The experience and communication of symptoms in advanced pancreatic cancer patients and their families

Abstract

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.