Lessons learned from women with INOCA critical to improving patient-centered care
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Key takeaways:
- Learning from women’s experiences may be key to improving INOCA diagnosis and care.
- Four themes that may improve clinical practice were garnered from structured interviews.
The experiences of women who recounted their journey from first feeling the symptoms of ischemia and no obstructive CAD to receiving their diagnosis could lead to more patient-centered care in clinical practice, researchers reported.
To better understand the patient experience of receiving a diagnosis of INOCA, Leslie Yingzhijie Tseng, MS, of the Yale School of Medicine, and colleagues conducted structured telephone interviews with two groups of women with INOCA who underwent coronary angiography: 20 women who received coronary function testing as well and nine who did not.
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“Many women with INOCA have poor exercise tolerance and impaired functional status, resulting in repeat testing and hospitalizations that may not lead to a diagnosis yet incur costs similar to those for obstructive CAD,” the researchers wrote. “It is possible that the psychological burden of medical uncertainty in the face of not feeling well portends worse cardiovascular outcomes, whereas a definitive diagnosis might promote a better understanding of disease physiology and greater control and agency.”
The researchers evaluated the effects of a coronary function testing-informed INOCA diagnosis on the health care experience, quality of life and emotional states among these women (mean age, 60 years; 79% white).
The interviews yielded four overarching themes representative of the women’s experience with their INOCA diagnosis.
The first theme was distress from symptoms of uncertain cause, characterized by symptom constellation; struggle for sensemaking; the emotional toll while navigating symptoms; and the threat to personal and professional identity.
The second theme was related to the pathway to reach a definitive INOCA diagnosis, which included patient self-advocacy and fortitude; the uncertainty and trauma of navigating health care interactions; the benefits of forming a “therapeutic alliance” to navigate health care interactions; and access to reliable sources of information.
The third theme involved how INOCA diagnosis enabled a path forward, with the women reporting feelings of relief, validation and empowerment.
The fourth theme garnered from the interviews was the women’s commitment to promoting awareness and supporting other women and the recognition of sex and racial/ethnic disparities in INOCA diagnosis.
“Results from this qualitative study provide novel insights into how women experience the symptoms of INOCA and their interactions with clinicians and the health care system,” the researchers wrote. “For health care providers and researchers seeking to improve health care experiences and quality of life for women with INOCA, these findings, from the voices of women with INOCA, hold powerful lessons and tips for more patient-centered care.”
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