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 a prolonged, incurable cancer diagnosis. Living with cancer as an incurable disease can affect many parts of life, including finances, work, managing symptoms, and overall quality of life for patients, their families and their communities.

In ‘Phase 1’ of the project (10/2024-03/2026), we reviewed existing literature to understand how care for people living with prolonged, incurable cancer is organized and how it can be improved. We also engaged directly with patients and caregivers to hear about their most pressing needs and how the Cancer Care Program could serve them better.

What we learned is that there is significant variability in the journeys of people with prolonged, incurable cancer, and many of them ‘cycle in and out’ of different phases:

1) Actively treated (i.e., actively connected and followed by cancer care teams).

2) Between phases of treatments (i.e., loosely connected and intermittently followed by cancer care teams).

3) Primarily managed in community settings, or on oral therapies or watch-and-wait approaches (i.e., not as connected and/or followed by cancer care team).

We also heard that the biggest gap and need in services were two types of information:

1. Medical information about their diagnosis, treatment, end of treatment, aftercare, knowing what to expect, what to watch for in terms of drug side effects and late effects.
2. Information about available resources and services like the Sunshine Room, exercise programs, support groups, financial help, and support for travel and lodging.

We are now starting Phase 2, which will take about two years.

Phase 2 Goal

The model of care we are developing will be focused on patient navigation and making information easier to access and understand.

It will seek to expand the ‘circle of care’ and make cancer care-specific information accessible to healthcare providers who are not part of the Cancer Care Program, such as family doctors and community pharmacists. Expanding the circle of care means making sure patients and caregivers get the right information at the right time, from the right person, and often enough.

By involving more types of providers, there are more opportunities to share information to improve access and help patients and caregivers better understand their condition, treatment, and available support.

How can you get involved?

• Register to get project updates (Follow project or sign up)
• Join the project team by becoming a Patient Family Advisor (see Volunteer and Paid Roles)

Follow this project page to stay up to date!

If you have questions, please contact:

Julia Kaal, PhD

Phone: 902-483-4261

Email: julia.kaal@nshealth.ca