| 1. |
- Hellström Ängerud, Karin, 1967-
(författare)
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Symptoms and care seeking behaviour during myocardial infarction in patients with diabetes
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: In Myocardial infarction (MI) it is well established that timely diagnosis and treatment may reduce mortality and improve the prognosis. Therefore it is important that patients with MI seek medical care as soon as possible. Patients with diabetes have a higher risk for MI and worse prognosis compared to patients without diabetes. Previous research is inconclusive regarding symptoms and pre-hospital delay times in MI among patients with diabetes and there is lack of research in how patients with diabetes perceive, interpret and respond to MI symptoms. Aim: The overall aim of this thesis was to explore symptoms and care seeking behaviour during MI in patients with diabetes. Methods: This thesis comprises four studies. Studies I and II were based on data from the Northern Sweden MONICA myocardial infarction registry to describe symptoms in 4028 patients (I) and pre-hospital delay and factors associated with pre-hospital delay of ≥ 2 h in 4266 patients (II). Study III included 694 patients, at five hospitals in Sweden. The patients answered a questionnaire about symptoms, response to symptoms and delay times in MI. In study IV data were collected through interviews about experiences of getting MI and the decision to seek medical care. Results: Study I showed that typical MI symptoms according to MONICA criteria were common in both men and women, both with and without diabetes, and no differences between the groups were found. Study II showed that more patients with diabetes had pre-hospital delay times of ≥ 2 h compared to patients without diabetes. In Study III, chest pain was the most common self-reported MI symptom in patients with and without diabetes and there were no differences between the groups. Shoulder pain/discomfort, shortness of breath and tiredness were more common in patients with diabetes whereas cold sweat was less common compared to patients without diabetes. Less than 40 % of patients with diabetes called the emergency medical services (EMS) as their first medical contact (FMC) and about 60 % initially contacted a spouse after symptom onset. Patients with diabetes reported longer patient delay than patients without diabetes, but after age and gender adjustments the results were not significant. Pain, pressure or discomfort in the stomach, anxiety, symptoms that come and go and thoughts that the symptoms would disappear were associated with longer patient delay in patients with diabetes. In study IV, the analysis revealed the core category “Becoming ready to act” and the categories perceiving symptoms, becoming aware of illness, feeling endangered, and acting on illness experience. Patients with diabetes described a variety of different MI symptoms, the onsets of MI varied and it was sometimes difficult to interpret symptoms as related to MI. The decision to seek medical care for MI was complex with several barriers for timely care seeking. Conclusion: Chest pain was common in patients with diabetes and in contrast to our hypothesis chest pain was equally common in both patients with and without diabetes. There were more similarities than differences in MI symptoms between patients with and without diabetes. However, patients with diabetes were more likely to have pre-hospital delay for 2 hours or more compared to those without diabetes and there seems to be an underutilization of the use of emergency medical services as first medical contact. The process to seek care for MI was complex, initiated by perceiving symptoms, followed by illness awareness, feelings of being endangered and finally acting on the illness experience.
