Advanced chronic obstructive pulmonary disease Respiratory
Conditions
Interventions
Control:
Hospitals will provide patients with treatment as usual. Care will be provided according to the routine practice of each hospital, and in accordance with the practice of the healthcare syste
Sponsors
Vrije Universiteit Brussel
Eligibility
Sex/Gender
All
Age
18 Years to 100 Years
Inclusion criteria
Inclusion criteria: Participant inclusion criteria: Patients: 1. Have a diagnosis of advanced COPD: 1. Spirometry (FEV1): 1.1. Severe COPD: 30% =FEV1 2 OR 2.2. COPD Assessment Test (CAT) >20 OR 3. High-risk exacerbation history: 3.1. = 1 exacerbation leading to previous hospitalisation in the past year OR 3.2. = 1 exacerbation leading to previous ICU admission in the past year 2. Admission to the respiratory ward of the hospital that lasts =48 hours (or likely to be admitted for =48 hours) for an acute exacerbation 3. Live at home Family caregivers: 1. Identified by the patient as the person who gives him or her the most help and support at home on a regular basis 2. Aged 18 years or over
Exclusion criteria
Exclusion criteria: Patient exclusion criteria: 1. Currently receiving care from a formally recognised specialised palliative care team 2. Cognitive impairment preventing informed consent 3. Not able to speak or understand the language in which measurements are conducted, these being: 3.1. English (United Kingdom) 3.2. Dutch (Belgium, the Netherlands) 3.3. Danish (Denmark) 3.4. Portuguese (Portugal) 3.5. Hungarian (Hungary) 4. Patients can be included in the study only once and cannot be re-enrolled during the overall duration study, even if at a different wedge. Family caregiver exclusion criteria: 1. Cognitive impairment preventing informed consent 2. Not able to speak or understand the language in which measurements are conducted
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Percentage of patients who have a respiratory-related readmission to hospital within 90 days of baseline (or until death if within these 90 days), assessed via health record review. | — |
Secondary
| Measure | Time frame |
|---|---|
| Current secondary outcome measures as of 12/09/2025: For patients: 1. Perception of illness measured using the Brief Illness Perception Questionnaire at baseline, 30 days, and 90 days 2. Quality of life measured using the Short Form Chronic Respiratory Questionnaire (SF-CRQ), EQ-5D-5L, and ICECAP Supportive Care Measure (ICECAP-SCM) at baseline, 30 days, and 90 days 3. Mental wellbeing measured using the Patient Health Questionnaire-4 (PHQ-4) at baseline, 30 days, and 90 days 4. Existential wellbeing measured using the McGill Quality of Life Questionnaire-Revised (MQOL-R) existential subscale 5. Preferred place of death + whether this has been discussed with health care professionals measured using a questionnaire item at baseline, 30 days, and 90 days 6. Presence of advance decisions to refuse treatment (ADRTs) and advance care plans (ACPs) assessed through ICLEAR-EU form and medical notes at 90 days For (bereaved) caregivers: 1. Quality of life measured using the EQ-5D-5L at baseline, 30 days, and 90 days 2. Mental wellbeing measured using the PHQ-4 at baseline, 30 days, and 90 days 3. Existential wellbeing measured using the McGill Quality of Life Questionnaire-Revised (MQOL-R) existential subscale 4. Family caregiver burden measured using the Zarit Burden Interview (ZBI-12) at baseline, 30 days, and 90 days 5. Bereaved caregiver views of quality of care and death assessed via VOICES-SF at 3 months post-bereavement Process evaluation: 1. Reach assessed through training attendance list after each ICLEAR-EU training; ICLEAR-EU meeting attendance list after each ICLEAR-EU meeting; Screening log of patients 2. Effectiveness assessed using Self-Efficacy regarding End-Of-Life Communication (S-EOLC) and palliative and end-of-life care-specific education needs (End-of-life Professional Caregiver Survey [EPCS]) at 1-4 weeks before training, 1-4 weeks after start of first intervention wedge; interview with patients and relatives approx. 4 weeks after hospital discharge; I | — |
Countries
Belgium, Denmark, England, Hungary, Netherlands, Portugal, United Kingdom
Contacts
Public ContactJulie Stevens
Outcome results
None listed