Supportive care

Evidence summary and stakeholder input

The following is a summary of the findings from the evidence gathering activities and stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page.

Last updated: 31 March 2022

Evidence summary

Throughout the patient journey, patients with pancreatic cancer will require supportive care for their physical, psychological, social, information and spiritual needs. 

Access to timely and evidence-based supportive care is critical, and regular and comprehensive assessment of patient and carers’ needs is required so that tailored supportive care interventions are implemented to improve care experiences. 

Supportive care interventions such as care coordination, counselling, exercise programs, and nutritional support have shown improvements in levels of disease-related symptoms, overall physical function and mental health in people living with pancreatic cancer.¹𝄒²

However, around 96% of Australians with pancreatic cancer have unmet needs, including unmet physical (54%) and/or psychological needs (52%), information (32%), care (21%) and/or sexuality (16%) needs.³𝄒⁴ In addition, over 70% of people reported one or more moderate-to-high-level needs, and needs were highest in the physical/daily living and psychological domains.³ Carers also describe feelings of lacking knowledge and competence to support their family member post pancreatic cancer surgery.⁵ 

Assessing a patient’s performance status is an indicator that a person may require supportive care or is not fit for definitive anti-cancer therapy. At least one third of patients on the Upper Gastrointestinal Cancer Registry (UGICR) had no documented measure of performance status recorded.

There is limited national information on the type of supportive care provided for people with pancreatic cancer. However, prioritising assessment and support for carers from point of diagnosis, embedding home-based exercise programs, providing equity of access to interventional procedures for pain management, routine screening for depression and anxiety using validated tools triggering a comprehensive assessment and referral as required, and improving access to nutritional support, could assist to improve supportive care for people affected by pancreatic cancer. 

While there is limited evidence of the effectiveness of designated cancer care coordinators, data from a large Australian cohort study indicates that people living with pancreatic cancer want to know who is coordinating their care and want to receive care from health professionals who provide medical and psychosocial support.¹

Stakeholder input

The following is a summary of the findings from the stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page. 

The fear, anxiety and distress associated with a diagnosis of pancreatic cancer along with the sense of hopelessness experienced by patients, their families and their carers, and the impact of symptoms and side effects were highlighted by stakeholders.

Stakeholders raised the importance of assessing supportive care needs for patients and carers from the point of diagnosis and throughout the care continuum with referral to appropriate health professionals and organisations based on their needs.

Regular assessment of a patient’s unmet needs using a validated supportive care needs assessment tool for Aboriginal and Torres Strait Islander people together with raising awareness of culturally appropriate tools to assess supportive care needs were highlighted.

Aboriginal and Torres Strait Islander stakeholders raised the lack of awareness of supportive care services and the importance of initiating culturally safe supportive care across the continuum of care from the point of diagnosis together with the importance of carers having an equal focus in relation to supportive care needs.

Stakeholders supported strengthened access to allied health support, improving the availability and access to specialist and allied health services during treatment including dietetics, and strengthening the role of the GP in symptom management.

Information and communication

Stakeholders identified that access to support and information is critical and should be proactively and comprehensively provided to patients, carers and families.

The development and provision to patients and families of clear and transparent information on all aspects of diagnosis and care, including treatment options and side effects was highlighted, together with assessment of patient and carer information needs throughout the pancreatic cancer journey, and increasing the availability and access to support networks and forums to assist in addressing information needs.

The opportunity to map the availability of digital resources for patients and carers was raised together with support for strengthening the skills of health professionals in provision of open, sensitive and hopeful communication.

The gap in information availability to CALD communities, the resultant lack of knowledge about pancreatic cancer, and the subsequent effect on communication and engagement with consumers, their families and carers to support full participation in complex decision-making and selection of care pathways was raised. Providing information and education to CALD communities and individuals can support understanding and awareness of pancreatic cancer and provide important community knowledge. This information needs to be provided with a high degree of sensitivity and any health literacy communications need to be developed with the involvement of CALD communities and relevant health professionals.

Resources developed in multilingual formats were identified as important to build the level of knowledge and understanding of pancreatic cancer, and the availability of community infrastructure such as in-language media that could be used to deliver information about pancreatic cancer in a format and a language that would be preferred by CALD consumers and their families was highlighted. However, when developing information and education resources, consideration should be given to developing resources in the languages of long-term migrant communities who are currently overrepresented in the 65+ age cohort.

Challenges faced by CALD Australians when engaging with the health system include language and communication. Stakeholders raised the importance of developing communication skills to interact with patients with limited English proficiency and the need for language support guidance for health professionals including the importance of using plain or simple English, avoiding complex medical terminology, and engaging with interpreters to ensure understanding of the message.

The development or referral to resources to support cultural competence of health professionals, provision of guidance for health professionals in how to work with interpreters, and development of a resource for interpreters explaining key concepts and terminology related to pancreatic cancer were highlighted.

Appropriate information resources and supportive care for Aboriginal and Torres Strait Islander patients, family members and carers were identified as a notable gap together with issues of poor communication in relation to diagnosis, prognosis, treatment and supportive care options, the language and style of interpersonal communications or written materials, and the wide variety in standards of information and communication. Novel and culturally safe ways to describe diagnosis and treatment options were raised by Aboriginal and Torres Strait Islander stakeholders as well as system supports to address communication barriers including, the availability of highly skilled Aboriginal liaison officers and social workers, supportive care services provided through ACCHOs, and

health care systems and health professionals that provide culturally-responsive and person-centred care.

Increased use of communication technologies and telemedicine to facilitate planning and treatment closer to home together with improved supportive services that make it less onerous for patients who have to travel away from home were also supported by Aboriginal and Torres Strait Islander stakeholders.

Care coordination

Stakeholders highlighted the challenge for patients, families and carers of navigating through the process of diagnosis, treatment and care and the role and importance of care coordinators/ coordination/ patient navigation for all patients from the point of diagnosis. The critical importance of care coordination for those with late-stage disease and those in regional and remote areas was specifically highlighted.

Care coordination across stages of the pancreatic cancer OCP and across service providers was identified as key to improving outcomes for Aboriginal and Torres Strait Islander people with pancreatic cancer. Poor coordination of information about supportive care services was raised, and greater collaboration and coordination of care between cancer care services and ACCHOs or other Aboriginal and Torres Strait Islander community services was raised as helping patients navigate their care journey and supporting patients’ needs.

Key priority areas, strategies and activities 

Each key priority area has supporting strategies and associated activities for implementation in the short, medium or long term that have been identified to achieve the priority.