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| 2. |
- Hjelmfors, Lisa, 1984-
(författare)
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Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious.Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals.Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention.Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention.Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals
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| 3. |
- Andreae, Christina, 1969-
(författare)
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Appetite in patients with heart failure : Assessment, prevalence and related factors
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Appetite is an important component in nutrition for maintaining the food intake needed by the body. Decreased appetite is a common clinical problem in patients with heart failure. It has a negative impact on food intake and possibly on malnutrition and health outcomes. There is a lack of evidence on how to assess appetite in heart failure. Furthermore, there are knowledge gaps about factors associated with appetite and which role appetite plays for health status in heart failure. Aim: The overall aim of the thesis was to investigate appetite in patients with heart failure. Four studies were conducted with the goal to evaluate the psychometric properties of the Council on Nutrition Appetite Questionnaire (CNAQ) (I) and to explore the prevalence of decreased appetite and related factors associated with appetite in patients with heart failure (II-IV). Methods: A multicenter study was conducted in three outpatient heart failure clinics in the center of Sweden during 2009-2012. Data were collected through a baseline measurement (I-IV) and an 18-month follow-up (IV). The first study was a psychometric evaluation study (I), while the other studies had an observational cross-sectional design (II-III) and an observational prospective design (IV). One hundred and eighty-six patients diagnosed with heart failure and experiencing heart failure symptoms participated at baseline. At the 18-month follow-up study (IV), one hundred and sixteen participants from the baseline participated. Data were collected from medical records (pharmacological treatment, comorbidity, left ventricle ejection fraction, time of diagnosis), self-reported questionnaires (demographic background data, appetite, symptoms of depression, health status, sleep, self-reported physical activity), objective measurements (anthropometric assessment of body size, blood samples, six minutes’ walk test, and physical activity measured with an actigraph) and clinical assessment (New York Heart Association (NYHA) functional classification, and cognitive assessment). The main outcome variables included appetite (I, II and IV) and health status (III). Descriptive and inferential statistics were used in the studies (I-IV). Results: The majority of the participants had moderate heart failure symptoms, i.e., NYHA class II (n=114, 61%). Most of the participants were men (n=130, 70%). Mean age was 70,7 years, (SD=11,0), and mean BMI was 28.7 (SD=5.3). The CNAQ showed acceptable psychometric properties for assessing appetite in patients with heart failure (I). This thesis shows that 38% of the participants experienced an appetite level that put them at risk of weight loss (I). It was shown that factors such as biological, medical, psychological (II) and physical activity/exercise capacity (IV) are associated with appetite. Also, appetite was associated with impaired health status. However, this association was found to be moderated by symptoms of depression (III). Neither appetite nor physical activity changed during the 18-month follow-up (IV). Conclusion: Decreased appetite is a serious phenomenon that needs attention in the care of patients with heart failure. Health care professionals can now use a validated and simple appetite instrument to assess appetite in heart failure. In addition, attention should be paid to elderly patients and those who have symptoms of depression, sleep problems, impaired cognitive function and impaired physical activity, as well as to patients on suboptimal medical treatment. Higher appetite was shown to contribute to a better health status, but this was only evident in patients without symptoms of depression. Therefore, special attention should be paid to symptoms of depression, as this risk factor affected the association between appetite and health status. This thesis enhances the understanding of the magnitude of the problem with decreased appetite in heart failure both in numbers and factors. New priorities in nutrition care and new ideas can be established, both in practice and in research, in order to improve a nutrition care that is vital for patients with heart failure.
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| 4. |
- Näsström, Lena, 1967-
(författare)
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Participation in heart failure home-care : Patients’ and partners’ perspectives
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Patient participation is important for improving outcomes and respecting selfdetermination and legal aspects in care. Heart failure is a chronic condition that puts high demands on self-care and patient participation. Patients often need advanced care due to deterioration of their heart failure symptoms, and one option is to provide care as home-care. There is limited knowledge of how patients with heart failure and their partners view participation in home-care.Aim: The overall aim of this thesis was to describe different perspectives of participation in structured heart failure home-care among patients with heart failure and their partners.Methods: All patients in this thesis received structured heart failure home-care, according to a model aiming to facilitate care, where safety, participation, and gaining knowledge about the illness and treatment, are in focus. Study I had a prospective pre-post longitudinal design including 100 patients with heart failure receiving home-care. Data was collected by selfadministered questionnaires. Study II had a descriptive design. Nineteen patients receiving home-care were interviewed, and data was analysed using qualitative content analysis. Study III had a descriptive and explorative design. Data was collected by video-recorded observations of 19 home visits and analysed by qualitative content analysis. Study IV had a parallel convergent mixed-method design including 15 partners of patients receiving structured home-care. Data was collected by interviews and self-administered questionnaires. Datasets were first analysed separately and then together.Results: Better self-care behaviour was significantly associated with all measured aspects of participation. Participation by received information increased significantly during the 12-month follow-up (I). Patients’ descriptions of participation included communication between patients and health care professionals, access to care, active involvement in care, a trustful relation with health care professionals, and options for decision-making(II). Observed care encounters revealed that participation was made possible by; (i) interaction, including exchange of care-related information, care-related reasoning, and collaboration, (ii) an enabling approach, including the patient expresses own wishes and shows an active interest, and the nurse is committed and invites to a dialogue (III). Partners scored fairly positive for their participation in care and they performed different levels of caregiving tasks. Descriptions of participation included; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with care providers, and gaining knowledge to comprehend the health situation. The mixed-method results showed both convergent results and expanded knowledge (IV).Conclusions: Structured heart failure home-care facilitated participation both for patients and their partners. Patient participation with regard to received information improved significantly after receiving home-care. Aspects of patient participation were consistently associated with better self-care behaviour. Patients’ and partners’ descriptions revealed many aspects of participation, and observed home visits revealed how interaction and an enabling approach underpinned participation.
