A systematic review of literature to evaluate the burden of physical and psychological symptoms and palliative care in patients diagnosed with idiopathic pulmonary fibrosis

BACKGROUND: Palliative care improves quality of life in patients with life-threatening illnesses, such as idiopathic pulmonary fibrosis (IPF), in a holistic manner and should be integrated early into the management of these patients. OBJECTIVE: To evaluate the degree of physical and psychological symptoms in patients with IPF and the extent to which palliative care is used in patient management. METHODS: Several databases were searched for studies reporting on symptom burden, quality of life or palliative interventions in patients with IPF. RESULTS: A total of 46 articles were included in this review. Studies showed that many patients experienced dyspnoea, which improved with pulmonary rehabilitation in some cases. Fatigue and poor quality of sleep had a notable negative impact on daily life activities. Instruments evaluating anxiety and depression showed that many patients with IPF experienced mild to moderate depression and anxiety. Quality of life was shown to be negatively affected across all domains. Two studies indicated poor referral to palliative care units and one study reported positively on the use of morphine for managing breathlessness in advanced IPF. CONCLUSION: Patients with IPF generally experience poor quality of life. Patients are seldom referred to palliative care, even in developed countries. No data were available on the use of palliative care in developing countries. Furthermore, research on the burden of symptoms and management of these symptoms appears to be limited. Increased awareness of and research on the palliative care needs of patients with IPF are recommended, particularly in resource-limited settings such as South Africa.