Background Idiopathic Pulmonary Fibrosis (IPF) and Non Specific Interstitial Pneumonia (NSIP) are Idiopathic Interstitial Lung Diseases (ILD) without a known cure. IPF is progressive and fatal. Management of Idiopathic ILD must address patients’ palliative and supportive care needs. The Sheffield Profile for Assessment and Referral to Care (SPARC©) questionnaire is a health needs assessment tool covering common biological, psychological and social needs. Local use of SPARC led to service refinements for thoracic cancer patients.
We now explore SPARC in patients with Idiopathic ILD to identify patients’ perceptions of disease burden.
Methods Patients within 18 months of an Idiopathic ILD diagnosis, identified through specialist clinics, were invited to complete a SPARC questionnaire as part of an ongoing multicentre clinical study. Patients were excluded if concerns existed regarding ability to consent.
SPARC questionnaires included 45 questions: four (concerning personal, communication and information issues) required “yes/ no” responses. 41 questions related to symptoms and issues which were rated by patients as to the degree of distress they’d caused in the preceding month. Ratings were 0 “not at all”, 1 “a little bit”, 2 “quite a bit” and 3 “very much”.
Responses were analysed using descriptive statistics. To highlight the most troubling issues, the percentage of patients reporting either “very much” or “quite a bit” of distress was identified for each question.
Results 97 patients with Idiopathic ILD (77 male) with median age 69 (range 47- 86) were included. 79 (81%) had IPF, 18 (19%) NSIP. 38 (39%) had severe lung function defects (TLCO <40%).
Table 1 shows the 20 most common issues reported to cause “quite a lot” or “very much” distress.
Conclusions and implications Symptoms causing highest levels of distress in the Idiopathic ILD group reflect the commonly observed 'fibrotic triad' of dyspnoea, fatigue and cough.
Surprisingly concerns with dry mouth, sleep and effect on sexual life were also in the ‘top 10’ of distressing issues: further investigation into these is suggested.
Utilisation of SPARC can highlight troublesome issues experienced by patients with Idiopathic Interstitial Lung Diseases. Addressing these concerns, which may have been otherwise unrecognised, can guide best supportive care.