Do we Need to Treat the Spouse as well as the A-Fib Patient?

I recall a heart-wrenching email I received late at night from the distressed wife of an Atrial Fibrillation patient. She described how the stress and anxiety of her husband’s A-Fib had reeked havoc with the entire family and placed the burden of their family-run business entirely on her shoulders. The impact of A-Fib had permeated their entire lives.

Her email ended on a positive note, though, as she told me she couldn’t wait for her husband to wake up so she could share the wealth of information and encouragement she had found on our website, A-Fib.com.

Quality of Life for Family and Spouse of A-Fib Patients

Research verifies that living with someone with Atrial Fibrillation may be about as stressful as actually having the condition. While A-Fib is known to lower ‘quality of life’ among patients, researchers wanted to find out how the families coped.

In one study (Kopan, et al), researchers surveyed 260 patients and 94 spouses attending an educational symposium on living with Atrial Fibrillation.

Patients with atrial fibrillation reported a significant reduction in their quality of life, and their mates described the same, according to Dr. Bruce A. Koplan of Brigham and Women’s Hospital in Boston.

The overall quality of life effects reported by these two groups did not differ significantly. Perceived impacts were:

• Mild impact for 45.1% of patients and 43% of spouses
• Moderate impact for 28.6% of patients versus 25.8% of spouses
• Severe impact for 26.3% of patients and 31.2% of spouses

In a second study (Bohnen, et al) results were similar: 568 subjects completed the survey of which 411 were A-Fib patients and 129 were spouses/partners. The perceived effect of A-Fib on overall ‘quality of life’ was similar between patients and spouses. (Results did not change when adjusted for age and gender.)

Perceived impacts were: Mild for 42.0% of patients vs. spouses 44.1%; Moderate for 26.0% of patients vs. spouses 25.2%; and Severe for 32.0% of patients vs. spouses 31.7%.

Note: the adverse effect of A-Fib on patients’ sex life was the domain most frequently reported as being severely impaired.

Educate the Family Not Just the Patient

One simple solution might be to make sure the spouse comes to office visits, particularly during the early visits around the time of diagnosis, Dr. Koplan said. “Sometimes spouses come but stay in the waiting room,” he said. “But I don’t think that’s a good idea because they’re suffering too.”

According to Dr. Koplan, educational programs and other interventions aimed at improving patients’ quality of life should take spouses into account as well. Eliminating some of the unknowns may relieve the anxiety for both.

What Patients Need to Know

One of the most frequently asked questions at A-Fib.com is “What can I do for my spouse during an A-Fib attack?” Perhaps, A-Fib patients should also ask, “How can I help my family cope with the stress and anxiety of my atrial fibrillation?”

When I talk with an A-Fib patient, I always ask how their spouse or partner is doing―how they are coping. This often elicits a momentarily pause while the patient stops and ponders the impact of A-Fib on their family.

My best advice to patients is to get all your loved ones involved! Talk with them, answer their questions. Start with my report, “Top 10 Questions Families Ask about Atrial Fibrillation”, and then Why & How to Create Your ‘A-Fib Episode Action Plan’.