Introduction: Nurses and other health care professionals meet patients with heart failure (HF) who report they are thirsty. Thirst is described by the patients as a concern, and it is distressing. Currently there are no standardized procedures to identify patients with increased thirst or to help a patient to manage troublesome thirst and research in the area of thirst is scarce. In order to prevent and relieve troublesome thirst more knowledge is needed on how thirst is experienced and what factors cause increased thirst. Aim: The aim of this thesis was to describe the thirst experience of patients with HF and describe the relationship of thirst with physiologic, psychologic and situational factors. The goal was to contribute to the improvement of the care by identifying needs and possible approaches to prevent and relieve thirst in patients with HF. Methods: The studies in this thesis used a cross-sectional design (Study I) and prospective observational designs (II-IV). Studies include data from patients with HF who were admitted to the emergency department for deterioration in HF (I, IV) or visited an outpatient HF clinic for worsening of HF symptoms (III); others were patients who were following up after HF hospitalization (II), and patients with no HF diagnosis who sought care at the emergency department for other illness (I). Patients completed questionnaires on thirst intensity, thirst distress, HF self-care behaviour, feeling depressive and feeling anxious. Data on sociodemographic, clinical characteristics, pharmacological treatment and prescribed fluid restriction were retrieved from hospital medical records and by asking the patients. Data were also collected from blood, urine and saliva samples to measure biological markers of dehydration, HF severity and stress. Results: Thirst was prevalent in 1 out of 5 patients (II) and 63% of patients with worsening of HF symptoms experienced moderate to severe thirst distress at hospital admission (IV). Patients at an outpatient HF clinic who reported thirst at the first visit were more often thirsty at the follow-up visits compared to patients who did not report thirst at the first visit (II). Thirst intensity was significantly higher in patients hospitalized with decompensated HF compared to patients with no HF (median 75 vs. 25 mm, visual analogue scale [VAS] 0-100 mm; P < 0.001) (I). During optimization of pharmacological treatment of HF, thirst intensity increased in 67% of the patients. Thirst intensity increased significantly more in patients in the high thirst intensity group compared to patients in the low thirst intensity group (median +18 mm vs. -3 mm; P < 0.001) (III). Patients who were admitted to the hospital with high thirst distress continued to have high thirst distress over time (IV). A large number of patients were bothered by thirst and feeling dry in the mouth when they were thirsty (III, IV). Patients with a fluid restriction had high thirst distress over time and patients who were feeling depressed had high thirst intensity over time (IV). Thirst was associated with fluid restriction (III-IV), a higher serum urea (IIIII), and depressive symptoms (II). Conclusions: A considerable amount of patients with HF experiences thirst intensity and thirst distress. Patients who reported thirst at the first follow-up more often had thirst at the subsequent follow-ups. The most important factors related to thirst intensity or thirst distress were a fluid restriction, a higher plasma urea, and depressive symptoms. Nurses should ask patients with HF if they are thirsty and measure the thirst intensity and thirst distress, and ask if thirst is bothering them. Each patient should be critically evaluated if a fluid restriction really is needed, if the patient might be dehydrated or needs to be treated for depression.

Bakgrund:  Symtomkontroll är en viktig del i den palliativa vården. Sjuksköterskan har en central roll i denna vård. Fokus inom tidigare forskning har legat på smärthantering och därför gjordes denna litteraturöversikt som belyser vikten av hantering av illamående i palliativ vård.  Syfte: Att undersöka förekomsten av illamående hos palliativa patienter samt sammanställa sjuksköterskans kunskap kring hantering av dessa patienters illamående inom hälso- och sjukvård.  Metod: Litteraturöversikt som inkluderar 16 artiklar.  Resultat: Förekomsten av illamående hos palliativa patienter i litteraturöversikten var mellan 7-40 %. Resultatet visar att sjuksköterskor tycker att de har god kunskap för att kunna symtomskatta, behandla och utvärdera behandling av illamående i palliativ vård. Det visade även en skillnad av sjuksköterskors upplevda kunskap kring palliativ vård beroende på arbetslivserfarenhet.  Det framkom i resultatet att symtomskattning inte alltid utfördes och att validerade skattningsinstrument för illamående inte alltid användes. En del palliativa patienter är medicinskt underbehandlade och utvärdering av behandling av illamående förekom inte alltid hos palliativa patienter i hälso- och sjukvården. Resultatet visade även på skillnader i hantering av illamående utifrån kön och ålder.  Konklusion: Sjuksköterskorna hade mer kunskap om symtomhantering desto mer erfarenhet de hade. Det behövs mer utbildning för att hantera illamående, både på grundnivå inom sjuksköterskeprogrammet men även fortsatt utbildning på arbetsplatserna. Det behövs mer forskning inom detta för att identifiera mer exakt vilken kunskap sjuksköterskor saknar. Det behövs även mer forskning för att undersöka hur sjuksköterskan fastställer illamåendets orsak. / Background: Symptom management is an important part in palliative care. Nurses have a central role in this care. Previous research highlights pain management, this literature review aims to shed light on the importance of nausea management in palliative care.  Aim: To examine the prevalence of nausea in palliative patients and to compile nurses’ knowledge about management of these patient’s nausea in healthcare.  Method: A literature review based on 16 articles.  Result: Prevalence of nausea in palliative patients in the literature review was between 7-40%. The result shows that nurses rate their knowledge high when it comes to symptom estimation, treating symptoms and evaluate treatment of nausea in palliative care. Nurses knowledge of palliative care differed depending on their work experience. It also showed that symptom estimation doesn’t always occur and validated tools to estimate nausea are not always used. Some palliative care patients are medically undertreated for nausea and evaluation of nausea-treatment isn’t always done. The result also showed discrepancies of treatment between gender and age.  Conclusion: Nurses’ had more knowledge about symptom management the more work experience they had. There is a need for further education in how to manage nausea both in nursing school and at the workplace. Additional research is needed to identify exactly what knowledge nurses’ lack. There is also a need for research that examines how nurses determines the cause of nausea.

