Skip to main content

Because your voice matters.

Advisor, Understanding Exercise, Leg Pain and High Cholesterol Research Project

Posted • Last updated

Closed

Open to Provincial Region, Patient partners across the province

Last updated

Are you interested in using exercise to help lower cholesterol levels? Help us find out why having high cholesterol can cause leg pain that prevents people from exercising. Together we can help people reduce leg pain and get back to their exercise routines!

Open to: Patient partners across the province

Lead Organization or Department

Tendon Injury Prevention and Rehabilitation Laboratory, Department of Physical Therapy, University of British Columbia

Aim

This research project looks to find out more about what causes tendon problems and leg pain in people with inherited high cholesterol. We are studying the degree to which high cholesterol can become harmful to tendon cells, resulting in tendons that are less tough (i.e., softer, more easily injured). Patient partners are invited to join an advisory team to help develop our research proposal including helping to develop the research questions and study design. We would also discuss with them how they can be involved in future engagement opportunities with the project once it is funded.

Level of Engagement

This opportunity is at the level of involve on the spectrum of engagement. The promise to you is that the health care partner will involve patients in planning and design phases to ensure ideas or concerns are considered and reflected in alternatives and recommendations.

Eligibility

  • Are interested in joining an advisory committee and helping us to understand how high cholesterol causes Achilles pain (leg and walking pain) to help people with a family history of high cholesterol reduce pain and regain the ability to exercise.
  • Have been told by a doctor that they (or a family member) have inherited heart disease with high blood cholesterol, and are taking a cholesterol-lowering medication like a statin.
  • Have tried exercising to help control their cholesterol (an asset)
  • Comfortable in meeting one-on-one with researchers, be willing to learn about the study, be comfortable asking questions as needed to overcome any technical jargon/unfamiliar research concepts, have confidence in sharing ideas and questions, be willing to engage in brainstorming about research priorities and questions.
Patients should have previously attended a PVN orientation and completed the Volunteer Agreement.

Logistics

Vacancies: 3-4 Date and Time: Meetings will be held starting in the first week of March 2019, scheduled as required during business hours based on the availability of all team members including patient partners. A total of three hours in meetings are expected, with up to two hours of preparation expected. This will be negotiated with the patient partners. Location: the method of interaction will be preferably in-person somewhere in Vancouver (either UBC campus or at Vancouver General Hospital) or by teleconference for people living outside of Vancouver. Commitment: this engagement will be for developing a grant proposal, which is due on March 6. Once the project is funded, future engagements will be discussed with the patient partners, that might extend over the life of the project for up to 4 years.

Reimbursement

Reimbursement for local, out-of-pocket expenses will be provided to patient partners - including parking, mileage and child care as needed.

Background

Some people are born without the ability to clear cholesterol from their blood stream. This condition is known as familial hypercholesterolemia (FH), and in particular blood levels of low density lipoprotein (LDL), sometimes called bad cholesterol, are often very high. FH can cause heart disease, heart attacks or strokes. FH affects around 1 in every 250 people, but less than 10% are diagnosed. A warning sign that someone may have FH is when they develop Achilles tendon (lower leg) pain and thickening. Tendons are usually tough connective tissues, made of collagen. Many people have a long history of Achilles tendon pain and do not tolerate tendon loading (walking, jogging) very well, only to find out years later that they have FH. It is not fully known why the Achilles tendons of people with high cholesterol become painful and thickened and lose their load tolerance. In this research, we want to find out more about what causes Achilles tendon problems in people with FH. We want to learn how FH affects the function of tendons. We think that LDL can become harmful to tendon cells, reducing the ability to make collagen and resulting in tendons that are less tough (i.e. softer). If our hypothesis is true, then we could start to develop therapies to help rebuild the collagen and regain the tendon's ability to tolerate exercise. This would make it easier to engage in healthy exercise, which is really important in lowering cholesterol levels. This project is in the proposal development stage and has not yet been funded. It is part of an ongoing research program in this area at UBC.

Engagement Leader Contact Information

Larry Mróz
Patient Engagement Coordinator, BC SUPPORT Unit, Vancouver Centre
lmroz@bcsupportunit.ca
236.521.2065

From Our Community

Shana Ooms

Executive Director of Primary Care Strategy, Policy and Quality — BC Ministry of Health

Shana Ooms

Where those of us in the room may have debated policy or wording, patient voices made sure patients were top of mind. And as a result, significant improvements were made to simplify something that was otherwise complex. Patient voices at the table bring us back to reality in terms of what we are trying to achieve.