How do I understand a misunderstood diagnosis? Navigating uncertainty
|Tina Pittman Wagersemail@example.com|
Six months ago, I suffered a rare kind of heart attack, called a Spontaneous Coronary Artery Dissection (SCAD) while swimming across a lake in Idaho. No one was more surprised than I was to find myself in the role of a heart patient, for I do not fit anyone’s profile of one: I am fit, athletic, had just completed a sprint triathlon two weeks before and have none of the typical cardiovascular disease risk factors. Although the last 6 months have sometimes been sad, confusing and scary, I am heartened (pun intended!) to have made strides as an educated, engaged patient, an involved member of the SCAD community and as a new researcher of SCAD patients’ psychosocial experiences of this little-understood and often fatal heart condition.
The proposed presentation covers a bit of my personal experience, lessons learned, emerging research interests and broader health care lessons. The structure of the presentation would flow as follows:
Here’s a link to an earlier piece I wrote about my SCAD: http://thesocietypages.org/girlwpen/2014/09/29/our-hearts-our-selves-our-research-agenda/
The use of social media in gathering and disseminating information about lesser-known health conditions
Social media is an increasingly important, though imperfect, source of health information and support for patients, especially for conditions that are unusual and where both the care and population are widely and sparsely distributed. It is how I started accessing much of the literature on SCADs and found the SCAD Alliance. We will also be distributing our patient survey (discussed below) over social media.
Psychosocial aspects of health conditions
As a clinical psychologist, I have become especially interested in psychosocial aspects of health conditions which are under-researched, frequently misdiagnosed, and out of sync with the medical community’s assumptions about typical patient profiles. SCAD patients are a subset of (mostly) female heart patients who are at risk for being inadequately or inappropriately treated at various points during their journey, potentially increasing the emotional burden of an already daunting diagnosis.
Understanding your patient and your patient population
There is incredible power in understanding our patients one at a time, but there is also power in understanding the larger patient population whose characteristics, struggles and treatment needs may not have been fully captured in the scientific literature. To that end, I’ve developed a survey in collaboration with cardiologists and colleagues in Boston and Boulder, and board members of SCAD Alliance. We should have some interesting results from the survey by the conference date in September.
Collaborations with non-profits, health care providers and other interested parties For my work, these collaborations have been invaluable sources of information about the findings and mysteries in the field, have helped shape my questions about the psychosocial experiences of SCAD patients AND will help us to formulate more accurate protocols and novel delivery systems for treating patients.
Connection to broader issues in the field
There are a number of broader implications stemming from the topics above, including the use of social media, collaborations, physician-patient relationships, non-profits and women’s health care, which will be discussed.