Introduction: Chronic diseases tend to increase with old age. Older people with chronic disease are commonly suffering from conditions which produce a multiplicity of symptoms and a decreased health-related quality of life. Nurses have a responsibility to prevent, ease or delay a negative outcome through symptom management, or assist in achieving an acceptable level of symptom relief. Aim: The overall aim of the thesis was to describe different aspects of symptom burden from the perspective of community-dwelling people with chronic disease. Methods: This thesis is based upon four papers that used both quantitative and qualitative data to describe different aspects of symptom burden, experienced by people with chronic diseases. Paper (I) is a cross-sectional study with 91 participants diagnosed with chronic obstructive pulmonary disease. Papers (II and IV) are based upon secondary outcome data from a randomized controlled trial with 382 community-dwelling older people with multimorbidity. Paper (II) is a cross-sectional study and Paper (IV) has a descriptive and an explorative design reporting on the trajectory of symptom prevalence and symptom burden. Paper (III) is a qualitative study with participants from the AGe-FIT. Results: Among people diagnosed with COPD the most prevalent symptoms with the highest symptom burden scores were shortness of breath, dry mouth, cough, sleep problems, and lack of energy, with just a few differences between participants with moderate and severe airflow limitation (I). For older people with multimorbidity, pain was the symptom with the highest prevalence and burden. Other highly prevalent symptoms were lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score (II). The symptoms experienced by the older people were persistent and the symptom burden remained high over time (IV). The experience of living with a high symptom burden was described as an endless struggle. The analysis revealed an overall theme, “To adjust and endure” and three sub-themes, “to feel inadequate and limited”, “to feel dependent”, and “to feel dejected” (III). Conclusions: The results of this thesis indicate the importance of early symptom identification. People with chronic diseases have an unmet need for optimized treatment that focuses on the total symptom burden, and not only disease specific symptoms. A large proportion of older people with multimorbidity suffer a high and persistent symptom burden, and the prevalence and trajectory of pain are high. Older people sometimes think their high age is the reason they experience a diversity of symptoms, and they do not always communicate these to their health-care provider.

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The purpose of this dissertation was to evaluate the biological, behavioral, and psychosocial attributes of individuals diagnosed with chronic obstructive pulmonary disease (COPD). Specific aims were to: 1) explore the predictive power of spirometry measures for event-free survival in patients with heart failure and suspected COPD, focusing on the differences in survival between those with and without airflow limitation; 2) examine the psychometric properties of the Multidimensional Scale of Perceived Social Support (MSPSS) in patients with concomitant COPD and heart failure; and 3) test the efficacy of a theory-based, multidimensional, self-care educational intervention using an eHealth platform on measures of symptom severity and variability, anxiety and depressive symptoms, perceived self-care ability, perceived self-care adherence, and selfcare information needs (knowledge) in a sample of adult patients with stable COPD. Specific aim one was addressed by evaluation of the predictive power of spirometry measures (forced expiratory volume/second [FEV1], forced vital capacity [FVC], and the ratio of FEV1/FVC) for event-free time to combined hospitalization/mortality after controlling for clinical and sociodemographic variables. This analysis revealed that those patients with airflow limitation were 2.2 times more likely to experience hospitalization/mortality compared to those without airflow limitation. The second specific aim was addressed with a psychometric evaluation of the Multidimensional Scale of Perceived Social support (MSPSS) which included determination of internal consistency reliability, the factor structure and construct validity by hypothesis testing in participants with comorbid COPD and heart failure. The MSPSS was a valid and reliable instrument to measure perceived social support in patients with comorbid COPD and heart failure. The third specific aim was addressed by a trial of an eHealth educational intervention in participants with COPD (N = 20). This intervention resulted in significant change in symptom severity evaluation in patients categorized as having medium symptom severity for the following symptoms: distress due to cough, chest tightness, dyspnea with activity and fatigue; these symptoms were perceived as more severe in the intervention period. Anxiety, depressive symptoms and perceived self-care ability were unchanged; however, perceived self-care adherence scores improved, and knowledge needs were significantly reduced after the intervention.

