Table 2 Data collection schedule and measurement instruments for patients, informal caregivers and healthcare professionals

Patient

T0

T3

T6

R

Baseline characteristics

Questionnaire on demographic characteristics and case report form on disease severity

x

Quality of life (primary outcome)

Functional Assessment of Chronic Illness Therapy-Palliative care (FACIT-Pal) scale [35]

x

x

x

Spiritual well-being

Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being (FACIT-Sp-12) scale [36]

x

x

x

Anxiety and depression

Hospital Anxiety and Depression Scale (HADS) [37]

x

x

x

Disease-specific health-related quality of life

Clinical COPD Questionnaire (CCQ)

x

x

x

Satisfaction with care

Single item question on satisfaction with provided care, self-rated on a numeric rating scale (NRS) from 0 to 10

x

x

Unplanned healthcare use

Medical record assessment on number of ED visits (without admission), hospital admission (number and number of days), ICU admission (number and number of days), in the 12 months pre-enrollment up to 12 months after enrollment

x

Date and place of death, place of care in last week of life if applicable

Medical record assessment (and contact with general practitioner if needed)

x

Dose received

Questionnaire on received core elements, based on three validated questionnaires [38,39,40]

x

x

Medical record assessment on core elements

x

Experiences and acceptability

Semi-structured interviews

x^a

Informal caregiver

T0

T3

T6

Baseline characteristics

Questionnaire on demographic characteristics

x

Caregiver burden

Caregiver Reaction Assessment (CRA) scale [41]

x

x

x

Satisfaction with care

Single item question on satisfaction with provided care to the patient, self-rated on a NRS from 0 to 10

x

x

Experiences and acceptability

Semi-structured interviews

x^a

Health care professional

iT0

iT3

iT12

Self-efficacy

End-of-life professional caregiver survey (EPCS) [42]

x

x

x

Role identity

Developed five-item question on role identity based on MIDI questionnaire [43]

x

x

x

Satisfaction with care

Single item question on satisfaction with provided palliative care to patients with COPD, self-rated on a 5-point Likert scale

x

x

x

Dose delivered

Self-reported provision of delivered core elements

x

x

x

Experiences, acceptability and determinants to implementation

Semi-structured interviews

x