoples' engagement.
The theoretical framing involved:
the Consolidated Framework for Implementation Research [21];
a Cultural Safety Framework [22]; and
deliberative dialogue [23].
The processes informing sectoral engagement comprised:
rapid literature reviews;
clinical guidance development; and
a program logic.
Throughout, the pathways, supporting guidance and workpieces were developed using consensus methods in alignment with the Accurate Consensus Reporting Document (ACCORD) (Section S1) [24].
2.1. Sectoral Engagement
2.1.1. Expert Advisory Group
An Expert Advisory Group (EAG) was established to provide feedback and oversight of the project and included representation from national clinical leaders across different fields, states and regions, as well as community members. Criteria for EAG membership included national leadership as evidenced by contribution to publications and guideline development or community advocacy in the field of pancreatic cancer. The EAG provided guidance, reviewed drafts and final pathways and clinical guidance and facilitated communication and engagement with the broader community including the clinical community.
2.1.2. Working Groups
Four Working Groups were established, each with a particular focus: (i) Pain Pathway, (ii) Palliative Care Pathway, (iii) Pain Assessment Tool and (iv) Patient Information/Health Professional Education Modules.
The Working Groups comprised experts spanning all aspects of the field of pancreatic cancer care, education and lived experience as well as all states and regions of Australia. Inclusion in Working Groups was based on key specialty/skill set as evidenced by involvement in guideline development, publication or advocacy. In addition, purposive representation from a mix of disciplinary backgrounds, regions and states was sought. Names of potential Working Group members were collated by scanning literature, websites and investigator knowledge of the field and supplemented by EAG member suggestions. Email invitations to join the Working Group were sent ensuring representation across relevant skillsets and geography.
Working Groups were chaired by members of the investigator team, who are leading published experts in the fields of cancer pain management (ML), palliative care (JP) and multidisciplinary training (MK and GC).
Meeting regularly, and interspersed with stakeholder feedback, the Working Groups reviewed the evidence, considered the feedback and progressively refined the outcomes to establish the respective workpieces or outputs (Figure 1).
FIGURE 1.
Pancreatic Pathway iterative development method.
A set of guiding principles, informed by the National Pancreatic Cancer Roadmap [20], underpinned all Working Group discussions (Box 1).
BOX 1. Principles adopted from the National Pancreatic Cancer Roadmap [20].
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2.1.3. Stakeholder Consultation and Feedback
Extensive consultation was undertaken across the community with people affected by or involved in the care of those with pancreatic cancer. Stakeholder Groups were established to provide broad community feedback and involved people who were clinicians, educators and community members, including across diverse culturally and linguistically backgrounds, from across Australian states and regions.
The Stakeholder Groups reviewed the collated Working Group summaries, considered gaps and supplemented these with lived experiences and insights, providing iterative feedback and thereby facilitating the progressive shaping of the final pathways.
2.1.4. Aboriginal and Torres Strait Islander Engagement
In addition to the community Stakeholder Groups described above, specific input was sought from a diverse Aboriginal and Torres Strait Islander group. This engagement involved a series of online Yarning groups, overseen and guided by a senior First Nations cancer researcher and investigator (GG). Yarning is a culturally safe and relational method of gathering knowledge through open, respectful conversations that centre Aboriginal ways of knowing, being and doing. Perspectives and experiences were shared with suggestions for change or tailoring for the care of Aboriginal and Torres Strait Islander peoples (Figure 1). Participants in each of the groups were offered reimbursement for their time.
2.1.5. Sectoral Engagement Activities and Outcomes
2.1.5.1. Participant Demographics
In total, across the project, there were 84 individuals and 37 meetings were held between March 2023 and April 2024. The regular meetings of each group (EAG, Working Group and Stakeholder Groups) enabled the iterative development of each of the outputs from the work as expert review, community perspectives and direct patient and caregiver experience were incorporated. Detailed group membership is presented in Table 1.
TABLE 1.
Membership of Working Groups and Stakeholder Groups.
| Expertise | State and regionality | |
|---|---|---|
| Expert Advisory Group (N = 9) |
|
|
| Working Groups | ||
| Pain Pathway (N = 11) |
|
|
| Pain Assessment Tool (N = 6) |
|
|
| Palliative Care Pathway (N = 11) |
|
|
| Health Professional Education and Patient information (N = 9) |
|
|
| Stakeholder Groups | ||
| Clinician Groups (N = 14) |
|
|
| Culturally and Linguistically Diverse Group (N = 9) |
|
|
| Consumer/Community Group (N = 7) |
|
|
| Aboriginal and Torres Strait Islander Group (N = 10) |
|
|
2.1.5.2. Priority Populations
The perspectives of Aboriginal and Torres Strait Islander community members and those from culturally and linguistically diverse communities prompted further adaptation and shaping to respond to the needs of these communities. This broad consultation provided the perspectives, local knowledge, pragmatic experience and community wisdom, ensuring these were central to all outputs developed. In addition to providing these aspects of knowledge, the consultation process fostered engagement and ownership of the outputs that were endorsed by each of the groups, meaning that the community and the experts in the field saw them as credible.
