| 1. |
- 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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| 2. |
- Lundgren, Johan, 1977-
(författare)
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Behind the Screen : -Internet-Based Cognitive Behavioural Therapy to Treat Depressive Symptoms in Persons with Heart Failure
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- IntroductionThe prevalence of depressive symptoms in persons with heart failure is higher than in age- and gender-matched populations not suffering from heart failure. Heart failure in itself is associated with an unpredictable trajectory of symptoms, a poor prognosis, high mortality and morbidity, and low health-related quality of life (HrQoL). With the addition of depressive symptoms to heart failure the negative health effects increase further. Though the negative consequences of depressive symptoms in heart failure are well known, there is a knowledge gap about the course of depressive symptoms in heart failure and about how to effectively manage these symptoms. Pharmacological treatment with serotonin reuptake inhibitors has not been able to demonstrate efficacy in persons with heart failure. In a few studies, cognitive behavioural therapy (CBT) delivered face-to-face, has demonstrated effects on depressive symptoms in persons with heart failure. However, currently there are barriers in delivering face-to-face CBT as there is a lack of therapists with the required training. As a solution to this, the use of Internet-based CBT (ICBT) has been proposed. ICBT has been shown to be effective in treatment of mild and moderate depression but has not been evaluated in persons with heart failure.AimThe overall aim of this thesis was to describe depressive symptoms over time and to develop and evaluate an ICBT intervention to treat depressive symptoms in persons with heart failure.Design and MethodsThe studies in this thesis employ both quantitative (Studies I, II and III) and qualitative (Studies II and IV) research methods. The sample in Study I (n=611) were recruited in the Netherlands. The participants (n=7) in Study II were recruited via advertisements in Swedish newspapers. Studies III and IV used the same cohort of participants (Study III n=50, Study IV n=13). These participants were recruited via an invitation letter sent to all persons who had made contact with healthcare services in relation to heart failure during the previous year, at the clinics of cardiology or medicine in four hospitals in southeast Sweden.Study I had a quantitative longitudinal design. Data on depressive symptoms was collected at baseline (discharge from hospital) and after 18 months. Data on mortality and hospitalisation was collected at 18 and 36 months after discharge from hospital. Study II employed three differentBehind the Screen2patterns of design, as follows: I) The development and context adaptation of the ICBT program was based on research, literature and clinical experience and performed within a multi-professional team. II) The feasibility of the program from the perspective of limited efficacy and function was investigated with a quantitative pre-post design. III) Participants’ experience of the ICBT program was investigated with a qualitative content analysis. Data on depressive symptoms was collected pre and post intervention. The time used for support and feedback was logged during the intervention, and qualitative interviews were performed with the participants after the end of the intervention. Study III was designed as a randomised controlled trial. A nine-week ICBT program adapted to persons with heart failure and depressive symptoms was tested against an online moderated discussion forum. Data on depressive symptoms, HrQoL and cardiac anxiety was collected at baseline (before the intervention started) and after the end of the intervention (approximately 10 weeks after the start of the intervention). Study IV had a qualitative design to explore and describe participants’ experiences of ICBT. The participants were recruited from within the sample in Study III and all had experience of ICBT. Data collection occurred after the ICBT program ended and was carried out using qualitative interviews by telephone.ResultsThe mean age of the samples used in this thesis varied between 62 and 69 years of age. Concerning the symptom severity of heart failure, most persons reported New York Heart Association (NYHA) class II (40-57%) followed by NYHA class III (36-41%). Ischaemic heart disease was the most common comorbidity (36-43%). The vast majority had pharmacological treatment for their heart failure. Six percent of the persons in Study I used pharmacological antidepressants. In Studies II and III, the corresponding numbers were 43% and 18% respectively.Among persons hospitalised due to heart failure symptoms, 38% reported depressive symptoms. After 18 months, 26% reported depressive symptoms. Four different courses of depressive symptoms were identified: 1) Non-depressed 2) Remitted depressive symptoms. 