Introduction Patients with interstitial lung disease (ILD) have a high symptom burden but their palliative care needs are not well reported. We hypothesised that there was an unmet need for social and palliative care input in ILD patients.
Methods 131 consecutive ILD clinic patients (September 2013–January 2013) completed a questionnaire unsupervised. 6 ILD patients on home oxygen completed the same questionnaire during a home visit. The questionnaire consisted of the 15 questions included in the King’s Brief Interstitial Lung Disease (K-BILD) health status questionnaire, concerning experiences in the preceding two weeks, and an additional 9 questions aimed at assessing patients’ perceptions of their needs and concerns.
Results Despite reporting significant physical symptoms in the questionnaire, including breathlessness in 69%, chest tightness in 52% and wheeze (60%), only 10% felt that their physical needs were not being met.
Emotional and psychological symptom reporting was high, including worry about the seriousness of their lung condition (54%), feeling “down” in 52% and anxiety in 43%. Only 32% felt in control of their lung condition, with 43% expecting to get worse and 39% thinking about the end of their life. 49% of patients worried about how their spouse or carer was coping with their condition. However, only 7% and 9% felt they needed more emotional or spiritual support respectively.
The majority of patients avoided doing things that made them breathless (64%) and felt that their lung condition interfered with their activities of daily living (60%) or limited them carrying things (43%) but only 13% felt they needed more practical help.
Most patients wanted to be involved in care decisions should they become unwell (81%, n = 110).
Conclusions ILD patients report significant physical and psychological symptoms, but there is a marked discrepancy between reported symptoms and the perceived need for additional support, including practical, emotional and spiritual support. The reason for this is unclear. It may relate to perceived lack of benefit of such services or to poor understanding of the questionnaire itself. Most patients wanted to be involved in care decisions if they become unwell, highlighting the importance of anticipatory care planning.