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| 5. |
- Klompstra, Leonie, 1982-
(författare)
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Physical activity in patients with heart failure : motivations, self-efficacy and the potential of exergaming
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Adherence to recommendations for physical activity is low in patients with heart failure (HF). It is essential to explore to what extent and why patients with HF are physically active. Self-efficacy and motivation for physical activity are important in becoming more physically active, but the role of self-efficacy in the relationship between motivation and physical activity in patients with HF is unknown. Alternative approaches to motivate and increase self-efficacy to exercise are needed. One of these alternatives might be using exergames (games to improve physical exercise). Therefore, it is important to obtain more knowledge on the potential of exergaming to increase physical activity.The overall aim was to describe the physical activity in patients with HF, with special focus on motivations and self-efficacy in physical activity, and to describe the potential of exergaming to improve exercise capacity.Methods: Study I (n = 154) and II (n = 101) in this thesis had a cross-sectional survey design. Study III (n = 32) was a 12-week pilot intervention study, including an exergame platform at home, with a pretest-posttest design. Study IV (n = 14) described the experiences of exergaming in patients who participated in the intervention group of a randomized controlled study in which they had access to an exergame platform at home.Results: In total, 34% of the patients with HF had a low level of physical activity, 46% had a moderate level, 23% reported a high level. Higher education, higher selfefficacy, and higher motivation were significantly associated with a higher amount of physical activity. Barriers to exercise were reported to be difficult to overcome and psychological motivations were the most important motivations to be physically active. Women had significantly higher total motivation to be physically active. Self-efficacy mediated the relationship between exercise motivation and physical activity; motivation leads to a higher self-efficacy towards physical activity.More than half of the patients significantly increased their exercise capacity after 12 weeks of using an exergame platform at home. Lower NYHA-class and shorter time since diagnosis were factors significantly related to the increase in exercise capacity. The mean time spent exergaming was 28 minutes per day. Having grandchildren and being male were related to more time spent exergaming.The analysis of the qualitative data resulted in three categories describing patients’ experience of exergaming: (i) making exergaming work, (ii) added value of exergaming, (iii) no appeal of exergaming.Conclusion: One-third of the patients with HF had a low level of physical activity in their daily life. Level of education, exercise self-efficacy, and motivation were important factors to take into account when advising patients with HF about physical activity. In addition to a high level of motivation to be physically active, it is important that patients with HF have a high degree of exercise self-efficacy.Exergaming has the potential to increase exercise capacity in patients with HF. The results also showed that this technology might be suitable for some patients while others may prefer other kinds of physical activity.
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| 6. |
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| 7. |
- Lycholip, Edita, et al.
