The evolution of Patient Reported Outcomes (PROs), has made an essential impact on patient-centered symptom management. PROs enable us to measure the patient‘s feels about their symptoms during treatment. ePROs (electronic PROs) are interfaces that allow a patient or health care provider to manage symptoms using an application such as mobile computing applications. The growth of mobile technologies in the healthcare sector has enabled us to take advantage of features like data manipulation, portability and standardization enable a better patient-driven symptom management. The Pan-Canadian Oncology Symptom Triage and Remote Support (COSTaRS) is a paper-based symptom management guideline designated for nurses. The objective of COSTaRS is to help and improve the decision-making process and create a consistent symptom management reporting system. Although this tool introduces numerous advantages in cancer symptom management, it also induces a number of issues for patients due to being overwhelming. Moreover, a noticeable portion of drawbacks originates from the paper-based nature of COSTaRS. In addition, cancer care symptom management mobile applications do not offer proper evidence-based centered symptom management system to the users. The purpose of this study is to design and developed the mobile version of COSTaRS for patients and caregivers. We identify problems with the current paper-based structure and related academic and non-academic works and then, we design and evaluate a mobile version of COSTaRS that takes advantage of advances in mobile technology. We leverage COSTaRS knowledge to create a mobile application for symptom management. We create an evidence-based platform for cancer treatment-related symptom management. A usability testing has been conducted for evaluation of the COSTaRS mobile application. The results of this study verify the usability of COSTaRS mobile application.

Bakgrund: Hjärtsvikt är en vanlig förekommande sjukdom, framförallt bland äldre. Sjukdomen klassificeras utifrån New York Heart Associaton Functional Classification (NYHA) och kan behandlas via ett flertal olika behandlingsregimer. Personcentrerad vård är av vikt för att skapa en förutsättning för en god vård och framhäva individens värde. Sjuksköterskor och anhöriga utgör en viktig del i vården av personer med hjärtsvikt. Syfte: Att beskriva hur personer över 18 år erfar att leva med sjukdomen hjärtsvikt. Metod: En litteraturöversikt som är baserad på 15 vetenskapliga kvalitativa artiklar. Resultat: Personer upplever att hjärtsvikt leder till svåra symptom som dyspné och fatigue. Dyspné är i många fall svårt att härleda till hjärtsvikt och är en källa till oro och ångest. Fatigue upplevs som fysisk trötthet som leder till en känsla av hopplöshet. Fatigue erfars leda till att omgivningen missförstår personers fysiska kapacitet. Hjärtsvikt upplevs också leda till fysiska begräsningar som påverkar dagliga aktiviteter och livsstilsaktiviteter. Vilket leder till en känsla av begränsning, dålig självbild, nedsatt livskvalité och ensamhet. Konklusion: Hjärtsvikt påverkar personer på flertalet olika plan. Personer upplever att hjärtsvikt leder till svåra symptom i form av dyspné och fatigue. Sjukdomen begränsar även deras liv i förhållande till dagliga aktiviteter samt livsstilsaktiviteter. / Background: Heart failure is a common illness, especially among elderly people. The illness is classified using the New York Heart Association Functional Classification (NYHA) and is treated using a variety of different treatment regimes. Person centered care is important to facilitate high standard care and promote the intrinsic value of the individual. Nurses and relatives play an important role in caring for people with heart failure. Aim: To describe how people over 18 years of age experience living with heart failure. Method: A review of the literature based on 15 scientific articles. Results: People experience fatigue and breathlessness as the most prominent symptoms. Breathlessness is in many cases initially difficult to attribute to heart failure and is a source of anxiety. Fatigue is experienced as a physical tiredness that leads to feelings of hopelessness. People feel misunderstood by people around them on how much fatigue affects their daily lives. Heart failure leads to physical limitations and affects daily activities negatively. This leads to feelings of limitations, poor self-image, reduced quality of live and loneliness. Conclusion: Heart failure affects people on many different levels. People experience breathlessness and fatigue to be the more difficult symptoms of heart failure and it being limiting on daily activities.