Only one third of older breast cancer survivors (BCS) meet national physical activity (PA) guidelines. Theories of self-regulation and research with older adults suggest that executive function (EF) plays an important role in PA, yet the impact of lower EF on older survivors’ PA is unknown. My project addressed this gap using secondary data from the Thinking and Living with Cancer (TLC) cohort study, which examined cognitive function among older BCS pre-treatment, followed every 12 months, and contemporaneously assessed matched controls. My first aim was to test two hypotheses regarding EF change and PA and determine if these relationships differ between BCS and controls. My hypotheses were: 1) EF decline from baseline to 12 months will predict lower PA at 24 months, and 2) lower PA at 12 months will predict EF decline from 12 to 24 months. My second aim was to explore whether the effects of EF change on PA in BCS differed based on risk factors for accelerated cognitive decline (i.e., older age, more advanced cancer stage, comorbidity, and <i>APOE</i> ε4 genotype). The TLC study measured EF with neuropsychological tests and PA with the International Physical Activity Questionnaire-Short Form. For aims 1 and 2, I used multiple regression with multiple imputation. Primary results showed no significant effect of EF change from baseline to 12 months on PA at 24 months (β=-0.01, p=0.88) and no significant group (BCS vs. controls) by EF interaction (β=-0.05, p=0.33). Separate models in BCS and controls showed similar findings. In the entire sample, PA at 12 months significantly predicted EF change from 12 to 24 months (β=0.17, p=0.01), but there was no significant group by PA interaction (β=-0.06, p=0.54). Separate analyses by group found a significant effect of PA for controls (β=0.07, p=0.02), but not for BCS (β=0.05, p=0.27). Regarding the second aim, there were no significant interactions between EF change and the proposed risk factors on PA. Findings were largely inconsistent with theory and prior research. Continued research in this area will inform future exercise interventions to improve physical and cognitive health for the growing population of older cancer survivors.

An estimated 14 million people in the United States currently have chronic obstructive pulmonary disease (COPD). This nonreversible illness causes progressively decreasing airflow and is manifested by frequent episodes of acute and chronic dyspnea. The purposes of this study were: 1) to examine the relationships between mastery (MS), negative affectivity trait (NA), perceptions of patient dyspnea severity (DSI), and perceptions of which dyspnea interventions are effective (DE) among family caregiver-COPD patient dyads and 2) to examine the degree of agreement between the dyad members regarding dyspnea assessment and management. The study subjects were elderly (patients = 71.6 years, caregivers = 63.4 years), mostly women (patients = 60%, caregivers = 63.3%), Caucasian (96.7%), and patients had severe/very severe COPD (80%). No significant differences were found between family caregivers' and patients' ratings of MS, NA, DSI, or DE. The most effective dyspnea management strategies identified by both dyad members included changing activity, relaxation, inhaled medication use, and altering breathing pattern. The study conceptual model was tested to identify the interrelationships between the study variables. Significant effects in the patient model were between DSI and NA (p = 0.04), DE and gender (p = 0.04), DE and education (p = 0.015), and between DE and disease severity (p = -0.026). The caregiver model demonstrated no significant effects between the study variables. Significant effects in the dyad model were between DSI and the length of time caregiving had been provided (LOT, mean = 25.2 years) (p = 0.013), DE and DSI (p = 0.004), and between DE and LOT (p = 0.03). Gender, education, disease severity, LOT, and DSI influenced DE. Negative affectivity and LOT (mean = 25.2 years) influenced DSI. The findings of this study indicate that when the family caregiver of a patient with COPD is present, he or she is able to provide valid and reliable assessments of the patient's dyspnea severity. During acute exacerbations of dyspnea, persons with COPD are often unable to speak for themselves and these experienced family caregivers may be valuable partners with nurses and other healthcare providers to represent the patient's responses and needs.