(författare)
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The dynamics of self-care in the course of heart failure management: data from the IN TOUCH study
- 2018
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Ingår i: Patient Preference and Adherence. - : DOVE MEDICAL PRESS LTD. - 1177-889X. ; 12, s. 1113-1122
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Self-care is an important patient-reported outcome (PRO) for heart failure (HF) patients, which might be affected by disease management and/or telemonitoring (TM). The number of studies reporting the influence of TM on self-care is limited. Aims: This study aimed: to assess whether TM, in addition to information-and-communication-technology (ICT)-guided disease management system (ICT-guided DMS), affects self-care behavior; to evaluate the dynamics of self-care during the study; to investigate factors contributing to self-care changes; and to identify a patient profile that predisposes the patient to improvement in self-care. Methods: In the INnovative ICT-guided-DMS combined with Telemonitoring in OUtpatient clinics for Chronic HF patients (IN TOUCH) study, 177 patients were randomized to either ICT-guided DMS or TM+ICT-guided DMS, with a follow-up of 9 months. The current analysis included 118 participants (mean age: 69 +/- 11.5 years; 70% male) who filled the following PRO instruments: the nine-item European Heart Failure Self-care Behaviour scale (EHFScBs), Hospital Anxiety and Depression scale (HADs), and Minnesota Living with HF Questionnaire (MLHFQ). Results: The baseline level of self-care was better in the TM+ICT-guided-DMS group (n=58) compared to ICT-guided-DMS group (n=60, p=0.023). Self-care behavior improved in the ICT-guided-DMS group (p amp;lt; 0.01) but not in the TM+ICT-guided-DMS group. Factors associated with self-care worsening were as follows: higher physical subscale of MLHFQ (per 10 points, p amp;lt; 0.05), lower left ventricular ejection fraction (LVEF) (per 5%, p amp;lt; 0.05), lower New York Heart Association (NYHA) class (class III vs class II, p amp;lt; 0.05). The subgroups of patients who had an initial EHFScBs total score amp;gt; 28, or from 17 to 28 with concomitant HADs depression subscale (HADs_D) score amp;lt;= 8, demonstrated the greatest potential to improve self-care during the study. Conclusion: TM did not have an advantage on self-care improvement. Poor physical aspect of quality of life. lower LVEF, and lower NYHA class were associated with self-care worsening. The greatest self-care improvement may be achieved in those patients who have low or medium initial self-care level in the absence of depression.
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| 8. |
- Mourad, Ghassan, 1974-, et al.
(författare)
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The associations between psychological distress and healthcare use in patients with non-cardiac chest pain : does a history of cardiac disease matter?
- 2018
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Ingår i: BMC Psychiatry. - : Springer Science and Business Media LLC. - 1471-244X. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Psychological distress such as somatization, fear of body sensations, cardiac anxiety and depressive symptoms is common among patients with non-cardiac chest pain, and this may lead to increased healthcare use. However, the relationships between the psychological distress variables and healthcare use, and the differences in relation to history of cardiac disease in these patients has not been studied earlier. Therefore, our aim was to explore and model the associations between different variables of psychological distress (i.e. somatization, fear of body sensations, cardiac anxiety, and depressive symptoms) and healthcare use in patients with non-cardiac chest pain in relation to history of cardiac disease.METHODS: In total, 552 patients with non-cardiac chest pain (mean age 64 years, 51% women) responded to the Patient Health Questionnaire-15, Body Sensations Questionnaire, Cardiac Anxiety Questionnaire, Patient Health Questionnaire-9 and one question regarding number of healthcare visits. The relationships between the psychological distress variables and healthcare visits were analysed using Structural Equation Modeling in two models representing patients with or without history of cardiac disease.RESULTS: A total of 34% of the patients had previous cardiac disease. These patients were older, more males, and reported more comorbidities, psychological distress and healthcare visits. In both models, no direct association between depressive symptoms and healthcare use was found. However, depressive symptoms had an indirect effect on healthcare use, which was mediated by somatization, fear of body sensations, and cardiac anxiety, and this effect was significantly stronger in patients with history of cardiac disease. Additionally, all the direct and indirect effects between depressive symptoms, somatization, fear of body sensations, cardiac anxiety, and healthcare use were significantly stronger in patients with history of cardiac disease.CONCLUSIONS: In patients with non-cardiac chest pain, in particular those with history of cardiac disease, psychological mechanisms play an important role for seeking healthcare. Development of interventions targeting psychological distress in these patients is warranted. Furthermore, there is also a need of more research to clarify as to whether such interventions should be tailored with regard to history of cardiac disease or not.
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| 9. |
- Mourad, Ghassan, 1974-, et al.