The National Institutes of Health recommends the development of conceptual models to increase rigor and improve evaluation in research. Validated models are essential to guide conceptualizations of phenomena, selection of variables and development of testable hypotheses. Structural equation modeling (SEM) is a methodology useful in model testing due to its ability to account for measurement error and test latent variables. The purpose of this study was to test a model of The Geriatric Cancer Experience in End of Life as adapted from Emanuel and Emanuel's framework for a good death using SEM. It was hypothesized that the model was a five-factor structure composed of clinical status, physical, psychological, spiritual and quality of life domains and that quality of life is dependent on the other factors. The sample was comprised of 403 hospice homecare patients. Fifty six percent were male, 97% were white with a mean age of 77.7. Testing of the model used AMOS statistical software. The initial five-factor model was rejected when fit indices showed mis-specification. A three-factor model with quality of life as an outcome variable showed that 67% of the variability in quality of life is explained by the person's symptom experience and spiritual experience. As the number of symptoms and the associated severity and distress increase, the person's quality of life significantly decreases (ß -0.8). As the spiritual experience increases (the expressed need for inspiration, spiritual activities, and religion) the person's quality of life significantly increases (ß 0.2). This is significant to nursing because the model provides a useful guide for understanding the relationships between symptoms, spiritual needs, and quality of life in end of life geriatric cancer patients and suggests variables and hypotheses for research. This study provides evidence for a strong need for symptom assessment and spiritual assessment, development of plans of care inclusive of symptom control and spiritual care, and implementation and evaluation of those plans utilizing quality of life as an indicator for the outcome of care provided by nurses.

The problem of this study addresses a preliminary Rasch rating scale analysis of the Brief Symptom Inventory in relation to reliability and validity. Also, this investigator will utilize information provided by the latent trait psychometric model.

Indiana University-Purdue University Indianapolis (IUPUI) / Symptom management is the main focus of care for patients living with advanced pancreatic cancer (APC). However, evidence shows that symptom management is far from satisfactory for this population. Poorly managed symptoms have had a profound negative impact on APC patients’ and caregivers’ life. While communicating symptoms with healthcare providers is the first step to achieve effective symptom management, some studies have revealed the poor quality of symptom discussions among cancer patients, their caregivers, and healthcare providers. The purpose of this dissertation was to advance the sciences of nursing, symptom management, and patient/caregiver and provider communication in patients with APC. Chapter two, three, and four represented three sub-studies which addressed three specific aims: (1) synthesizing the current evidence regarding the symptom experience of patients with APC, (2) examining recorded healthcare encounters between patients with APC, their caregivers, and healthcare providers to better understand the symptom experiences of patients with APC as told to their healthcare providers, and (3) developing a typology describing patterns and essential elements of real discussions between APC patients/ caregivers and healthcare providers in regards to symptoms. Specifically, chapter two was an integrative review which synthesized sixteen quantitative studies (n=1630 pancreatic cancer patients) and found that pain, fatigue, and appetite loss were primary and intense symptoms experienced by patients with APC. Chapter three was a qualitative descriptive study which used content analysis to examine 37 transcripts of APC patient/caregiver-provider health encounters originally collected for a larger communication study. This study identified ten major symptom groups often described as intense, distressing, and negatively impacting their quality of life. For chapter four, thematic analysis was used to examine 37 transcripts of APC/giver and provider interactions to develop a typology to describe patterns of interactions in regards to symptoms and symptom management. Eight common patient/caregiver-provider interaction patterns regarding symptoms and symptom management were identified. These typologies can be used to enhance patient/caregiver and provider communication programs to promote patient-centered care and improve symptom management in patients with APC. Findings overall will contribute to effective symptom management as it will deepen our understanding of symptom experience and communication processes. / 2 years