3) Ongoing depressive symptoms. 4) New depressive symptoms. The highest risk for readmission to hospital and mortality was found among persons in the groups with ongoing and new depressive symptoms.A nine-week ICBT program consisting of seven modules including homework assignments on depressive symptoms for persons with heart failure was developed and tested. The RCT study (Study III) showed no significant difference in depressive symptoms between ICBT and a moderated discussion forum. Within-group analysis of depressive symptoms demonstrated a significant decrease of depressive symptoms in the ICBT group but not in the discussion forum group.The participants’ experience of ICBT was described in one theme: ICBT- an effective, but also challenging tool for self-management of health problems. This theme was constructed based on six categories: Something other than usual healthcare; Relevance and recognition; Flexible, understandable and safe; Technical problems; Improvements by live contact; Managing my life better.ConclusionAfter discharge from hospital, depressive symptoms decrease spontaneously among a large proportion of persons with heart failure, though depressive symptoms are still common in persons with heart failure that are community dwelling. Depressive symptoms in persons with heart failure are associated with increased risk of death and hospitalisation. The highest risks are found among persons with long-term ongoing depressive symptoms and those developing depressive symptoms while not hospitalised.ICBT for depressive symptoms in heart failure is feasible. An intervention with a nine-week guided self-help program with emphasis on behavioural activation and problem-solving skills appears to contribute to a decrease in depressive symptoms and improvement of HrQoL.When ICBT is delivered to persons with heart failure and depressive symptoms the participants requests that the ICBT is contextually adapted to health problems related to both heart failure and depressive symptoms. ICBT is experienced as a useful tool for self-care and something other than usual healthcare. ICBT also requires active participation by the persons receiving the intervention, something that was sometimes experienced as challenging.
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| 3. |
- Hjelmfors, Lisa, et al.
(författare)
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Variables Related to Communication About Prognosis Between Nurses and Patients at Heart Failure Clinics in Sweden and the Netherlands.
- 2018
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Ingår i: Journal of Cardiovascular Nursing. - : Lippincott Williams & Wilkins. - 0889-4655 .- 1550-5049. ; 33:2, s. E1-E6
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In contrast to recommendations in recent guidelines, prognosis is not optimally discussed with patients with heart failure (HF). Reasons for not doing so can be related to both patient and provider characteristics.PURPOSE: The purpose of the study was to explore which patient- and nurse-related variables influence discussing prognosis with patients at an HF clinic.METHOD: Data from a previous survey on attitudes and clinical practice of HF nurses on discussing prognosis that was conducted in Sweden and the Netherlands were combined with data from a registration on topics that nurses discussed with their patients during a prespecified week at the HF clinic. Multivariable logistic regression analysis was performed to assess which variables are related to discussing prognosis.RESULTS: A total of 275 HF nurses (mean age, 49 years) and data of 1633 patients with HF (mean age, 71 years) were included in the study. Prognosis was discussed with 42% of all patients during the visit at the HF clinic. Patients with whom prognosis was discussed were more often in New York Heart Association classes III to IV (odds ratio [OR], 1.81; 95% confidence interval [CI], 1.44-2.26). Nurses discussing prognosis reported more knowledge on the topic (OR, 1.71; 95% CI, 1.36-2.16) and discussed more topics with the patient (OR, 1.27; 95% CI, 1.21-1.32). Dutch HF nurses were more likely to discuss prognosis compared with their Swedish colleagues (OR, 1.83; 95% CI, 1.43-2.33).CONCLUSIONS: Discussing prognosis with patients with HF by nurses at the HF clinic is related to the characteristics of patients and HF nurses. Future interventions to improve communications about prognosis therefore should have a broad approach.
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| 4. |
- Kraai, I. H., et al.
