Low awareness and the often asymptomatic nature of heart valve diseases contribute to the underdiagnosis and undertreatment of these potentially fatal conditions. Millions of cancer survivors who received certain medicines and/or chest-area radiation, for example, are at increased risk for valve disease but are unaware of the risks, what symptoms should drive care-seeking, and where to seek care.
After diagnosis, assessment of treatment options typically does not consider nonclinical outcomes important to patients. Patients may have caregiving responsibilities, limited recovery support, differing views of risks and benefits, and strong personal feelings about not being a “burden.” For many, recovery and downtime are critically important factors in assessing treatment options, but clinical decision making fails to consider those factors.
Research also shows significant differences in decision making that contribute to health disparities. For example, African Americans diagnosed with severe aortic stenosis decline valve-replacement surgery almost twice as often as whites, though surgical outcomes are similar.
We propose to (1) identify and consult heart valve disease survivors (including minorities and cancer survivors) as well as their family caregivers on patient experiences/needs; (2) solicit input from medical professionals, patient advocates, and organizations representing these groups to explore the current gaps hindering better patient outcomes; and (3) host a joint meeting(s) to identify research questions of importance to patients and caregivers. Building on PCORI-funded research on aortic stenosis shared decision making, this effort will complement and help disseminate those results while also identifying unanswered questions ripe for patient-centered outcomes research.