There is evidence of a relationship between pain and associated symptoms, specifically constipation and dyspnea, and quality of life. Literature supports that endstage lung cancer patients suffer more symptoms than those with other types of cancers, and the course of treatment is primarily palliative, as many of these diagnosed patients cannot be cured. The purpose of this secondary analysis of data was to evaluate the relationships between pain and other common symptoms in end stage lung cancer patients in hospice care, and the relationships among pain, dyspnea, constipation and quality of life. The study sample included fifty lung cancer patients admitted to a hospice program, reporting pain. A series of Pearson’s correlations were used to analyze relationships between the variables pain intensity, pain distress, dyspnea intensity, dyspnea distress, constipation intensity and the relationships of these variables with quality of life. The results showed positive significant correlations between pain intensity and pain distress (r = .44, p = .002), dyspnea intensity and dyspnea distress (r = .47, p = .001), and constipation intensity and quality of life (r = -.57, p = .013). Pain and the relief of pain have been studied extensively in cancer patients, yet little research has been done in the way of side effects of opioid use, specifically constipation. This study reinforces to vi nursing the importance of a thorough assessment upon admission to hospice, and at each subsequent nursing visit, which includes a bowel habit history, current medications in use, potential risk for developing constipation and management of constipation once it is present. Hospice patients with lung cancer are reporting a decrease in quality of life secondary to constipation. Prevention or rapid alleviation of this symptom will provide comfort and allow the patient to focus on important end of life tasks.

It has been well established that many people will suffer with pain at the end of life, and untreated pain contributes to reduced quality of life. Many barriers contribute to this issue including a lack of knowledge in nurses who care for dying patients. Many nurses in general practice settings do not possess adequate knowledge about basic pain management principles; and the same may be true about hospice nurses despite the assumption that hospice nurses are more adept at pain management. Contributing to this problem may be the attitudes that nurses, including hospice nurses, have regarding pain and its management. This study sought to identify the knowledge levels of hospice nurses. Because attitudes may affect the delivery of effective pain management, the study also sought to determine attitudes of hospice nurses regarding pain and its management. Thirty-five hospice nurses completed two instruments: The Pain Management Principles Assessment Test measured levels of knowledge and the Nurses Pain Management Attitude Survey determined attitudes. Data was analyzed using means, standard deviations, frequencies and percentages. A correlation between knowledge level and attitude was also calculated, along with a correlation between knowledge level and certification status. The overall mean knowledge score for the nurses studied was 21.74 (72.3%), which falls below accepted standards. The mean attitude score found was 82.34, which demonstrates only slightly positive attitudes. These findings support the idea that knowledge and attitude are not synonymous and that a nurse may have a positive attitude about the management of pain, without sufficient knowledge to effectively alleviate pain. It is often said that hospice nursing is a calling, and these are the nurses who are at the forefront of pain management. This study demonstrates that slightly more positive attitudes may indicate that this group of nurses is motivated to gain a better knowledge base. This should motivate hospices and other education institutions to incorporate more specific instruction regarding pain management into their curricula. Despite some common misconceptions pain does not have to be an unavoidable part of life, and with a better knowledge base hospice nurses could more effectively deliver compassionate, expert care.

Symptom research with advanced lung cancer patients has primarily focused on symptom severity, frequency, and distress; yet, little is known about advanced lung cancer patients’ priorities and success criteria for symptom improvement. To address these gaps in the literature, this study examined these outcomes using a modified Patient Centered Outcomes Questionnaire (PCOQ), which has largely been used with adults with chronic pain. Advanced lung cancer patients (<i>N</i> = 102) were recruited from the Indiana University Simon Cancer Center to participate in a one-time self-report survey, including demographic and medical questionnaires, symptom treatment history, standardized measures of symptom severity and quality of life, and the modified PCOQ focused on eight common symptoms in advanced lung cancer. Cancer information was collected from medical records. My primary aim was to evaluate the construct validity of the PCOQ. As hypothesized, symptom severity ratings on the PCOQ were positively correlated with standardized assessments of the same symptoms as well as functional status. Greater severity of most symptoms on the PCOQ was also correlated with worse quality of life, and greater severity of four symptoms was correlated with having more medical comorbidities. Positive, moderate correlations were found between the severity and importance of seeing improvement in cough, fatigue, sleep problems, and pain on the PCOQ. Patients considered low levels of symptom severity to be acceptable following symptom treatment; no differences were found across the eight symptoms. Latent profile analysis identified four patient subgroups based on the importance of seeing improvement in each of the symptoms: (1) those who rated all symptoms as low in importance (<i>n</i> = 12); (2) those who rated bronchial symptoms and sleep problems as low in importance and all other symptoms as moderately important (<i>n</i> = 29); (3) those who rated nausea and emotional distress as low in importance and all other symptoms as moderately important (<i>n</i> = 23); and (4) those who rated all symptoms as highly important (<i>n</i> = 33). These subgroups were unrelated to demographic and clinical factors, except for functional status. Findings suggest that symptom severity and importance are related yet distinct aspects of the advanced lung cancer symptom experience. Furthermore, patients have heterogeneous priorities for symptom management, which has implications for tailoring treatment.

