Abstract
Background: Heart valve disease (HVD) can cause morbidity and impairment of quality of life (QOL) both before and after intervention. However, descriptions of the QOL of people with HVD across the disease course are limited. We aimed to collect the experience of people living with HVD through qualitative interviews, focusing on how HVD impacts their self-perceived QOL.
Method: Semi-structured interviews were conducted in people with HVD, their family members, and clinical experts. A simple thematic analysis was used to summarise their perceptions of QOL.
Results: We interviewed 34 people with HVD: seven with aortic stenosis, seven with rheumatic heart disease involving the mitral valve, nine with mitral regurgitation, and 11 with valve replacement/repair (mean age 66 years, 56% female). Three family members and five clinical experts were also interviewed. A key contributor to QOL was fatigue: most participants experienced fatigue, even mild fatigue impaired QOL directly, and severe fatigue had devastating effects on QOL. Physical limitations impaired QOL due to the loss of 'normal' activity rather than objective physical limitation. Symptoms of HVD impaired QOL directly, but the indirect effects of valve disease inspiring worry that reduced confidence and activity led to greater impairment.
Conclusions: Fatigue both before and after valve intervention is a contributor to QOL and requires further assessment. Research is recommended into whether fatigue is a specific enough symptom to warrant valvular intervention in HVD.