Table 1

Patient-reported outcomes ranked by perceived importance by people >13 years affected by CF and carers of children

Rank	People with CF >13 years	Carers of children 0–18 years
1	Coughing up blood	Coughing up blood
2	Shortness of breath/difficulty breathing	Shortness of breath/difficulty breathing
3	Feeling fatigued/deconditioned	Presence of pain
4	Anxiety/worry	Feeling anxious/worried
5	Sputum production (presence of, or worsening from baseline)	Feeling sad/depressed
6	Sadness/depressed mood	High treatment burden
7	Tiredness	Gastrointestinal (abdominal pain, diarrhoea, flatulence)
8	High treatment burden	Impaired hearing
9	Inability to cough/clear up sputum	Sputum production (presence of, or worsening from baseline)
10	Inability to meet personal/school/work goals	Poor appetite/eating difficulties
11	Feeling unwell	Chest tightness
12	Poor exercise tolerance	Lack of energy
13	Nausea/vomiting	Not feeling well
14	Coughing	Reduced exercise tolerance
15	Reduction of usual activities	Fever
16	Nausea/vomiting	Inability of child to meet personal/school/work goals
17	Difficulty sleeping	Poor weight
18	Presence of pain	Difficulty sleeping
19	Presence and severity of wheezing	Reduced ability to concentrate/think clearly
20	Being worried about your CF	Wheeze
21	Reduced ability to concentrate/thing clearly	Presence of sweats/chills
22	Chest tightness	Reduction of usual activities
23	Coughing	Amount of school/work missed by child
24	Gastrointestinal (diarrhoea/bloating/flatulence)	Presence of headaches
25	Fever	Feeling unwell
26	Amount of school/work missed
27	Poor weight gain or weight loss
28	Presence of severity of chills/sweats
29	Irritable/feeling cranky