2.2. Theoretical Underpinnings
2.2.1. Consolidated Framework for Implementation Research
The Consolidated Framework for Implementation Research (CFIR) [25] guided and facilitated the systematic articulation of all implementation steps. The CFIR is a widely used structured approach highlighting a range of domains to be considered when implementing evidence‐based practices, including the innovation, the setting, the people and the processes adopted. Specifically, the CFIR 2.0 was used to frame the results of literature reviews through highlighting and grouping barriers and facilitators across these domains, to guide the questions posed to Working Groups, Stakeholder Groups and to analyse community feedback and, in turn, to underpin the development of the proposed implementation strategies (Table 2).
TABLE 2.
Levels of contribution of each group/method according to Consolidated Framework for Implementation Research (CFIR) domains.
| CFIR domains | Expert Advisory Group | Assembling background information | Working Group expert review | Stakeholder consultation |
|---|---|---|---|---|
| Innovation | + | +++ | +++ | ++ |
| Inner setting | ++ | ++ | +++ | |
| Outer setting | +++ | ++ | ++ | |
| Individuals | +++ | +++ | ||
| Implementation process | +++ | +++ | +++ |
Note: +Degree of groups/methods contribution to each CFIR domain, ranging from + (= some) through to +++ (= extensive).
2.2.2. Cultural Safety Framework
A Cultural Safety Framework was implemented based on the principles of reflexivity, dialogue, reducing power differences, decolonisation and regardful care (respecting cultural knowledge and a strengths‐based approach) [22]. This Framework informed the lens with which information was gathered and the project activities undertaken, including the Stakeholder engagement and consultation [26].
2.2.3. Deliberative Dialogue
Deliberative Dialogue was facilitated for each of the Working Group and Stakeholder Consultation meetings by allowing ‘research evidence [to be considered] together with the views, experiences and tacit knowledge of those [who will be] involved in or affected by future decisions about high‐priority issues’ [23] (Box 2).
BOX 2. Steps included in the Deliberative Dialogue.
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2.3. Processes Informing Sectoral Engagement
2.3.1. Literature Reviews
We undertook rapid literature reviews of the published peer reviewed biomedical literature and environmental scans of the grey and/or online literature across a range of themes relevant to the project outcomes (Box 3). The certainty of level of evidence in the rapid reviews was underpinned by involvement of two reviewers, priority given to systematic reviews in the field, and limiting the outcomes to critical benefits and harms [27].
BOX 3. Specific literature review and environmental scans topics.
|
Seven rapid literature reviews (Date S1) and three environmental scans to gather background information to underpin the pathway development were undertaken. These yielded up‐to‐date information on current evidence, recommended practice, the nature of present services, as well as insights into capability and challenges in existing systems of care.
2.3.2. Program Logic
A Program Logic was developed to facilitate the organisation of the outcomes of the literature reviews and environmental scans alongside the emerging outcomes of consultation. The logic model provided a visual representation of the relationships between the Pancreatic Pathway project inputs, activities, outputs and the intended effects. It enabled the project team to consider those elements for which the project had direct control, and those beyond the sphere of influence. It also assisted the articulation of assumptions that may have been incorporated into work being undertaken.
2.3.3. Activities and Outcomes
The project team engaged in a workshop to document assumptions about the potential outcomes across the project entirety (i.e., pain management and palliative care pathways), as well as patient, health system and implementation outcomes. Following review and refinement, an agreed logic model enabled the project team to keep a shared and consistent understanding of a complex set of project components. Ongoing work is underway to disseminate these outcomes.
2.3.4. Clinical Guidance Development
Based on the Standards for Clinical Practice Guidance developed by the National Clinical Effectiveness Committee, clinical guidance is defined as a set of ‘systematically developed statements or processes to assist clinician and patient decisions about appropriate health care for specific clinical circumstances’ [28]. Specific attention was given to:
ensuring multidisciplinary and lived experience input in the development of guidance;
considering geography and coverage;
determining and recommending best practice according to the evidence; and
understanding what may be required for implementation.
