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Patients’ experiences of atrial fibrillation and an evaluation of a nurse-led person-centred clinic
Umeå University, Faculty of Medicine, Department of Nursing.ORCID iD: 0000-0002-8696-522X
2024 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Patienters upplevelser av förmaksflimmer samt utvärdering av en sjuksköterskeledd personcentrerad mottagning (Swedish)
Abstract [en]

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.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2024. , p. 72
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2295
Keywords [en]
anxiety, atrial fibrillation, experiences, health-related quality of life, illness perception, nursing, nurse-led clinic, patient-reported outcomes, person-centred care, randomised controlled trial, symptoms, symptom burden
National Category
Nursing
Identifiers
URN: urn:nbn:se:umu:diva-223791ISBN: 978-91-8070-345-1 (electronic)ISBN: 978-91-8070-344-4 (print)OAI: oai:DiVA.org:umu-223791DiVA, id: diva2:1854709
Public defence
2024-05-24, Aula Biologica, Biologihuset, Umeå Universitet, Linnaeus väg 7, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2024-05-03 Created: 2024-04-26 Last updated: 2024-04-29Bibliographically approved
List of papers
1. Experiences of living with symptomatic atrial fibrillation
Open this publication in new window or tab >>Experiences of living with symptomatic atrial fibrillation
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2023 (English)In: Nursing Open, E-ISSN 2054-1058, Vol. 10, no 3, p. 1821-1829Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
Keywords
atrial fibrillation, experiences, interviews, qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-200942 (URN)10.1002/nop2.1442 (DOI)000875848500001 ()36309946 (PubMedID)2-s2.0-85141152075 (Scopus ID)
Available from: 2022-11-10 Created: 2022-11-10 Last updated: 2024-04-26Bibliographically approved
2. Illness perceptions and health-related quality of life in women and men with atrial fibrillation
Open this publication in new window or tab >>Illness perceptions and health-related quality of life in women and men with atrial fibrillation
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2024 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 39, no 1, p. 49-57Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Wolters Kluwer, 2024
Keywords
atrial fibrillation, health-related quality of life, illness perceptions
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-206996 (URN)10.1097/JCN.0000000000000995 (DOI)37074949 (PubMedID)2-s2.0-85178651164 (Scopus ID)
Available from: 2023-04-25 Created: 2023-04-25 Last updated: 2024-04-26Bibliographically approved
3. More positive patient-reported outcomes in patients newly diagnosed with atrial fibrillation: a comparative longitudinal study
Open this publication in new window or tab >>More positive patient-reported outcomes in patients newly diagnosed with atrial fibrillation: a comparative longitudinal study
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2024 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953Article in journal (Refereed) Epub ahead of print
Abstract [en]

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.

Place, publisher, year, edition, pages
Oxford University Press, 2024
Keywords
Anxiety, Atrial fibrillation, Depression, Health-related quality of life, Newly diagnosed, Patient-reported outcomes, Symptom burden
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-222452 (URN)10.1093/eurjcn/zvad139 (DOI)
Funder
Umeå UniversitySwedish Heart Lung Foundation
Available from: 2024-03-18 Created: 2024-03-18 Last updated: 2024-04-26
4. The effects of a nurse-led, person-centred clinic on patient-reported outcomes in patients with atrial fibrillation: a randomised controlled trial
Open this publication in new window or tab >>The effects of a nurse-led, person-centred clinic on patient-reported outcomes in patients with atrial fibrillation: a randomised controlled trial
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(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-223809 (URN)
Available from: 2024-04-26 Created: 2024-04-26 Last updated: 2024-04-26

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12345671 of 18
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