Table 4 Study assessments

Swedevox Register

X

 Demographics

X

 Height and weight

X

 Spirometry

X

 Blood gases on air and oxygen

X

 Primary and secondary causes of starting LTOT

X

 Oxygen dose, equipment and duration

X

 Use of long-term mechanical ventilator

X

X

 Date and reason of LTOT withdrawal

X

X

Cause of Death Register

 Date, place and causes of death

X

X

Patient Register

 Diagnoses/comorbidity and procedures

X

X

X

 Hospitalizations

X

X

X

Prescribed Drug Register

 Dispensed drug prescription

X

X

X

Clinical visits

 Adverse events

(X)^a

(X)^a

Patient questionnaire

 Self-reported oxygen utilization

X

X

 Breathlessness (MDP, NRS of worst, refractory, mMRC)

X

X

 Fatigue (FACIT-Fatigue)

X

X

 Self-reported physical activity (modified Grimby questionnaire)

X

X

 Cognitive questionnaires (BAS, IQCODE and FAQ)

X

X

 HRQoL (EQ -5D-5 L and CAT)

X

X

 Global impression of change

X

X

 Treatment preference

X

X