Ethics approval was granted by the St Vincent's Hospital Research and Ethics Committee (134/23).
2.4. Analysis
At the Expert Advisory, Working Group and Stakeholder Groups meetings, the results of the rapid literature reviews and environmental scans were presented and organised according to the domains of the CFIR. Discussion of these results and additional experiences and perspectives were invited. The meetings were audio recorded, transcribed and subject to deductive analysis, with emerging points of discussion once more mapped against the CFIR domains. In turn, these outcomes were iteratively drafted to develop practice responses and were represented to the groups, thereby ensuring that the ongoing iterative pathway development was based upon an accurate representation of previous discussions. At each meeting, the most current iteration was presented, with group members invited to confirm, edit or adjust content, thereby providing member‐checking of the work throughout.
3. Recommendations
3.1. Pathways to Timely Pain Management and Early Palliative Care
Two pathways were developed. Stakeholders determined early on that for people with unresectable disease, pain management and palliative care should be integrated, whereas patients with potentially curable disease required access to pain management not dependent upon palliative care. Therefore, the first was a pathway for pain management for people with pancreatic cancer who had resectable disease (Figure 2) [29] and the second was an integrated pathway for pain management and palliative care for people with pancreatic cancer who had unresectable disease (Figure 3) [29]. The clinical guidance to support clinicians using the pathways is presented in Appendices S1 and S2 [29]. The pathways and clinical guidance outline evidence‐based care, representing the gold standard. Importantly, the pathways were developed to represent best care, rather than what is currently feasible under existing circumstances.
FIGURE 2.
Pathway to rapid access pain management for people with pancreatic cancer. PRN, as needed; PROM, patient‐reported outcome measure. Source: Figure reproduced with permission from the Pancare Foundation (https://www.pancare.org.au/pancreatic‐cancer‐roadmap‐projects/pancreatic‐cancer‐pathways).
FIGURE 3.
Integrated pain and early palliative care pathway for people with pancreatic cancer. ACP, Advance Care Planning. Source: Figure reproduced with permission from the Pancare Foundation (https://www.pancare.org.au/pancreatic‐cancer‐roadmap‐projects/pancreatic‐cancer‐pathways).
3.2. Pathway Presentation
Stakeholders agreed that pathways should be delivered online. The purpose of the pathways was to show the suggested course at key decision points in the cancer illness course and to have immediately available clinical guidance, with links to additional information and evidence at key decision points in the cancer illness course, including further resources to support clinicians to consider how they may deliver the best care in their setting. In addition, the pathways would have links to multidisciplinary clinician education modules and patient information around interventional pain management for people with pancreatic cancer. These final pathways, with hyperlinks to relevant clinical guidance, are available online [29] (Figures 2 and 3).
4. Discussion
This project developed agreed pathways to timely pain management, including interventional pain management and early palliative care, with accompanying guidance for clinicians to support enacting these pathways. It was undertaken using a multi‐method approach of extensive clinical and community consultation ensuring the outputs were grounded in clinical and community experience. The pathways align with international guidelines around access to palliative care ‘beginning early in the course of the disease, alongside active treatment of their cancer,’ for people with solid tumours [14]. Similarly, the pathways to pain management are consistent with European guidelines, including that interventional pain management approaches should be considered in the setting of refractory pain [30]. However, the pathways presented here also highlight that if effective, it is possible to repeat the interventional nerve block in selected cases of pancreatic cancer pain.
The importance of these and similar clinical pathways lie in the multiple opportunities they hold to inform and influence care. A clinical pathway provides an agreed consistent approach to care, thereby reducing variation and potential for people to receive lesser care, as well as the opportunity to share data and benchmark outcomes across services and populations [31].
However, to achieve such standardisation in care delivery, the current gaps between what is existing practice and best care as presented by these pathways need to be bridged. Pain management specialists and in particular interventional pain management specialists as well as outpatient services configured to deliver early palliative care may not be widely available. Lack of access is often the case for people in regional and remote parts of the country. Yet such services do exist in many of the larger centres that undertake diagnosis and initial management of pancreatic cancer. A key component of translation of these pathways into care will necessarily centre upon building networked referral relationships so that patients can access such existing, centrally located services. This approach to delivery of care reflects the Australian Cancer Plan key initiative, which seeks to establish an integrated national network connecting cancer services across the country [32]. By this mechanism linked networks of care can exist between local services, multidisciplinary health professionals and comprehensive cancer centres, where specialist pain management and early palliative care services are available. The use of telehealth to assess and deliver pain management and palliative care, as well as provide secondary consultation to local services has transformed possibilities of access for regional and remote dwelling patients [33].
