Familial Hypercholesterolaemia patient-determined themes for community-engaged research

the Family Heart Foundation is proud to share published research from a Patient Centered Outcomes Research Institute (PCORI)-funded project implemented by the University of Rochester, with the Family Heart Foundation.

The new research published in Health Education Journal aimed to determine individual and group patient ideas and priorities regarding ways to enhance their own health care. View article

Individuals with familial hypercholesterolemia (FH) who participated in the research identified their own priorities, including: the importance of diagnosis, the need for more knowledge, better communication with both healthcare providers and family members, understanding treatment options, outreach for awareness, and the use of technology to improve all of the above.

Overall the study highlighted the importance of empowering individuals with FH, from diagnosis to treatment to advocacy. In particular, related to diagnosis, individuals with emphasized the importance of receiving a definitive diagnosis of FH and not just treading the high cholesterol.

They saw diagnosis as as an important step to gaining access to support networks, specialists and additional information regarding the management of their condition. In addition, by having a definitive diagnosis, most participants were less worried and no longer had to face the blame that their high cholesterol was the fault of their own.

From healthcare providers, individuals are looking for more information on treatments — from availability of treatment options, to how well a treatment works (effectiveness), to side effects and what new treatments are on the horizon.

We were excited to see the importance the individuals with FH placed on building awareness and reaching out to local communities to make themselves available to talk with others and share their resources. Many are motivated to increase general awareness of FH — as we all know that 90% of individuals are undiagnosed. Several discussed outreach ideas, such as becoming volunteer patient advocates with the Family Heart Foundation. If you are interested in becoming an FH Advocate for Awareness you can click here to apply. Several ideas also included handing out educational resources, working with media, and posting more on social media.

the Family Heart Foundation is committed to addressing these priorities and working to make sure every individual with FH is aware of the resources we have available. We would also to love to hear from individuals with FH about your priorities and your story. Share with us here!