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.

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

Background: Liver cirrhosis is a global health problem and a national health problem in Egypt. There is a lack of literature on Health-Related Quality of Life (HRQOL) and symptoms experience of liver disease and cirrhotic patients in Middle East, particularly in Egypt. Aims: This PhD had three major aims: First aim: To describe HRQOL of Egyptian liver cirrhotic patients and to identify and evaluate the factors associated with (HRQOL) physical and mental health domains. Second aim: To explore and describe experienced symptoms (prevalence, severity and hindrance) in Egyptian cirrhotic patients and to identify and evaluate factors associated with symptoms severity and symptoms hindrance (distress). Third aim: To explore and describe how cirrhotic patients in Egypt perceive social support from spouse, family and friends and to identify and evaluate factors associated with general perceived social support. Method: A cross-sectional study with a convenience sample of 401 patients from three hospitals in Cairo, Egypt, was conducted between June and August 2011. Patients were interviewed to complete a background data sheet, Short Form-36v2 (SF-36), the Liver Disease Symptom Index (LDSI)-2.0 and the Multidimensional Scale of Perceived Social Support (MSPSS). Results: Findings for first aim: The findings showed that all domains and component summary scores [Physical component summary score (PCS) and mental component summary score (MCS)] of the generic SF-36 were below the norm (cut-off score 50), suggesting that patients with liver cirrhosis in Egypt have poor HRQOL. About 87.2% of the patients rated their general health as poor or fair, which means the majority of these patients have low perceived general health. Many socio-demographic and medial factors were shown to be significantly associated with perceived HRQOL. Women, illiterate and unemployed people, and patients with frequent hospitalisation had poor PCS and MCS, while patients with advanced disease stage, increasing number of comorbidities and complications and those admitted to inpatients had significantly poorer PCS only. Perceived social support from a spouse had a statistically significant positive association with PCS and MCS, while perceived social support from family and friends had a statistically significant positive association with MCS only. Also, severity and hindrance of symptoms significantly correlated with PCS and MCS. Using stepwise multiple linear regression analysis, two models were developed to identify factors associated with PCS (Model 1) and MCS (Model 2) health. Model 1 could significantly explain 19% of the variation in PCS (R2 = 0.190, R2adj = 0.180, p = 0.0005), and four factors (symptoms severity, disease stage, comorbidities and employment status) were significantly (p ≤ 0.02) associated with PCS. Model 2 could significantly explain 31.7% of the variation in MCS (R2 = 0.317, R2adj = 0.308, p = 0.0005), and four factors (symptoms severity, employment status, perceived spouse support and perceived family support) were associated (p ≤ 0.04) with MCS. The key findings of this study were that severity of symptoms and social support from spouse and family were associated with HRQOL. Where patients with high symptoms severity were likely to report poor PCS and MCS; and patients with low perceived social support were likely to report poor MCS. Symptoms severity contributed significantly in explaining 28.7% of the variation in PCS and 43.6% of the variation in MCS. Findings for second aim: This study found that the majority of patients had one or more of a wide range of symptoms and social problems. Two-thirds of patients reported joint pain (78.3%), decreased appetite (75.6%) and memory problems (77.3%). Joint pain and depression were reported to have the biggest impact on daily life. Symptoms severity and distress were significantly higher among patients who were: female, illiterate, unemployed, and who had advanced cirrhosis with more complications and comorbidities (p ≤ 0.006). Symptoms severity (r=-0.206) and symptoms distress (r=-0.205) were negatively associated with perceived social support (p=0.005). Stepwise regression analysis showed that the regression model could significantly explain 19.6% of the variation in symptoms severity (R2 = 0.196, R2adj = 0.180, p = 0.0005), and 14% of the variation in hindrance of symptoms (R2 = 0.140, R2adj = 0.132, p = 0.0005). Being female, having an increasing number of liver disease complications, and having low perceived support from spouse were significantly associated with high-perceived symptoms severity and hindrance (p≤0.01). Findings for third aim: This study found that social support score was relatively high among patients with cirrhosis in Egypt (total score mean of MSPSS was 2.02± standard deviation (0.537), while perceived support from spouse was the highest source of support. 67.5% of the patients felt their spouse is around when they need him/her and 71.7% of them share their joys and sorrows with their spouse. Likewise, 64.9% of married people feel their spouse cares about their feelings. In relation to the perception of adequacy of family support, it was observed that 52.6% felt that their families do not really try to help them. At the same time, 52.1% reported that they got the emotional help and support that they needed from their families. Regarding perceived support from friends, more than half of the patients reported that their friends do not really try to help them (57.9%), they cannot count on their friends when things go wrong (65.6%) and they cannot talk about their problems with their friends (56.4%). There was a significantly positive association between the perception of social support and general health perception (GHP), suggesting that when social support decreases GHP also decreases or and vice versa (r= 0.208, p = 0.0005). Stepwise regression analysis showed that the regression model could significantly explain 10.9% of the variation in perceived social support (R2 = 0.109, R2adj = 0.100, p = 0.0005). Marital status, gender, age and employment status were significantly associated with general perceived social support (p ≤ 0.01), while unmarried, females, unemployed and elderly cirrhotic patients were vulnerable groups that were likely to perceive low social support. Overall discussion and conclusion: This is the first study to investigate HRQOL, symptoms experience and perceived social support in patients with liver cirrhosis in Egypt. All aspects of HRQOL of Egyptian cirrhotic patients were poor, and they were experiencing various symptoms that can affect their daily life. However, social support was found to be related to perceived symptoms severity and perceived poor mental health. Hence, social support may alleviate suffering for certain cirrhotic patients. Nurses have a responsibility to assess and treat symptoms that cirrhotic patients experience, particularly such treatable symptoms as depression, pain and decreased appetite. Also, nurses should involve the patient’s family in any plan of care. Future intervention studies that aim to develop programs to relieve treatable symptoms and enhance social support are also recommended.