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Patient Advisor, Advanced Cancer Quality of Life Assessment, Palliative Project

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Open to Fraser – Vancouver Coastal, Patient partners from the Fraser Health region

Last updated

Finding a balance between quality of life and caring for the medical needs of advanced cancer patients can often be difficult for patients, family and healthcare providers that care for them.  A research team is currently conducting a trial of a promising medical treatment that could assist with difficult symptoms and increase the quality of life for those with advanced cancer, and their families.  Patient advisors would help inform their project through the lens of family caregivers and patients impacted.

Open to: Patient partners from the Fraser Health region

Lead Organization or Department

BC SUPPORT Unit - Fraser Health

Aim

  • To have patient advisors provide input into the design of the quality of life assessment research component;
  • To include perspectives of those who have acted as principal caregivers for cancer patients and have experienced bereavement as a family member of someone who has died from cancer.

Level of Engagement

This opportunity is at the level of involve on the spectrum of engagement (www.iap2.org). The promise to you is that the health care partner will work with you to ensure that your ideas and concerns are reflected in recommendations and provide feedback on how your input affected the decision.

Eligibility

This invitation is being extended to volunteers in the Fraser Valley region who:
  • Have been touched by a person with advanced cancer;
  • are comfortable telling their story and working within a team environment; and
  • are open to meeting in person and then via teleconference and/or email

Logistics

  • Number: 2 patient partners
  • Date/Time:  To be determined once patient advisors are confirmed
  • Commitment:  1 week – 6 months
  • Location:  Via telephone and in-person, Surrey area

Reimbursement

Preapproved expenses related to travel to in person meetings will be reimbursed according to the Fraser Health Travel policy (including mileage, parking, tolls and/or public transit).

Background

Objective:  To design a qualitative study that assesses patient and principal family care giver quality of life and the experience of those advanced cancer patients within palliative care through the use of a clinical drug trial. Opportunity:  A new medication that has been used in intensive care units and by anaesthetists has shown potential for treatment of difficult to control symptoms for cancer patients nearing the end of life in the palliative care setting. This study would show the feasibility of comparing this new medication with usual treatment and sedation. Rationale:  It is thought that a quality of life research component will be an essential part of a clinical drug trial looking at treatment of difficult to control pain, with or without confusion, in cancer patients nearing the end of life. When a loved one is in distress, this has a huge impact not only on the patient, but also on the family caregivers. This opportunity has come about as part of an independent multi-site Canadian drug trial comparing a promising new medication to treat pain and delirium compared to usual treatments which are not always effective. Sponsor:  Fraser Health, on behalf of the Canadian Cancer Trial Group based in Kingston Ontario. The setting for the multisite drug trial is palliative complex care units in 7 different communities in Canada, including Victoria, Vancouver, Burnaby, Surrey, Abbotsford, Edmonton, and Toronto. Pharmaceutical role:  The study medication will be provided by the drug manufacturer, but the drug company is arms-length and is not involved in any way in the design of the trial. Special Considerations:  As Patient Advisors, there is a risk of emotional distress from resurrected memories when discussing treatment of intractable pain or delirium during this journey. Counselling, through the palliative care program social worker and/or spiritual care practitioner, would be available for any Patient Advisor.

Engagement Leader Contact Information

Jami Brown
Engagement Leader, Patient and Public Engagement | Fraser Valley
604.510.0449
jbrown@bcpsqc.ca

From Our Community

Derek Koch

Spiritual Health Practitioner and Patient- and Family-Centred Care Lead — Kelowna General Hospital

Derek Koch

The bottom line is because we’re caring for patients. People who know best are those who are receiving the care so it makes logical sense that we would consult with them about their experiences. By connecting with PVN we have been able to educate our teams about the value of patient partners and how important their perspective is in our services.