Chronic pulmonary diseases include a wide range of illnesses that differ in etiology, prevalence, symptomatology and available therapy. A common link among these illnesses is their impact on patients’ vital function of breathing, high symptom burden and significantly impaired quality of life. This dissertation research evaluates disease severity, symptom burden and health behaviors of patients with three different chronic pulmonary conditions. First, alpha-1 antitrypsin deficiency (AATD) is an inherited condition that typically is associated with an increased risk of early onset pulmonary emphysema. This study examines differences in demographic, health, and behavioral characteristics and compares clinical outcomes and health related behaviors and attitudes between two severe genotypes of AATD - ZZ and SZ. The findings of the study suggest that patients with SZ genotype and less severe form of deficiency report higher number of exacerbations, comorbidities, as well as unhealthy behaviors such as lack of exercise and current smoking. In addition, individuals with the more severely deficient ZZ genotype are more adherent to disease management and prevention program recommendations and maintain a healthier lifestyle than individuals with SZ genotype. Second chronic lung disease examined in this research was chronic obstructive pulmonary disease (COPD), the fourth leading cause of death and second leading cause of disability in the United States. Prevalence and burden of cough and phlegm, two of the most common symptoms of the COPD, were assessed among participants of the COPD Foundation’s Patient-Powered Research Network (COPD PPRN). In addition, association between patient-reported levels of phlegm and cough, clinical outcomes and patients’ quality of life were evaluated. Participants’ quality of life was assessed using Patient Reported Outcome Measurement Information System instrument PROMIS-29. Association between changes in symptom severity over time and patient-reported quality of life were examined. Findings of this study indicated that severity of cough and phlegm were associated with higher number of exacerbations, greater dyspnea, and worsened patient-reported quality of life including physical and social functioning. Improvement in cough and phlegm severity over time was associated with better patient-reported quality of life. Third pulmonary illness described in this dissertation is non-cystic fibrosis bronchiectasis (NCFB), a rare and etiologically diverse condition characterized by dilated bronchi, poor mucus clearance and susceptibility to bacterial infection. Association between presence of Pseudomonas aeruginosa (PA), one of the most frequently isolated pathogens in patients with NCFFB, and disease severity was assessed utilizing enrollment data from the Bronchiectasis and NTM Research Registry (BRR). NCFB disease severity was evaluated using modified versions of validated in large international cohorts instruments, the Bronchiectasis Severity Index (BSI) and FACED. The findings of this study indicate that PA infection is common in NCFB patients, and presence of PA in patients’ sputum is associated with having moderate and high severity of bronchiectasis. In addition, the results of this study suggest that the two severity assessment instruments classify patients with NCFB differently which may be attributed to a greater number of severity markers utilized in the calculation of the BSI compared to FACED. In conclusion, the proposed dissertation aims to enhance understanding of differences in health outcomes between genotypes of AATD within AlphaNet registry, and to guide future health-promoting behaviors. It highlights the burden of common symptoms such as cough and phlegm in patients with COPD within COPD PPRN and their association with patients’ quality of life. In addition, it introduces modified indices of NCFB severity and emphasizes high burden of the disease in patients with presence of PA within the US BRR.