(författare)
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What are patients with heart failure willing to pay for an exergame intervention?
- 2019
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Konferensbidrag (refereegranskat)abstract
- Background: Regular physical activity in patients with heart failure (HF) improves physical capacity and quality of life, and may reduce health care utilization. One low-cost effective physical activity intervention to increase exercise capacity is exergaming. Exploring patients’ willingness to pay (WTP) for treatments/interventions is a way to obtain a monetary value for the health consequences of an intervention. This can further be used in economic evaluations.Aim: The aim of this study was to describe patients´ WTP for an exergame intervention and to determine factors influencing the WTP.Methods: This is a substudy of the Swedish cohort of the HF-Wii study (evaluating the effect of exergaming on exercise capacity in patients with HF; clinicaltrial.gov NCT01785121) including 34 patients who finished the 1-year follow-up. Structured telephone interviews were conducted focusing on WTP for the exergame intervention they received during the study including an exergame platform, an introduction lesson, installation of the exergame computer, and telephone follow-ups, and with an estimated cost of ∼€440 per patient. The WTP methodology used was adjusted for this specific study.Patients were also asked to rate their level of satisfaction with the intervention on a Numeric Rating Scale (NRS) from 0-10. In addition, information on background variables and income was collected during the interview, while data on six minute walk test (6MWT) and quality of life was retrieved from previous data collection in the main study.Results: In total, 29 patients with HF participated in this substudy, mean age 68±9 years, 69% males, and with a mean household disposable income/month of ∼€2700 (±1360). Ten patients (34.5%) had a clinically significant effect of the exergaming and improved more than 30 meters on the 6MWT.The average WTP for the exergame intervention was ∼€160 (range €0-580). Most patients were satisfied with the exergame intervention and the median score was 8 on the NRS. The satisfaction level was significantly related to WTP (rs=0.468, p=0.012). Patients with higher satisfaction levels were willing to pay more (€210±165) for the exergame intervention than those with lower satisfaction levels (€60±70), p=0.015. Income, changes in 6MWT, and quality of life showed no significant relationship to WTP.Conclusions: The WTP for an exergame intervention varied largely in patients with HF despite high satisfaction level with the intervention. The satisfaction level was the only factor influencing patients´ WTP. On average, patients were willing to pay about one-third of the cost of the exergame intervention. Future studies should focus on the cost-effectiveness of this intervention.
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| 10. |
- Perkiö Kato, Naoko, RN, PhD, 1980-, et al.
(författare)
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Development of an Instrument for Measuring Self-Care Behaviors After Left Ventricular Assist Device Implantation.
- 2019
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Ingår i: Progress in transplantation. - : Sage Publications. - 2164-6708 .- 1526-9248. ; 29:4, s. 335-343
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Successful long-term left ventricular assist device (LVAD) therapy necessitates a high degree of self-care. We aimed to develop an instrument that measures self-care behaviors in adult patients living with an LVAD.METHODS: We used the method to develop patient-reported outcomes recommended by the US Food and Drug Administration. Prior to developing the instrument, a literature review was conducted to generate items using the middle-range theory of self-care of chronic illness as a guiding framework. A 2-round Delphi method, involving 17 clinicians with expertise in heart failure and assist devices from the Netherlands, Israel, United States, Canada, and Japan, was used to generate and select items. In the first Delphi survey, the levels of importance, relevance, and clarity of items in the instrument were evaluated. The second Delphi survey was performed to gain consensus on the final selection of items. We also examined face validity.RESULTS: A preliminary 37-item version of the Self-Care Behavior Scale was produced. The first panel judged 33 items as important and relevant, taking out 4 items due to vague wording and duplication and adding in 4 items. In the final 33-item version, 19 items address self-care maintenance behaviors, 10 items address self-care monitoring behaviors, and 4 items address self-care management behaviors. Patients (N = 25) did not have any difficulties understanding items and report any missing items.CONCLUSION: The 33-item Self-Care Behavior Scale for patients with heart failure having an LVAD has been developed and is ready for further psychometric testing.
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