Table 1

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

RankPeople with CF >13 yearsCarers of children 0–18 years
1Coughing up bloodCoughing up blood
2Shortness of breath/difficulty breathingShortness of breath/difficulty breathing
3Feeling fatigued/deconditionedPresence of pain
4Anxiety/worryFeeling anxious/worried
5Sputum production (presence of, or worsening from baseline)Feeling sad/depressed
6Sadness/depressed moodHigh treatment burden
7TirednessGastrointestinal (abdominal pain, diarrhoea, flatulence)
8High treatment burdenImpaired hearing
9Inability to cough/clear up sputumSputum production (presence of, or worsening from baseline)
10Inability to meet personal/school/work goalsPoor appetite/eating difficulties
11Feeling unwellChest tightness
12Poor exercise toleranceLack of energy
13Nausea/vomitingNot feeling well
14CoughingReduced exercise tolerance
15Reduction of usual activitiesFever
16Nausea/vomitingInability of child to meet personal/school/work goals
17Difficulty sleepingPoor weight
18Presence of painDifficulty sleeping
19Presence and severity of wheezingReduced ability to concentrate/think clearly
20Being worried about your CFWheeze
21Reduced ability to concentrate/thing clearlyPresence of sweats/chills
22Chest tightnessReduction of usual activities
23CoughingAmount of school/work missed by child
24Gastrointestinal (diarrhoea/bloating/flatulence)Presence of headaches
25FeverFeeling unwell
26Amount of school/work missed
27Poor weight gain or weight loss
28Presence of severity of chills/sweats
29Irritable/feeling cranky
  • CF, cystic fibrosis.