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Aims: To evaluate the effects of a nurse-led, person-centred outpatient clinic on patient-reported outcomes in patients with atrial fibrillation (AF).

Methods and results: In this open-label, parallel randomized controlled trial, 140 patients with AF were randomly assigned. The intervention group met experienced cardiac nurses, trained in person-centred care and AF. The control group met a physician in accordance with usual care. At baseline, and after 6 months, patients completed questionnaires: The EuroQol five-dimension three-level questionnaire (EQ-5D-3L), the EuroQol Visual Analogue Scale, the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA), the Brief Illness Perception Questionnaire (B-IPQ), and the Hospital Anxiety and Depression Scale. Over time, health-related quality of life (HRQoL), as measured by the EQ-5D index and the ASTA mental subscale, improved in the intervention group (P = 0.035 and P  = 0.014, respectively) and the control group (P = 0.031 and P = 0.026, respectively). Illness coherence (B-IPQ) also improved in both groups (P < 0.001 and P = 0.012, respectively). In the nurse-led group, HRQoL as measured by the ASTA total scale (P = 0.035) and personal control (B-IPQ) (P = 0.005) improved, while illness-related concerns (P = 0.008) and emotional representations (B-IPQ) (P = 0.001) decreased. There were no significant between-group differences on any of the analysed measurement instruments.

Conclusion: No significant differences were observed between groups. However, improvements in HRQoL and illness coherence in both groups suggest that receiving support from nurses and physicians may improve these outcomes. Furthermore, the results suggest that a nurse-led, person-centred outpatient clinic may reduce patients’ emotional responses and concerns related to the illness, while strengthening their sense of personal control.

BACKGROUND: Health-related quality of life (HRQoL) is worse in patients with atrial fibrillation (AF) compared with other populations. Factors affecting HRQoL in patients with AF are not fully clarified. Illness perceptions are important determinants of disease management and may affect HRQoL.

OBJECTIVE: The aims of this study were to describe illness perceptions and HRQoL in women and men with AF and to explore the relationship between illness perceptions and HRQoL in patients with AF.

METHODS: This cross-sectional study included 167 patients with AF. Patients completed the Revised Illness Perception Questionnaire and HRQoL questionnaires: Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmias, the three-level version of the EuroQol 5-dimensional questionnaire, and EuroQol visual analog scale. Subscales of the Revised Illness Perception Questionnaire significant in correlation analysis with the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmias HRQoL total scale were included in a multiple linear regression model.

RESULTS: Mean age was 68.7 ± 10.4 years, and 31.1% were women. Women reported lower personal control (P = .039) and worse HRQoL measured with the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmias physical subscale (P = .047) and the EuroQol visual analog scale (P = .044) compared with men. Illness identity (P < .001), consequences (P = .031), emotional representation (P = .014), and timeline cyclical (P = .022) were related to and adversely affected HRQoL.

CONCLUSIONS: This study found a relationship between illness perceptions and HRQoL. Some subscales of illness perceptions negatively affected HRQoL in patients with AF, which indicates that efforts to change illness perceptions may be helpful in improving HRQoL. Patients should be given the opportunity to talk about the disease, their symptoms, their emotions, and the consequences of the disease to enable increased HRQoL. A challenge for healthcare will be to design support for each patient based on his/her illness perceptions.

Aims: To compare patient-reported outcomes (PROs) in patients newly (<6 months) diagnosed with atrial fibrillation (AF) with those who have had a longer diagnosis (≥6 months) and to investigate whether or not these outcomes change over a 6-month period.

Methods and results: In this longitudinal survey study, 129 patients with AF completed the Revised Illness Perception Questionnaire, the Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia, and the Hospital Anxiety and Depression Scale at baseline and after 6 months. At baseline, patients newly diagnosed with AF (n = 53), compared with patients with a previous diagnosis (n = 76), reported AF as more temporary (P = 0.003) and had a higher belief in personal and treatment control (P = 0.004 and P = 0.041, respectively). At a 6-month follow-up, patients newly diagnosed reported a lower symptom burden (P = 0.004), better health-related quality of life (HRQoL); (P = 0.015), and a higher personal control (P < 0.001) than patients previously diagnosed. Over time, in patients newly diagnosed, symptom burden and the anxiety symptom score decreased (P = 0.001 and P = 0.014, respectively) and HRQoL improved (P = 0.002).

