Differentiating between depression, anxiety and a grief reaction in idiopathic pulmonary fibrosis (IPF) patients and their caregivers. Is it time to rethink how and what we measure?

Rationale: IPF is a chronic, progressive and terminal lung disease with high symptom burden. As symptoms increase, health related quality of life is negatively impacted. Caregivers and loved ones are also affected by changing life roles. Past attempts to measure prevalence of depression and anxiety may not accurately reflect prevalence due to the language used in the scales and the way patients and caregivers perceive their emotional reaction and match it to the scales. We aim to accurately assess patient and caregiver emotional experience. Method: A specifically designed semi-structured clinical interview plus validated scales were used to investigate the prevalence of anticipatory grief, depression and anxiety in both IPF patients (n=31) and their caregivers (n=17). Results: 72% of IPF patients and 77% of caregivers reported that at time of diagnosis they experienced an emotional reaction consistent with grief. At time of interview, independent of lung function or disease progression, 58% of IPF patients and 82% of caregivers reported a grief response. Whereas, 13% (n=4) of IPF patients and 3% (n=1) of caregivers reported a diagnosis of anxiety. Depression was reported by 7% (n=2) of IPF patients and 3% (n=1) of caregivers. Only 13% (n=4) of IPF patients believed that their IPF diagnosis was responsible for their depression or anxiety diagnosis. Conclusion: Our results suggest that due to the fatigue, breathlessness and grief experienced by IPF patients and their caregivers, traditional depression and anxiety scales may not accurately reflect the true patient and caregiver experience.