Patient and caregiver shared experiences of pulmonary fibrosis (PF): a systematic literature review

Pulmonary Fibrosis (PF) describes a group of lung diseases, where progressive scarring (fibrosis) occurs. Symptoms worsen over time and include breathlessness, tiredness, and cough, giving rise to psychological distress. Significant morbidity accompanies PF, so ensuring these patients care needs are well defined and provided for represents an important treatment strategy.

The purpose of this systematic review was to synthesise what is currently known about the psychosocial morbidity, illness experience and needs of people with pulmonary fibrosis and their informal caregivers.

Eight databases (MEDLINE, EMBASE, PUBMED, Cochrane database of Systematic reviews (CDSR), Web of Science Social Sciences Citation Index, PsycINFO, PsycARTICLES and CINAHL) were used to identify studies exploring the supportive needs of adults with PF and / or their caregivers. Methodological quality was assessed using the Mixed Methods Appraisal Tool.

53 studies were included, the majority using qualitative methodology (79%, 42/53), 6 as part of mixed methodological studies. Supportive care needs were mapped to eight domains using an a priori framework analysis.

Findings highlight a lack of psychological support throughout the course of the illness, misconceptions about and barriers to the provision of palliative care despite its potential positive impacts, with a desire amongst patients and caregivers for greater disease specific education and information provision throughout the illness. Trials of complex interventions are needed to address the unique set of challenges for patients and carers living with PF.