- How do people with heart valve disease understand and experience treatment options (open or minimally invasive surgical procedures and/or medical management) for their condition? What are their perspectives on and expectations of treatment? What are their experiences of accessing, receiving, and recovering from treatment for their heart valve disease?
- How do health care providers who care for people with heart valve disease understand and experience treatment options? What are their perspectives on and expectations of communicating and supporting decision making around treatment options for heart valve disease?
People with heart valve disease struggled with breathlessness, fatigue and pain that limited their ability to live independent and full lives, and left some feeling depressed, lonely and worthless. They saw surgery (either minimally invasive or open heart) as offering hope to live longer and fuller lives. The burden of their symptoms and the trust they placed in their doctors and the procedure were key factors in deciding whether to undergo heart valve surgery, whether either minimally invasive or open heart. Some viewed minimally invasive procedures specifically as being preventative, or pre-empting future health problems, while heart valve surgery in general was seen as potentially opening the door to other treatment options for other health problems or comorbidities.People who were not eligible for minimally invasive surgery felt they were left managing their heart failure symptoms as best as they could, but confronted the inevitable worsening of their symptoms and death. Others decided against minimally invasive surgery, for example due to comorbidities or religious beliefs. Some who decided against the procedure did so because they felt coping with heart failure symptoms was better than living longer with their comorbidities or the potential complications of surgery.Waiting for surgery was hard, involving fear over a potentially worsening condition and requiring coping skills and support. People with heart valve disease had to deal with travel and logistical challenges, including out of pocket expenses, while being assessed and undergoing minimally invasive surgery.People undergoing heart valve surgery expressed appreciating being offered minimally invasive surgery because of the anticipated shorter recovery time. Peoples recovery after heart valve surgery varied, however. For some who underwent minimally invasive procedures, it was an immediate and dramatic change; for others, it was a slower struggle to return to normal. Family caregivers were seen by people who had heart valve surgery as playing a vital role in their recovery. Those who noticed an improvement in their symptoms following surgery reported appreciating a return of their breathing the most, describing once again being able to walk and engage in activities they had missed, leading to increased independence.One study was identified that described health care providers perspectives on heart valve surgery (i.e., TAVI). Cardiologists and cardiac surgeons expressed that they appreciated the short recovery time of minimally invasive procedures, but described their uncertainty around using the procedure in younger patients because of the lack of long-term data on valve durability. They described TAVI as a highly complex procedure with a steep learning curve, needing a dedicated heart team as a key success factor for implementation in a hospital.