Conclusion: Patients newly diagnosed with AF reported more positive PROs both at baseline and at a 6-month follow-up than patients with a previous diagnosis of AF. Therefore, it is important to quickly capture patients newly diagnosed to support their belief in their own abilities. Such support may, alongside medical treatments, help patients manage the disease, which may lead to reduced symptom burden and better HRQoL over time.

AIM: To explore the experiences of living with symptomatic atrial fibrillation.

DESIGN: This study, with a descriptive qualitative adesign, was performed using semi-structured individual interviews.

METHOD: Six women and nine men with symptomatic atrial fibrillation were included. The transcribed interviews were analysed using qualitative content analysis. The COREQ checklist was followed.

RESULTS: The analysis resulted in a main theme, namely balancing life and included the themes striving for illness control, becoming a receiver or an active partner in care and dealing with changed self-image. The participants strived to understand their illness, prevent attacks and manage anxiety. Some of the participants were not involved in decision-making, were uninformed about self-care measures, reported a lack of continuity in care and felt that the doctors focused on information about the medical part of care.

Aim: The aim of this study was to explore patients’ experiences of preventive anticoagulation therapy in atrial fibrillation.

Design: This was a descriptive qualitative study based on interviews.

Methods: Individual interviews with 15 patients, 6 women and 9 men, treated with preventive oral anticoagulant due to atrial fibrillation, were conducted. The interviews were analysed with qualitative content analysis.

Results: Based on the analysis, the theme Managing a necessary evil emerged. The theme comprised the three categories: Coping with anxiety and changes in daily life, Having confidence in care and Being a partner or only a receiver of treatment. Patients described it like being faced with a situation where a treatment perceived as vital was weighed against undesirable consequences and risks. Patients trusted caregivers and had confidence in care, but there was a risk of being a receiver of care instead of becoming a partner.

Background: Transcatheter aortic valve implantation may be indicated for patients with aortic stenosis and high risk of postoperative mortality. The assessment of suitability for transcatheter aortic valve implantation requires consensus agreement of a team of cardiologists and cardiac surgeons. The burden of comorbidities, frailty and cognitive impairment are factors included when risks for transcatheter aortic valve implantation are balanced against the expected benefits. Although transcatheter aortic valve implantation is a possibility for many, there are still ineligible patients. Knowledge of their experiences of being deemed ineligible are lacking. Aim: The aim of this study was to explore patients' experiences of being considered for transcatheter aortic valve implantation but judged ineligible. Methods: Individual in-depth interviews were performed with eight persons, and qualitative content analysis was used for the analysis. Results: Being ineligible for transcatheter aortic valve implantation may induce both hope and despair. Hope was linked to experiences of acceptance, relief of symptoms, support and control; despair was associated with feelings of being missed and abandoned, and of grief and insecurity. Some expressed great anxiety, since their incurable heart disease meant an imminent death. Others were more concerned over practical problems that affected everyday life. Conclusion: Being ineligible for transcatheter aortic valve implantation does not necessarily lead to despair. Hope is built through relationships, continuity and support. A combination of person-centred care and palliative care during the end-of-life phase should be offered to patients in order to help clients re-conceptualise hope during this stage of their illness. Cardiovascular nurses in the transcatheter aortic valve implantation team are suitable to facilitate continued care based on the patient's needs, desires and local conditions.

Aim: The aim of this study was to explore how patients experienced the recovery process from transcatheter aortic valve implantation. Design: A qualitative approach where in-depth interviews were used. Method: Eleven men and eight women undergoing transcatheter aortic valve implantation were individually interviewed 6 months after transcatheter aortic valve implantation. Grounded theory was used for the analysis. Results: The analysis generated the core concept "A journey of balancing between life-struggle and hope" connected to descriptive, bipolar categories. Before transcatheter aortic valve implantation patients not only felt threatened but also experienced hope. The rehabilitation phase was described as demanding or surprisingly simple. At the 6 months follow-up patients were pleased to return to life, however, still struggling with limitations. To feel hope is essential for transcatheter aortic valve implantation patients' well-being, both before and during the recovery process. It is important that healthcare professionals not only support hopeful thinking but also take time to discuss and prepare patients, talk about concerns and build confidence. Individual plans for rehabilitation should be designed.

Background: Aortic stenosis is the most common valve disease in western countries and has poor prognosis without treatment. Surgical aortic valve replacement (SAVR) is the gold standard, and transcatheter aortic valve implantation (TAVI) is a new method that is used in high-risk patients who are denied surgery. The purpose of treatment is not only to save life, but also to reduce symptoms and increase health-related quality of life (HRQoL).