This complex task of implementation of pathways into practice requires a systematic approach to considering and establishing tailored strategies that support pathway translation into care. The developmental requirements have been addressed through the consultation processes, which have ensured acceptance by the field, authority of the acknowledged experts in the field alongside being informed by literature. The resources developed in this project support clinicians and systems at multiple levels to locate and adopt the outlined approaches. The next challenges to broad translation into practice require pragmatic and practical strategies that give clinicians how‐to guidance for implementation in their local contexts. These challenges form the next work for the group as the goal of broad translation is sought.
The strengths of these pathways and clinical guidance lie in the incorporation of up‐to‐date literature alongside a structured and rigorous approach engaging with and including the extensive experience of the clinical field and of the broader community. The broad representation of those participating in consultation spanned all states and regions of Australia including regional and remote parts of the country. Further community representation included people with experience of pancreatic cancer, community organisations and different cultural groups including First Nations peoples. The endorsement of the final pathways and clinical guidance by this broad group of people means that the outputs are likely to be credible, relevant across Australia and carry the authority of those leaders and key persons in the field.
5. Conclusion
These pancreatic cancer pathways for timely access to specialist pain management and early palliative care, as well as the clinical guidance to support clinicians to successfully navigate care, have been developed in response to a community and clinically identified need. The approach to engagement with multidisciplinary groups enabled a comprehensive approach to establishing pathways to timely pain management and early palliative care accompanied by evidence‐based clinical guidance. The work represents an outcome that is evidence‐based and embeds community and clinical experience, meaning that it is grounded in the real world. The outcomes of this work are highly relevant to clinical practice and demonstrate how endorsement and ownership can be achieved, leading to high quality care for people with pancreatic cancer and their families. This approach is available for others seeking to develop clinical pathways with community support.
Author Contributions
Conceptualisation: J.P., G.B.C., M.R.L., N.M.R., M.K., K.B., G.G. Methodology: J.P., G.B.C., M.R.L., N.M.R., M.K., K.B., G.G., K.B., I.Y. Analysis and progress review: J.P., G.B.C., M.R.L., N.M.R., M.K., K.B., G.G., K.B., I.Y., K.A., J.L. Writing: J.P., G.B.C., M.R.L., N.M.R., M.K., K.B., G.G., K.B., I.Y., K.A., J.L., V.M., D.K. Final manuscript approval: J.P., G.B.C., M.R.L., N.M.R., M.K., K.B., G.G., K.B., I.Y., K.A., J.L., V.M., D.K.
Funding
The authors received financial support (J.P., M.L., M.K., G.B.C., K.B., N.M.R.) or salary support (K.B., I.Y.) from Cancer Australia through a competitive tender to undertake the consultation and pathway development. No other relevant disclosures or conflicts of interest. The Pancare Foundation, which hosts the pathways, is an ACNC Registered Charity focused on improving outcomes for people affected by upper gastrointestinal cancers, including pancreatic cancer. Pancare was contracted by Cancer Australia to host the Pancreatic Pathways as well as associated health professional education modules and patient information.
Disclosure
Not commissioned; externally peer reviewed.
Conflicts of Interest
This work was funded by Cancer Australia—the members of the team received funding support to undertake this work.
Supporting information
Appendix S1: mja270244‐sup‐0001‐supinfo.pdf.
Appendix S2: mja270244‐sup‐0002‐supinfo.pdf.
Data S1: mja270244‐sup‐0003‐supinfo.pdf.
Acknowledgements
This work was commissioned and funded by Cancer Australia. As part of the Australian Pancreatic Cancer Roadmap, Cancer Australia sought work to develop evidence‐based pathways to pain management and palliative care. Following submission of a proposed methodology, this investigative team were selected to undertake the work. We acknowledge members of the community with lived experience, community organisations and clinicians for their contributions to the development of these pathways. Open access publishing facilitated by The University of Melbourne, as part of the Wiley ‐ The University of Melbourne agreement via the Council of Australasian University Librarians
Data Availability Statement
The de‐identified data we analysed are not publicly available, but requests to the corresponding author for the data will be considered on a case‐by‐case basis.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Appendix S1: mja270244‐sup‐0001‐supinfo.pdf.
Appendix S2: mja270244‐sup‐0002‐supinfo.pdf.
Data S1: mja270244‐sup‐0003‐supinfo.pdf.
Data Availability Statement
The de‐identified data we analysed are not publicly available, but requests to the corresponding author for the data will be considered on a case‐by‐case basis.