Fig. 1

Information needs of patients with interstitial lung disease and their families. The top five information needs of patients with interstitial lung disease were “disease progression and what to expect,” “how to manage breathlessness, cough, and fatigue,” “acute exacerbation of ILD,” “when and where to contact healthcare providers,” and “end-of-life care and advance directives.” The top five information needs of the family were “Disease progression and what to expect,” “Acute exacerbation of ILD,” “How to manage breathlessness, cough, and fatigue,” “Diet and nutrition,” and “Care and support at home.” ILD, interstitial lung disease. Information need number (INF) 1, 2, 4, 6, 12, 13, 15, 16, 18, 19, 20, 23 (Patient, n = 53; Family, n = 60), INF 7, 8, 11 (Patient, n = 53; Family, n = 61), INF 5 (Patient, n = 53; Family, n = 62), INF 3, 10 (Patient, n = 54; Family, n = 60), INF 22 (Patient, n = 55; Family, n = 60), INF 14, 17 (Patient, n = 55; Family, n = 61), INF 9 (Patient, n = 56; Family, n = 61), INF 21 (Patient, n = 57; Family, n = 60)