Towards understanding patients’ and caregivers’ assessments of symptoms and quality of life in lung cancer

Abstract: Lung cancer is associated with a wide range of symptoms arising from both disease progression and treatment side effects. Nurses caring for patients with lung cancer are thus challenged to help patients cope with a variety of problems. Individual perspectives, influences and experiences are of great importance to consider when interpreting patients and caregivers assessments of symptoms and quality of life. The overall aim of this thesis is to gain better understanding of different aspects influencing assessments of patients symptom experiences and quality of life by patients with inoperable lung cancer and their professional and family caregivers. The focus is on perspectives, symptom characteristics, changes in patients internal standards and prioritizations over time, and measurement approaches. The specific aims are to 1) explore whether there may be discrepancies between patients and their professional and family caregivers assessments of symptom occurrence and symptom distress, 2) examine changes in internal standards of measurement in patients regarding physical function, fatigue and overall quality of life, 3) examine changes over time and in retrospect in what patients spontaneously report as most distressing, 4) examine to what extent a standardized cancer-specific questionnaire assesses those concerns patients spontaneously reported as most distressing and 5) examine relationships between symptom occurrence, intensity and distress. The database for the four papers included in this thesis is comprised of prospective and retrospective symptom and quality of life assessments from sub-sets of patients participating in a longitudinal descriptive study of 400 patients diagnosed with inoperable lung cancer during the first year postdiagnosis. The relationship between symptom occurrence and symptom distress was studied in different ways, with all approaches confirming that they are separate components of patients symptom experiences. Patients and caregivers dyadic assessments of patient s symptom experience show that patients and caregivers were able to separate these two components although caregivers assigned most symptoms higher levels of intensity than patients themselves did. A symptom s association with distress was neither consistently related to its current occurrence, nor to whether high intensity levels were reported for that symptom. Patients spontaneous reports of a wide variety of concerns perceived as currently causing most distress changed over time and in retrospect. The cancer-specific questionnaire did not always adequately assess patients priorities, changes over time, or the content and intensity of concerns reported as most distressing, Decisive support to demonstrate that changes in patients internal standards of measurement influenced their assessments of symptom experience and quality of life during the first six months following diagnosis was not found. In summary, findings stress the importance of considering perspectives, symptom characteristics, patients priorities and adaptive processes, as well as measurement approaches when planning for symptom interventions to prevent or alleviate problems for the individual patient.