SAN DIEGO (FRONTLINE MEDICAL NEWS) – An estimated 41% of patients who experienced a venous thromboembolism (VTE) fear another clot often or almost all the time. In addition, about 25% report abnormal levels of anxiety, and 12% have abnormal depression scores.

Those are key findings from a large survey that set out to estimate the number of bleeding harms and emotional harms experienced by a U.S. population of adults who have experienced a VTE.

“There is emerging research in Europe that shows high levels of stress and anxiety in people who have a thrombosis event,” lead study author Michael Feehan, PhD , said in an interview at the biennial summit of the Thrombosis & Hemostasis Societies of North America. “We interviewed people around the country and found that a lot of them were living with fear, anxiety, and distress. We did a projective exercise and asked, ‘If VTE was an animal, what would it be?’ Many responded with snakes and bears, hostile things. Snakes came up a lot. Snakes can be dormant, and then they can suddenly come out and bite you. That was the kind of language they were using.”

In what he said is the largest study of its kind, Dr. Feehan, a psychologist in the College of Pharmacy at the University of Utah, Salt Lake City, and his associates conducted an online survey of 907 patients aged 18 and older who had experienced a VTE event in the previous 24 months.

The survey was administered in May 2016 and excluded patients with cancer-related VTE. It took about 30 minutes to complete and included questions about the bleeding harms that have occurred since their VTE diagnosis, such as nosebleeds or a cut difficult to control, excessive bruising, vomiting blood, bloody urine, and blood in stools. It also included standardized measures of anxiety, depression, cognitive function, and ratings on eight items of current distress, feeling tense, anxious, confused, depressed, afraid, angry, frustrated, or annoyed.

Self-reported bleeding events included excessive bruising (45%), bleeding from cuts difficult to control (33%), and epistaxis (16%). As for emotional harm, 41% of respondents lived in fear of getting another clot “often” or “almost all the time,” while 25% experienced abnormally high levels of anxiety, and 12% experienced abnormally high levels of depression.

A multivariate structural equation model revealed the following principal factors significantly associated with a composite latent variable of emotional harm: poor health literacy, younger age, the lack of perceived self-control over one’s health, history of medical mistakes in care, and overt barriers to health care access such as transportation limitations and financial limitations (P less than .05 for all associations).

“If you’re working with patients who believe they don’t have any control over their own care, or if they’re younger or have other disease states, or if they have difficulty getting to and from the hospital, all of those things contribute to elevated emotional harms,” Dr. Feehan said. “That level of emotional harm is clinically relevant.”

After the research team shared the study results with staff of the university’s thrombosis services, clinicians started changing how they interview patients. “For example, instead of asking just ‘Have you experienced any VTE symptoms?’ they now ask things like, ‘How are you feeling?’ or ‘How are things going for you living with the disease?’” Dr. Feehan noted. “Then, patients might say, ‘I’m actually quite worried.’ Such questions can help patients open up about how they feel and foster a better relationship with their provider. A better relationship with their provider might help them feel more in control.”

The study was supported by Pfizer Independent Grants for Learning & Change, Bristol-Myers Squibb Independent Medical Education, the Joint Commission, the National Eye Institute, and an unrestricted grant from Research to Prevent Blindness. Dr. Feehan disclosed that he has consulted for Pfizer in the past.

SOURCE: Feehan et al. THSNA 2018, Poster 75 .