TABLE 2

Scoring tools incorporating patient-reported outcome

Test or toolDescriptionConstructs(s)Target populationAdministrationRecall periodRange of scoresFeasibility/cultural validity
Pulmonary exacerbations
 AWESCORE5 domains, each with 2 itemsRespiratory (cough and sputum), physical (energy and exercise), nutritional (appetite and weight), psychological (mood and anxiety) and general health “wellness” and sleepAdultsPaperNR0–100NR
 CFRSD/CFRSD-CRISSSymptom score: respiratory and emotional items (respiratory only in short version); developed for pulmonary exacerbation8 respiratory symptoms, 4 emotional items and 4 other items (or short-version CFRSD-CRISS; 8 respiratory items: difficulty breathing, fever, tired, mucus, chills/sweats, cough, mucus, chest tightness, wheezing)>12 yearsPaper/electronicDaily3–4 point Likert scale, total score 0–100Available in 38 languages
 Symptom score system4 items; pulmonary exacerbation assessmentCough, sputum volume and viscosity, breathlessness, fatigueAdultsPaperDaily4-point Likert scaleNR
Respiratory
 ReS-CF4-item questionnaire; <1 min to completeSelf-reported VAS for respiratory symptoms, cough, chest congestion and sputumAdultsPaperNREach VAS scored separately 0–10 (worst)Screening tool: respiratory symptoms
 SOBQDeveloped for PEX assessment; 17 items (13 respiratory and 4 CF-related impacts)0–6 years and 7–11 yearsNRNRNot applicable
 SOBQ24 items; patients with COPD, CF and lung transplant recipientsMeasures SOB while performing activities of daily livingAdultsPaperNR5-point Likert scale for each response; scores 0–120 (worst)NR
Pain
 BPISeverity and impact of pain on daily functions in people with chronic diseases; short: 5 min, long: 10 min to complete7 domains: general activity, mood, walking ability, normal work (including housework), relationships with others, sleep, enjoyment in lifeAdultsPaperDailyNRPsychometrically and linguistically validated in 24 languages
 DPAQ-CF7 itemsFrequency, duration, intensity, location and coping response to painAdolescents and adultsPaper/electronicDaily5-point Likert scale for each response; total score 0–10NR
  MPI52 items, 3 domains, 12 subscales; 15–30 min to completePain experiences, responses of others to the patient's communicated pain, the extent to which patients participate in activities of daily living18–64 years and >65 years versionsPaperNRNRAvailable in 6 languages
Abdominal
  CF-Abd score28-item PROM for assessment of gastrointestinal involvementAbdominal pain, appetite, bowel movement and symptom-related QoL>6 yearsPaper14 daysNRNR
  Gastrointestinal symptom trackerPROM for assessment of gastrointestinal and nutritional issues4 domains; abdominal pain, stools, eating challenges and adherenceAdolescents and adultsElectronic (iPad)10–14 days0–100 (worst)Easy to administer and complete
Symptoms involving multiple systems
  MSAS-CFPhysical and psychological symptom burdenQoL: respiratory (6 items), psychological burden (5 items) and gastrointestinal (4 items)AdultsPaper7 daysEach symptom 4- or 5-point Likert scalePreviously validated in people with cancer, heart disease, HIV and critical illness

AWESCORE: Alfred Wellness Score; CFRSD: cystic fibrosis (CF) respiratory symptom diary; CRISS: chronic respiratory infection symptom score; ReS-CF: respiratory symptoms in CF tool; SOBQ: Shortness of Breath Questionnaire; BPI: brief pain inventory; DPAQ-CF : Daily Pain Assessment Questionnaire in CF; MPI: multidimensional pain inventory; CF-Abd: CF abdominal; MSAS: Memorial Symptom Assessment Scale; NR: not reported; VAS: visual analogue scale; PEX: pulmonary exacerbation of CF; SOB: shortness of breath; PROM: patient-reported outcome measures; QoL: quality of life.