Test or tool | Description | Constructs(s) | Target population | Administration | Recall period | Range of scores | Feasibility/cultural validity |
Pulmonary exacerbations | |||||||
AWESCORE | 5 domains, each with 2 items | Respiratory (cough and sputum), physical (energy and exercise), nutritional (appetite and weight), psychological (mood and anxiety) and general health “wellness” and sleep | Adults | Paper | NR | 0–100 | NR |
CFRSD/CFRSD-CRISS | Symptom score: respiratory and emotional items (respiratory only in short version); developed for pulmonary exacerbation | 8 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 years | Paper/electronic | Daily | 3–4 point Likert scale, total score 0–100 | Available in 38 languages |
Symptom score system | 4 items; pulmonary exacerbation assessment | Cough, sputum volume and viscosity, breathlessness, fatigue | Adults | Paper | Daily | 4-point Likert scale | NR |
Respiratory | |||||||
ReS-CF | 4-item questionnaire; <1 min to complete | Self-reported VAS for respiratory symptoms, cough, chest congestion and sputum | Adults | Paper | NR | Each VAS scored separately 0–10 (worst) | Screening tool: respiratory symptoms |
SOBQ | Developed for PEX assessment; 17 items (13 respiratory and 4 CF-related impacts) | 0–6 years and 7–11 years | NR | NR | Not applicable | ||
SOBQ | 24 items; patients with COPD, CF and lung transplant recipients | Measures SOB while performing activities of daily living | Adults | Paper | NR | 5-point Likert scale for each response; scores 0–120 (worst) | NR |
Pain | |||||||
BPI | Severity and impact of pain on daily functions in people with chronic diseases; short: 5 min, long: 10 min to complete | 7 domains: general activity, mood, walking ability, normal work (including housework), relationships with others, sleep, enjoyment in life | Adults | Paper | Daily | NR | Psychometrically and linguistically validated in 24 languages |
DPAQ-CF | 7 items | Frequency, duration, intensity, location and coping response to pain | Adolescents and adults | Paper/electronic | Daily | 5-point Likert scale for each response; total score 0–10 | NR |
MPI | 52 items, 3 domains, 12 subscales; 15–30 min to complete | Pain experiences, responses of others to the patient's communicated pain, the extent to which patients participate in activities of daily living | 18–64 years and >65 years versions | Paper | NR | NR | Available in 6 languages |
Abdominal | |||||||
CF-Abd score | 28-item PROM for assessment of gastrointestinal involvement | Abdominal pain, appetite, bowel movement and symptom-related QoL | >6 years | Paper | 14 days | NR | NR |
Gastrointestinal symptom tracker | PROM for assessment of gastrointestinal and nutritional issues | 4 domains; abdominal pain, stools, eating challenges and adherence | Adolescents and adults | Electronic (iPad) | 10–14 days | 0–100 (worst) | Easy to administer and complete |
Symptoms involving multiple systems | |||||||
MSAS-CF | Physical and psychological symptom burden | QoL: respiratory (6 items), psychological burden (5 items) and gastrointestinal (4 items) | Adults | Paper | 7 days | Each symptom 4- or 5-point Likert scale | Previously 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.