Outcomes for patient care and clinical research
Measure | Category | Level | |
Pulmonary sarcoidosis | Patient wellbeing | Physician judgement | Important |
Clinical judgement of improvement, worsening/progression | Physician judgement | Critical | |
Clinical judgement alone | |||
Treatment chest imaging: Scadding score [20], changes in | Treatment imaging | Important | |
Treatment chest imaging: Muers score [49], changes in | |||
PET/CT chest imaging, changes in | Scan | Important | |
Pulmonary function tests: FVC, FEV1, FEV1/FVC, DLCO, SaO2 | Lung function tests | Critical | |
6-min walk distance [50] | Exercise capacity | Important | |
Quality of life | Quality of life | Important | |
SGRQ [51] | |||
Short Form-36 [52] | |||
Fatigue Assessment Scale [53] | |||
SAT Lung [54] | |||
KSQ General health [55] | |||
KSQ Lung health [55] | |||
Serious AEs; life-threatening AEs | AEs | Critical | |
AEs leading to discontinuation | |||
Other AEs | |||
Extrapulmonary sarcoidosis | Physician global assessment | Cutaneous sarcoidosis disease activity | Important |
SASI [56] | |||
CSAMI [57] | |||
Photographs | |||
Clinical judgement of improvement, worsening/progression | Physician judgement | Critical | |
Skin measure of disease | Important | ||
Eye measure of disease | Critical | ||
Kidney measure of disease | Important | ||
Löfgren syndrome measure of disease | |||
Hypercalcaemia | Critical | ||
Quality of life | Quality of life | Critical | |
Fatigue Assessment Scale | |||
SAT Skin [54] | |||
SAT Fatigue [54] | |||
KSQ Dermatology questionnaire | |||
Serious AEs; life-threatening AEs | AEs | Critical | |
AEs leading to discontinuation | |||
Other AEs | |||
Cardiac sarcoidosis | Clinical judgement of improvement, worsening/progression | Physician judgement | Critical |
PET/CT chest imaging, changes in | Treatment imaging | Critical | |
MRI chest imaging, changes in | |||
Arrythmias | Arrythmias | Critical | |
Quality of life | Quality of life | Important | |
Serious AEs; life-threatening AEs | AEs | Critical | |
AEs leading to discontinuation | |||
Other AEs | |||
Neurosarcoidosis | Measures of neurologic disease | Physician judgement | Critical |
Clinical judgement of improvement, worsening/progression | |||
Quality of life | Quality of life | Critical | |
Serious AE; life-threatening AEs | AEs | Critical | |
AEs leading to discontinuation | |||
Other AEs | |||
All categories | Steroid sparing | Steroid sparing | Critical |
PET: positron emission tomography; CT: computed tomography; FVC: forced vital capacity; FEV1: forced expiratory volume in 1 s; DLCO: diffusing capacity of the lung for carbon monoxide; SaO2: arterial oxygen saturation; SGRQ: St George's Respiratory Questionnaire; SAT: Sarcoidosis Assessment Tool; KSQ: King's Sarcoidosis Questionnaire; AE: adverse event; SASI: Sarcoidosis Activity and Severity Instrument; CSAMI: Cutaneous Sarcoidosis Activity and Morphology Instrument; MRI: magnetic resonance imaging.