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Patient support materials and guidance

Patient support materials and guidance

What changed?

  • During the COVID-19 pandemic, cancer organisations have rapidly and proactively increased support for cancer patients, providing timely information about cancer care and treatment during the pandemic, and advice about infection control.
  • Cancer Australia’s Information about COVID-19 for people affected by cancer web pages provide information and advice about COVID-19 for people affected by cancer, including dedicated messaging and resources to support Aboriginal and Torres Strait Islander people with cancer and adolescents and young adults with cancer, and links to a range of Australian and international resources and organisations providing information and support during the pandemic.
  • Breast Cancer Network Australia’s My Journey online tool provides timely and tailored online information to people affected by breast cancer, including information about reducing risk of exposure to COVID-19, managing fear and worry during the pandemic, and options for financial support during this time.1  
  • Cancer Council Australia convened a national forum of cancer support organisations to provide  opportunities for collaboration in developing patient resources in response to identified needs. This aimed to provide consistent information across tumour streams and created a unified voice of the cancer community support sector.1

Impact of change

  • The provision of responsive information and guidance for people undergoing cancer treatment, cancer survivors and carers has been critical in meeting information and support needs during the pandemic.

How can high-value changes be embedded or enhanced?

The following strategies were identified in Australian and international literature and by leading Australian cancer experts and consumers. This list is provided to prompt considerations and future strategies to support high-value cancer care in the Recovery phases of the COVID-19 pandemic.

These strategies are listed at the system-, service-, practitioner-, and patient-levels and are intended to be used by a range of cancer control stakeholders across Australia to support high-value cancer care and improve outcomes for people with cancer.

System-level strategies

  • Encouraging communication and collaboration amongst the cancer community to share learnings from the pandemic and identify and address the emerging and ongoing needs of cancer patients in order to develop consistent consumer information. It is important for information to be shared formally and in a timely manner via trusted sources.1
  • Increasing targeted communication to meet the information needs of Aboriginal and Torres Strait Islander peoples, people living in rural and remote Australia and culturally and linguistically diverse populations.
  • Evaluating the practical value of guidance materials developed.2
  • Understanding the longer‐term impact of the pandemic on psycho‐oncology needs of cancer patients and their families.2

Service-level strategies

  • Establishing agreed processes to support access to quality information from trusted sources for all patients.1
  • Increasing use of electronic portals integrated with the patient’s health record to assess patient reported outcomes, including toxicity and quality of life measures, to support the systematic management of patients remotely, such as Patient-Reported Outcomes for Personalized Treatment and Care (PROMPT-Care).3

Practitioner-level strategies

  • Disseminating and promoting consistent, coordinated and coherent evidence-based patient information sources can assist in promoting physical and psychological well‐being of cancer patients and their families.4
  • Increasing use of information communication technologies, such as applications delivered via mobile devices for health promotion, has been highly recommended for healthcare professionals caring for patients in situations where patients are confined to their homes.4

Patient-level strategies

  • Conducting patient experience surveys to support rapid identification of emerging issues or needs of cancer patients during periods of acute stress on the health system.
  • Promoting the importance of the patient voice to communicate strong, evidence-based public health messaging via organisations focused on advocacy, cancer navigation, and support.5

 

References

[1] National cancer expert or consumer participant, Cancer Australia COVID-19 Recovery and cancer roundtable. Meeting minutes unpublished. 30 June 2020.

[2] Archer S, Holch P, Armes J et al. “No turning back” Psycho‐oncology in the time of COVID‐19: Insights from a survey of UK professionals. Psychooncology. 2020 Jul 20 : 10.1002/pon.5486

[3] Girgis A, Durcinoska I, Arnold A, Delaney G. Interpreting and Acting on the PRO Scores From the Patient-reported Outcomes for Personalized Treatment and Care (PROMPT-Care) eHealth System. Med Care. 2019 May;57 Suppl 5 Suppl 1:S85-S91.

[4] Cheung AT, Li WHC, Ho LLK et al. Health support to pediatric cancer survivors and their families during the COVID‐19 pandemic. Paediatr Blood Cancer. 2020. doi: https://doi.org/10.1002/pbc.28441

[5] Farley JH, Hines J, Lee NK et al. Promoting health equity in the era of COVID-19. Gynecol Oncol. 2020. doi:https://doi.org/10.1016/j.ygyno.2020.05.023