Background: Health-Related Quality of Life (HRQOL) can be negatively affected in patients living with arrhythmias and many patients experience a pronounced symptom burden. The arrhythmia can cause both uncertainty and limitations, including interference with work, reluctance to perform and plan for leisure activities and leading to self-imposed restrictions in daily life situations. There are patients striving to find strategies to manage the arrhythmia and for some this can become the focus in their lives. Treatment options are often a choice between pharmaceuticals and radiofrequency ablation (RFA) where RFA is an option for many arrhythmia-patients to be cured. In the care of arrhythmia-patients it is of great importance to combine objective examinations with patient-reported outcomes (PROs) to achieve patient’s own experiences of treatment efficacy and arrhythmias interference in daily life situations. Aims: The overall aims of this thesis were to assess symptom burden and HRQOL in patients with arrhythmias and to develop and validate an arrhythmia-specific questionnaire, suitable for most arrhythmia-patients. Design and Methods: Studies I and II were single-centre studies including patients referred for RFA, with two different arrhythmia diagnoses. Assessments of patient-reported outcomes (PROs) concerning HRQOL were performed using two questionnaires, SF-36 and EQ-5D (I-II). Further, patients were asked some disease-specific questions (I). Study I describes assessments before the RFA treatment and Study II the follow-up assessments at three and twelve months after RFA. Patients’ scoring of HRQOL was compared to age and gender matched reference groups before and after RFA (I-II). Studies III and IV describe the development and validation of a disease-specific questionnaire ASTA (Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia) assessing symptom burden and HRQOL. Studies III and IV were multicentre studies. Patients planned for DC-conversion, AF patients seeking emergency care and those with different forms of arrhythmias referred for RFA were included. Results: Patients scored significantly lower HRQOL in seven of SF-36’s eight scales compared to the age and gender matched reference groups before RFA treatment. Frequent arrhythmia attacks had a great negative impact on HRQOL, and female gender and older age were factors contributing to worse HRQOL (I). Treatment with RFA restored the patients’ HRQOL. Most positive effects were seen at three months follow-up. One year after treatment patients and the matched reference group scored their HRQOL to a similar level, assessed with SF-36 and EQ-5D index (II). The validated ASTA questionnaire was found to have good psychometric properties. Construct validity was confirmed with sufficient levels of item-total correlations in the ASTA symptom burden scale and HRQOL scales. The dimensionality of the ASTA HRQOL scale was established with confirmatory factor analysis, supporting a physical and a mental subscale. The internal consistency, demonstrated with Cronbach’s alpha (α), was satisfactory for the ASTA symptom burden scale and the ASTA HRQOL scales, varying from α 0.79 to α 0.91 (III-IV). Conclusions and clinical implications: The studies in this thesis confirmed how negatively affected the arrhythmia-patients can be with a pronounced symptom burden and impaired HRQOL. Treatment with RFA was demonstrated to restore the patients HRQOL to an equal level of that of the matched reference group. PROs are important to take into consideration in the care of arrhythmia-patients, to achieve the patients’ subjective experiences of their daily life situation. To the best of our knowledge ASTA is the first arrhythmia-specific questionnaire assessing symptom burden and HRQOL, suitable for most arrhythmia forms. The newly validated ASTA questionnaire can be an important contribution to assessment of PROs in arrhythmia-patients.

Dialysis patients are often denied hospice benefits unless they forego dialysis treatments. However, many of those patients might benefit from as-needed dialysis treatments to palliate symptoms of uremia, fluid overload, etc. The current Medicare payment system precludes this "palliative dialysis" except in those few cases where the terminal diagnosis is unrelated to renal failure. As approximately three quarters of all US patients on dialysis have Medicare as their primary insurance, a of review of Medicare policy is suggested, with a goal of creating a new "palliative dialysis" category that would allow patients to receive treatments on a less regular schedule without affecting the quality statistics of the dialysis center.

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Aim: The aim of the study was to investigate the degree of adherence and non-adherence to treatment regimen in the population with heart failure, as well as to explore relationships to symptom burden and hospitalization-frequency. Introduction: Heart failure – a chronic disease with a somber prognosis and high mortality, incidence and prevalence increasing world-wide. Adherence to treatment regimen mitigates symptom flare-up, increases life quality and impedes hospitalizations. Non-adherence is a global problem, historically underestimated and difficult to measure. The level of non-adherence to medical treatment in the heart failure-population is about 50 %, degree of non-adherence from a wider perspective implicates a gap of knowledge. Methods: A cross-sectional survey-study was conducted via the electronic survey: ”Living with heart failure”. Selection was consecutive, based on patients visiting the Cardiac outpatient-clinic, in a Swedish University Hospital. Data was transferred to descriptive statistics using the statistical processing program SPSS. Results: 479 individuals participated, non-adherent were 73,6 % and adherent 26,4 %. There was a significant difference between symptom burden among the non-adherent and the adherent. A trend also appeared between low hospitalization-frequency, high degree of adherence and low symptom burden, an equivalent trend among the most frequently hospitalized which exhibited the lowest degree of adherence and the most severe symptom burden. Conclusion: The results pinpoint the need to further draw attention to non-adherence, repeatedly representing the majority of the population. With a patient-centered approach nurses/caregivers could have an empowering effect on the patient´s ability to health literacy and thus promote conditions for adherence.