(författare)
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"Not getting worse" : a qualitative study of patients perceptions of treatment goals in patients with heart failure
- 2018
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Ingår i: Applied Nursing Research. - : Saunders Elsevier. - 0897-1897 .- 1532-8201. ; 39, s. 41-45
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Tidskriftsartikel (refereegranskat)abstract
- Background Knowledge of patient reported outcomes helps to provide personalized care on a patient level, optimize care on a population level, and identify the most appropriate patient reported outcomes for clinical trials. To be able to provide personalized care to patients with HF, it is important to know which treatment goals patients with HF consider the most important. This is particularly useful for interventions aimed at improving symptoms, functional status, or health-related quality of life. Aim: The aim of this study was (1) to explore which treatment goals patients with heart failure (HF) perceive as important for their treatment and (2) to identify which treatment goals take priority over other treatment goals. Methods: The study had a qualitative design and included one focus group interview with 6 patients with HF. Data were analyzed using qualitative content analysis. Results: The overall theme of this study was found to be Not getting worse. This theme was composed of 4 categories that described how the patients perceived the goals of treatment: to decrease symptoms, to improve physical function, to prevent readmission, and to live a normal life. None of the participants mentioned improved survival or being cured of their HF as a treatment goal. Conclusion Not getting worse was perceived as the treatment goal that matters to patients with HF and is in line with currently used endpoints for the evaluation of a treatment in a clinical trial. More research is necessary to develop endpoints that are consistent with the perception of patients, useful for clinical practice, and measurable.
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| 5. |
- Kärner Köhler, Anita, 1961-, et al.
(författare)
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Patient empowerment and general self-efficacy in patients with coronary heart disease: a cross-sectional study
- 2018
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Ingår i: BMC Family Practice. - : BioMed Central. - 1471-2296. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundIn managing a life with coronary heart disease and the possibility of planning and following a rehabilitation plan, patients’ empowerment and self-efficacy are considered important. However, currently there is limited data on levels of empowerment among patients with coronary heart disease, and demographic and clinical characteristics associated with patient empowerment are not known.The purpose of this study was to assess the level of patient empowerment and general self-efficacy in patients six to 12 months after the cardiac event. We also aimed to explore the relationship between patient empowerment, general self-efficacy and other related factors such as quality of life and demographic variables.MethodsA sample of 157 cardiac patients (78% male; age 68 ± 8.5 years) was recruited from a Swedish hospital. Patient empowerment was assessed using the SWE-CES-10. Additional data was collected on general self-efficacy and well-being (EQ5D and Ladder of Life). Demographic and clinical variables were collected from medical records and interviews.ResultsThe mean levels of patient empowerment and general self-efficacy on a 0–4 scale were 3.69 (±0.54) and 3.13 (±0.52) respectively, and the relationship between patient empowerment and general self-efficacy was weak (r = 0.38). In a simple linear regression, patient empowerment and general self-efficacy were significantly correlated with marital status, current self-rated health and future well-being. Multiple linear regressions on patient empowerment (Model 1) and general self-efficacy (Model 2) showed an independent significant association between patient empowerment and current self-rated health. General self-efficacy was not independently associated with any of the variables.ConclusionsPatients with a diagnosis of coronary heart disease reported high levels of empowerment and general self-efficacy at six to 12 months after the event. Clinical and demographic variables were not independently associated with empowerment or low general self-efficacy. Patient empowerment and general self-efficacy were not mutually interchangeable, and therefore both need to be measured when planning for secondary prevention in primary health care.
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| 6. |
- Lee, Christopher S., et al.
