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Background: Living with and managing atrial fibrillation (AF) can be complex. Some people have no symptoms, while others have a significant symptom burden. Health-related quality of life (HRQoL) is often low and partly associated with symptom burden. However, the impact of the condition on daily life differs between those affected and is not fully understood. Therefore, more knowledge is needed about patients’ experiences of AF and factors influencing HRQoL. Research indicates that the care of patients with AF needs to change and be more based on personal preferences and values.

Aim: The overall aim of this thesis was to explore patients’ experiences of AF and to evaluate the effects of a nurse-led, person-centred clinic.

Methods: The thesis contains four studies. Study I was based on interviews with 15 patients about their experiences of living with symptomatic AF. Studies II and III were based on data from questionnaires completed before and 6 months after scheduled electrical cardioversion. Study II was a cross-sectional study with 52 women and 115 men describing illness perceptions and HRQoL and exploring their relationship. Study III was a longitudinal study comparing 53 newly diagnosed (<6 months) and 76 previously diagnosed patients with AF (≥6 months) regarding HRQoL, illness perceptions, symptoms, symptom burden, anxiety and depression. Study IV was a randomised controlled trial evaluating the effects of a nurse-led, person-centred clinic on patient-reported outcomes measures in patients with AF. Patients were randomly assigned to a nurse-led intervention group (n=50) or a control group with a physician visit (n=53) and completed questionnaires on the same subjects as in Study III at baseline before the visit to the clinic and 6 months after. Study I were analysed with qualitative content analysis. The other studies are quantitative and were analysed with descriptive statistics (Studies II–IV), comparative statistics (Studies II–IV), and correlation analysis and multiple linear regression analysis (Study II).

Results: In Study I, three themes (striving for illness control, becoming a receiver or an active partner in care, and dealing with a changed self-image) were reflected in the main theme, balancing life. The participants described their struggles in understanding AF, preventing recurrence and managing anxiety. Some were not involved in decision-making, lacked continuity of care, felt that most information focused on medical issues and requested more support and self-care advice. Study II showed that HRQoL was related to and negatively affected by attributing more symptoms, severe consequences, and negative emotions (e.g., anxiety, anger) to AF and perceiving AF as recurrent. Women reported worse HRQoL and lower personal control than men. Study III showed that newly diagnosed (vs. previously diagnosed) patients at baseline reported AF as a more temporary condition to a greater extent and had stronger belief that the illness was controllable. After 6 months, newly diagnosed patients reported better HRQoL, higher personal control, and lower symptom burden than previously diagnosed patients. Over time, HRQoL improved and AF symptom burden and symptoms of anxiety decreased in newly diagnosed patients, who viewed the illness as chronic to a greater extent than at baseline. Study IV showed that, in the nurse-led intervention group, the patients’ negative emotions towards AF decreased more than in the control group. In addition, their concerns regarding AF decreased and their personal control increased. In both groups, HRQoL and patients’ understanding of AF improved.

Conclusions: This thesis demonstrates that for many, AF meant a change in life in which they had to manage anxiety and symptoms and oscillate between being strong and weak and a changed self-image. Men (vs. women) and newly diagnosed (vs. previously diagnosed) patients reported more positive outcomes, such as better HRQoL and greater belief in their ability to control AF. Worse HRQoL was associated with negative illness perceptions, such as more perceived recurrences, symptoms, severe consequences, and negative emotions. The findings in Study IV suggest that the support from a nurse-led person-centred clinic may reduce patients’ negative emotions and concerns attributed to AF and improve their personal control.