This thesis explored symptom clusters in patients with lung cancer before, during and after oncological treatment. A literature review and an interview study was used to explore the symptom cluster experience from the patients’ perspective. A large diversity of symptom cluster constellations were identified, in which fatigue was the most commonly occurring symptom, followed by dyspnea, pain, depression, cough and nutritional impact symptoms. Many symptom assessment instruments were identified, measuring mostly the intensity-dimension alone or in combination with timing. The results also stress that living with symptom clusters during treatment is more about survival than actually living. Patients’ symptom management strategies were shaped by impacting conditions such as knowledge and earlier experience of symptoms. Symptoms were often regarded as unavoidable by the patients and something to accept. How symptoms were recognized by health care professionals further added to the normalization of symptom clusters. Subsequently, patients would not always ask for support, and their quality of life was negatively affected. Holistic person-centered care including multi-dimensional symptom assessment is considered essential to ensure adequate symptom cluster management for patients with lung cancer.

The principal aim of this thesis was to further understanding of the factors influencing decisions to seek treatment for Major Depressive Disorder. A review of the literature (Chapter 2) revealed a number of factors associated with help-seeking for mental health disorders. However, there was no existing theoretical model of decisions to seek treatment for MDD, and there was limited understanding of the psychological and emotional processes involved in seeking treatment for depressive symptoms. In Study 1 (Chapter 3), a qualitative study explored participants’ accounts of seeking treatment for MDD, which resulted in the development of a theoretical model of help-seeking. This model highlighted the role of identity and goals in decisions to seek treatment for MDD. Subsequent studies in this thesis sought to test predictions made by this model. Study 2 (Chapter 4) explored the relationship between identity and goal conflict and depressed individuals’ acknowledgement of depressive symptoms and perceived need for treatment. Findings of this study suggested that greater identity conflict, but not goal, conflict was associated with reduced acknowledgement of depressive symptoms and less perceived need for treatment. Study 3 (Chapter 5) sought to replicate this relationship, and also tested the extent to which identity as a depressed person and socio-cognitive models of health behaviour could predict (i) intentions to seek treatment for depression and (ii) current treatment seeking. This study found that identity conflict was associated with reduced acknowledgement of depressive symptoms, but failed to replicate the relationship between identity conflict and perceived need for treatment for depression. However, greater identity as a depressed person was associated with both current treatment seeking and greater intentions to seek help. Analyses demonstrated that the Theory of Planned Behaviour and the Health Belief Model predicted current help-seeking and help-seeking intentions, but identity as a depressed person explained an additional significant proportion of the variance. A unified model, drawing on these two theories and incorporating identity was found to be the best fit in accounting for intentions to seek help for depression. The findings of Study 4 (Chapter 6) demonstrated that identity as a depressed person was also a significant predictor of prospective help-seeking behaviour for MDD. In this study, the majority of factors from the Theory of Planned Behaviour and Health Belief Model, extended to include identity, predicted help-seeking behaviour indirectly via intentions to seek help. However, intentions to seek help only predicted a small proportion of the variance in help-seeking behaviour, and the findings revealed that a subsample of factors, including identity, directly predicted help-seeking behaviour. The final study sought to use an online focus group to develop a measure of symptom avoidance in depressed individuals. This study faced methodological difficulties, and Chapter 7 reflects on the use of online focus groups to explore patient experiences of illness. The findings of this study highlighted participant experiences of using an online focus group method to discuss personal experiences of MDD, and this chapter provides specific guidance for other researchers planning to use this method in the context of health research. The implications of the findings of this thesis are discussed in Chapter 8, alongside recommendations for future help-seeking research.