Indiana University-Purdue University Indianapolis (IUPUI) / Taxane-induced musculoskeletal pain (TIMP) is musculoskeletal pain that includes myalgia (i.e., diffuse muscle pain, usually accompanied by malaise) and/or arthralgia (i.e., joint pain) that occurs following treatment with taxane-based chemotherapy. TIMP is a symptom that is clinically reported as negatively affecting most cancer survivors receiving taxane-based chemotherapy; however, TIMP is not comprehensively understood. The purpose of this dissertation was to conduct a cross sectional, descriptive, correlational pilot study to describe TIMP in women with ovarian cancer who were being or had been treated with paclitaxel-containing regimens. Specific aims were to: (1) describe the TIMP symptom experience (intensity, distress, duration, location, quality, temporal pattern, aggravating and alleviating factors, and pain management); (2) describe the associations between TIMP (intensity, distress) and co occurring symptoms (pain [general], peripheral neuropathy, impaired sleep, fatigue, emotional distress, and/or hot flashes); and (3) identify associations between TIMP (intensity, distress) and patient-reported outcomes (interference with daily activities, physical functioning, and health-related quality of life). Primary data collection was performed on a convenience sample of 15 women with ovarian cancer. Participants were recruited from an outpatient cancer clinic, local cancer support communities, and a national cancer survivors’ research registry. Descriptive statistics and Spearman’s correlations were used. Findings showed TIMP is moderate to severe in intensity on average, constant, affecting a large area of the body, and aggravated by everyday walking. Greater TIMP intensity or distress was associated with greater intensity and interference of most co-occurring symptoms and was associated with greater interference with daily activities, worse physical functioning, and worse health-related quality of life. Nurses are encouraged to comprehensively assess TIMP using structured, validated tools for pain to better intervene on aggravating and alleviating factors and pain management regimens. Prospective, longitudinal studies with larger sample sizes are needed to further understand TIMP and its impact on cancer survivors.

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

Indiana University-Purdue University Indianapolis (IUPUI) / Only one third of older breast cancer survivors (BCS) meet national physical activity (PA) guidelines. Theories of self-regulation and research with older adults suggest that executive function (EF) plays an important role in PA, yet the impact of lower EF on older survivors’ PA is unknown. My project addressed this gap using secondary data from the Thinking and Living with Cancer (TLC) cohort study, which examined cognitive function among older BCS pre-treatment, followed every 12 months, and contemporaneously assessed matched controls. My first aim was to test two hypotheses regarding EF change and PA and determine if these relationships differ between BCS and controls. My hypotheses were: 1) EF decline from baseline to 12 months will predict lower PA at 24 months, and 2) lower PA at 12 months will predict EF decline from 12 to 24 months. My second aim was to explore whether the effects of EF change on PA in BCS differed based on risk factors for accelerated cognitive decline (i.e., older age, more advanced cancer stage, comorbidity, and APOE ε4 genotype). The TLC study measured EF with neuropsychological tests and PA with the International Physical Activity Questionnaire-Short Form. For aims 1 and 2, I used multiple regression with multiple imputation. Primary results showed no significant effect of EF change from baseline to 12 months on PA at 24 months (β=-0.01, p=0.88) and no significant group (BCS vs. controls) by EF interaction (β=-0.05, p=0.33). Separate models in BCS and controls showed similar findings. In the entire sample, PA at 12 months significantly predicted EF change from 12 to 24 months (β=0.17, p=0.01), but there was no significant group by PA interaction (β=-0.06, p=0.54). Separate analyses by group found a significant effect of PA for controls (β=0.07, p=0.02), but not for BCS (β=0.05, p=0.27). Regarding the second aim, there were no significant interactions between EF change and the proposed risk factors on PA. Findings were largely inconsistent with theory and prior research. Continued research in this area will inform future exercise interventions to improve physical and cognitive health for the growing population of older cancer survivors.