(författare)
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Patterns of self-care and clinical events in a cohort of adults with heart failure: 1 year follow-up
- 2018
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Ingår i: Heart & Lung. - : MOSBY-ELSEVIER. - 0147-9563 .- 1527-3288. ; 47:1, s. 40-46
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Tidskriftsartikel (refereegranskat)abstract
- Background: Heart failure (HF) self-care is important in reducing clinical events (all-cause mortality, emergency room visits and hospitalizations). HF self-care behaviors are multidimensional and include maintenance (i.e. daily adherence behaviors), management (i.e. symptom response behaviors) and consulting behaviors (i.e. contacting a provider when appropriate). Across these dimensions, patterns of successful patient engagement in self-care have been observed (e.g. successful in one dimension but not in others), but no previous studies have linked patterns of HF self care to clinical events. Objectives: To identify patterns of self-care behaviors in HF patients and their association with clinical events. Methods: This was a prospective, non-experimental, cohort study. Community-dwelling HF patients (n = 459) were enrolled across Italy, and clinical events were collected one year after enrollment. We measured dimensions of self-care behavior with the Self-Care of HF Index (maintenance, management, and confidence) and the European HF Self-care Behavior Scale (consulting behaviors). We used latent class mixture modeling to identify patterns of HF self-care across dimensions, and Cox proportional hazards modeling to quantify event-free survival over 12 months of follow-up. Results: Patients (mean age 71.8 +/- 12.1 years) were mostly males (54.9%). Three patterns of self-care behavior were identified; we labeled each by their most prominent dimensional characteristic: poor symptom response, good symptom response, and maintenance-focused behaviors. Patients with good symptom response behaviors had fewer clinical events compared with those who had poor symptom response behaviors (adjusted hazard ratio = 0.66 10.46-0.96], p = 0.03). Patients with poor symptom response behaviors had the most frequent clinical events. Patients with poor symptom response and those with maintenance-focused behaviors had a similar frequency of clinical events. Conclusions: Self-care is significantly associated with clinical events. Routine assessment, mitigation of barriers, and interventions targeting self-care are needed to reduce clinical events in HF patients. (C) 2017 Elsevier Inc. All rights reserved.
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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. |
- Murphy, Patrick J., et al.
(författare)
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The CHARMS pilot study: a multi-method assessment of the feasibility of a sexual counselling implementation intervention in cardiac rehabilitation in Ireland
- 2018
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Ingår i: Pilot and Feasibility Studies. - : BioMed Central. - 2055-5784. ; 4
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Tidskriftsartikel (refereegranskat)abstract
- Many people living with cardiovascular disease (CVD) are affected by sexual problems associated with the condition. International guidelines recommend all patients with CVD should receive sexual counselling, yet this is rarely provided by health professionals. The current study piloted the Cardiac Health and Relationship Management and Sexuality (CHARMS) intervention, a complex multi-level intervention designed to increase the implementation of sexual counselling guidelines in hospital-based cardiac rehabilitation (CR) in Ireland.
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| 10. |
- Säfström, Emma, et al.
(författare)
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Continuity and utilization of health and community care in elderly patients with heart failure before and after hospitalization
- 2018
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Ingår i: BMC Geriatrics. - : BMC. - 1471-2318. ; 18
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Tidskriftsartikel (refereegranskat)abstract
- Background: The period after hospitalization due to deteriorated heart failure (HF) is characterized as a time of high generalized risk. The transition from hospital to home is often problematic due to insufficient coordination of care, leading to a fragmentation of care rather than a seamless continuum of care. The aim was to describe health and community care utilization prior to and 30 days after hospitalization, and the continuity of care in patients hospitalized due to de novo or deteriorated HF from the patients' perspective and from a medical chart review. Methods: This was a cross-sectional study with consecutive inclusion of patients hospitalized at a county hospital in Sweden due to deteriorated HF during 2014. Data were collected by structured telephone interviews and medical chart review and analyzed with the Spearman's rank correlation coefficient and Chi square. A P value of 0. 05 was considered significant. Results: A total of 121 patients were included in the study, mean age 82.5 (+/- 6.8) and 49% were women. Half of the patients had not visited any health care facility during the month prior to the index hospital admission, and 79% of the patients visited the emergency room (ER) without a referral. Among these elderly patients, a total of 40% received assistance at home prior to hospitalization and 52% after discharge. A total of 86% received written discharge information, one third felt insecure after hospitalization and lacked knowledge of which health care provider to consult with and contact in the event of deterioration or complications. Health care utilization increased significantly after hospitalization. Conclusion: Most patients had not visited any health care facility within 30 days before hospitalization. Health care utilization increased significantly after hospitalization. Flaws in the continuity of care were found; even though most patients received written information at discharge, one third of the patients lacked knowledge about which health care provider to contact in the event of deterioration and felt insecure at home after discharge.
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