Forskning visar att unga kvinnor idag är den grupp som löper störst risk att utsättas för ett negativt bemötande när de söker vård. Detta påverkas utifrån tre faktorer, kön, ålder och symptombild. Kvinnan underprioriteras i forskningsstudier möts av långa vårdköer, kortare rehabiliteringstider och billigare mediciner. Vårdpersonalen bidrar till att skapa och reproducera bilden om den ”värkande kvinnan”. Kvinnors smärta normaliseras vilket leder till att det blir en normal uppfattning att kvinnor har ont. Kvinnor förväntas därför klara av att hantera sin smärta, ofta samtidigt som hon förväntas uppfylla samhällets andra kvinnoideal.

Patients with heart failure (HF) must monitor and recognize escalating symptoms to manage worsening HF in a timely manner. However, routine symptom monitoring is not commonly performed by this population. Providing a symptom diary along with an education and counseling session may help HF patients promote symptom monitoring and interpretation. The accumulated information about changes in daily symptoms will allow patients to easily compare current symptom status to the past without depending on memory and can rapidly capture worsening HF. To date, few studies have tested the effect of a daily symptom diary. The purpose of this dissertation was to develop and test a symptom diary intervention to improve outcomes in HF patients. Prior to testing the intervention, preliminary work included: (1) determining the impact of symptom clusters on cardiac event-free survival; (2) evaluating the quality of existing symptom measures designed for HF patients; (3) evaluating the effect of physical symptom items that were often included in a depressive symptom instrument on cardiac event-free survival; and (4) evaluating the association between symptom monitoring and self-care management. Based on this information, a randomized, controlled pilot study was conducted to test the effect of a symptom diary with an education and counseling intervention on prognosis, healthrelated quality of life (HRQOL), and self-care maintenance at 3 months follow-up. A total of 44 hospitalized patients with HF were randomly assigned to either usual care or intervention providing a daily symptom diary with education and counseling. There were trends toward fewer HF events and improved self-care maintenance in the intervention group compared to the usual care group. However, there was no difference in HRQOL between the two groups. The results of this dissertation suggest the importance of assessing symptom clusters and further studies to improve the quality of existing HF symptom measures. Results from this dissertation also provided the evidence of the advantages of regular symptom monitoring to facilitate early identification of worsening HF and initiation of timely responses. However, further studies are needed to provide additional evidence of the positive impact of a use of daily symptom diary in patients with HF.

The objective of this pilot study was to examine the feasibility of using Bowenwork as a complementary intervention for symptom management of breast cancer treatment-related lymphedema in women breast cancer survivors. The aims of the investigation were to 1) determine recruitment and retention rates 2) determine adherence to the intervention, 3) assess the safety and comfort level of the intervention 4) describe the effects of the six week intervention on lymphedema symptoms. A quasi-experimental, repeated measure design was chosen for this pilot study. Twenty-one community-dwelling women breast cancer survivors were recruited from three cities in Arizona, United States. The intervention was delivered in four consecutive sessions five to ten days apart. Baseline and post-intervention questionnaires were completed by the participants. Quality of life was measured with the SF-36 and the FACT-B questionnaires. The FACT-B was also used to measure functional status. Pain was measured with the Brief Pain Inventory. A paired t-test analysis was performed on the baseline and post intervention data. An ANOVA was performed on repeated physical measures (arm circumference and range of motion).Ninety-five percent of the women who enrolled completed the study. Adherence to the intervention and home exercises was high, at 100% and 95% respectively. The intervention was evaluated as safe without any reported major changes in medical condition or level of discomfort that required discontinuation from the study. A paired t-test analysis on the scores from SF-36 (mental health) and the FACT-B (quality of life and functional status) improved significantly following the Bowenwork intervention (p<.05). An ANOVA revealed a statistical significantly improvement in arm circumference and range of motion (p<.05).Bowenwork was shown to be an effective management strategy that improved mental health, increased quality of life and daily functional status, in addition to reducing arm circumference and increasing range of motion in women breast cancer survivors with lymphedema. A future full-scale study is needed to further explore these findings.