Support and Care for Patients with Prolonged and Incurable Cancer

Project Description

New treatments in cancer care can mean more people are now living for years with an incurable cancer diagnosis. Despite this growing population of patients, we do not know enough about how to support those with prolonged, incurable, chronic, or metastatic/advanced cancer. Living with cancer as an incurable disease can present unique issues related to finances, work, symptom management, and quality of life for patients, their families and their communities. However, there are currently no specific “care pathways” or services tailored to this patient population.

This project aims to better understand this group of patients and their unique care needs and to examine current gaps in health care services to inform a new model of care that addresses the supportive care needs of this patient population.

Project Objectives

• Identify physical and psychosocial symptoms, needs, service barriers, gaps in care, and priorities for this patient population and how they can best be managed.
• Determine how care pathways for patients with prolonged incurable cancer are currently organized and how they can be optimized.
• Determine what the roles are for different healthcare providers, including primary care (e.g., general practitioner), in the care of and care coordination for patients with prolonged incurable cancer.

Intended Outcome

The overarching aim of this project is to develop a new model of care to address the supportive care needs of people living with prolonged, incurable cancer. The intent is to co-develop this model of care via ongoing involvement from patients, their families and communities.

How can you get involved?

• Register to get project updates and attend virtual townhalls (Follow project or sign up)
• Join the project team as a Patient Family Advisor (see Volunteer and Paid Roles)
• Become a community liaison leader to help us co-design focus groups (see Volunteer and Paid Roles)
• Register for focus groups in your community to share your perspective
• Fill out surveys to help us understand the needs of patients and families

Follow this project page to stay up to date!