Objective: The aim of this study was to describe patients’ self-reported outcomes in terms of physical function, symptoms, dependence, HRQoL, and cognitive function after TAVI and SAVR.

Methods: All patients treated with TAVI during 1 year (n = 24) and age-matched patients treated with SAVR (n = 24) were included. Data were collected on the day before and at 6 months after treatment using structural questionnaires.

Results: Self-rated function was low before treatment and increased at follow-up. A quarter of all patients reported syncope at baseline, and none reported this at follow-up. Breathlessness was reported by all patients to be the most limiting cardiac symptom, but the TAVI patients reported more severe symptoms. At 6 months’ follow-up, symptoms were reduced, but breathlessness and fatigue were still common, especially in the TAVI group. HRQoL, which was very low in the TAVI group at baseline, increased in all dimensions except social function.

Conclusion: We found no change in cognitive function or dependence at follow-up. There was no difference in the size of improvement between groups. The results could be helpful when informing future patients in order to give them realistic expectations.

BACKGROUND: Aortic stenosis (AS) is the most common valve disease in Western countries. Transcatheter aortic valve implantation (TAVI) has made it possible to treat patients with higher surgical risks. These patients are informed about their poor prognosis with only months or a few years to live without treatment. Because of their severe symptoms, limitations, and suffering, patients awaiting TAVI need special attention.

OBJECTIVE: The aim of this study is to describe patients' experiences of coping with severe AS and of waiting for TAVI.

METHODS: Swedish participants (n = 24; 9 women, 15 men) with a mean (SD) age of 80 (7.4) years who had been offered TAVI all agreed to participate in a presurgical interview. The interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis.

RESULTS: The participants' experiences of coping with AS and awaiting TAVI were described by the main theme "living on the edge, but trying to stay in control," which comprised 3 categories: "trying to cope with physical symptoms and anxiety," "trying to preserve self and self-esteem despite life-threatening illness," and "trying to process the decision to undergo TAVI."

CONCLUSIONS: Patients with AS and awaiting TAVI must cope with increasing symptoms and limitations in their social lives but still wish to be seen as the people they always have been. These patients may need extra support from healthcare personnel to process their experiences, which could help them to attach personal meaning to clinical information about the condition and its treatment that they could include in their decision about whether to undergo TAVI. Listening to patients' stories could help nurses and physicians to ensure that disease and treatment are meaningfully understood by the patient.

The overall aim of this thesis is to explore experiences and self-reported outcomes from Transcatheter Aortic Valve Implantation, TAVI, among people with severe aortic stenosis. The thesis includes four studies. Study I-II are based on interviews performed the day before TAVI and Qualitative Concept Analysis was used for analysis. Study III is based on interviews at six months’ follow-up and Grounded Theory was used for analysis. Study IV is quantitative and based on questionnaires at baseline and at six months’ follow-up. Nonparametric, descriptive statistics were used for the analysis.

Study I described the vulnerable situation for patients with severe aortic stenosis before TAVI. They were facing death and at the same time struggling to cope with their symptoms and to maintain independent. TAVI offered hope but also caused uncertainty about the new method.

Study II focused on the patients’ decision-making process. Three patterns were identified; ambivalent, obedient, and reconciled. The ambivalent patient is unsure of the value of treatment and aware of the risks; the obedient patient is unsure of the value of one's own decision and wants to leave the decision to others; the reconciled patient has reached a point where there is no choice anymore and is always sure that the decision to undergo TAVI is right.

Study III offered a deeper understanding of the TAVI trajectory. A journey of balancing between hope and life-struggle was the core category of the analysis. Before TAVI patients felt threatened, but also experienced hope. The rehabilitation phase was described as demanding and depressing or surprisingly simple. At the six months’ followup patients described being pleased to return to life, however, many were still struggling with limitations.

Study IV focused on quantifying the symptom burden, function and health related quality of life before and after TAVI. The results were reflected against that of patients treated with open surgery. Self-rated function and health related quality of life increased and symptoms were reduced at follow-up, but breathlessness and fatigue were still common.

Conclusively, TAVI patients are struggling with limitations, both because of their comorbidities and because of their valve disease which also poses a threat to their lives. TAVI gives an opportunity to survive, to stay independent and to increase quality of life. To feel and preserve hope is essential for patients’ wellbeing, both before and during the recovery process.