The Home Sweet Home study.

Background of the study:

Resident loved ones (mostly spouses or resident family members) are uniquely positioned to witness the abilities/limitations that patients with Chronic Obstructive Pulmonary Disease (COPD) experience during day-to-day life. Moreover, resident loved ones can play an important role in COPD patients’ management and well-being. To date, limited data are available specifically focussing on the resident loved ones' perception of the COPD patient’s health status, the resident loved ones' lifestyle and their possible interaction. Furthermore, loved ones' burden and health in relation to exacerbation-related hospital admission of the person with COPD are not investigated until now.



Primary objectives:

1.1 To investigate the differences between patients’ and resident loved ones' perceptions of patients’ health status and problematic ADLs. 1.2 To study prospectively the effects of an acute COPD exacerbation on resident loved ones' perceptions of patients’ health status and problematic ADLs.



Study design:

The Home Sweet Home study is an observational, longitudinal study.



Study population:

The study population consist of 192 persons with COPD (Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage II, III and IV) and one resident loved one for each person with COPD.



Primary study parameters/outcome of the study:

The resident loved one, their perception of the person with COPD, and the person with COPD will be compared by using the : • Problematic ADLs using the Canadian Occupational Performance Measure (COPM) • COPD Assessment Test (CAT) • mMRC dyspnea scale • Short-Form 12 • Instrumental Activities of Daily Living Scale (IADLS) • EQ-5D • Fatigue using the Subjective Fatigue subscale of the Checklist Individual Strength • Self-efficacy for home walking.

1. To investigate the differences between patients’ and resident loved ones' perceptions of patients’ health status and problematic ADLs;

2. To study prospectively the effects of an acute COPD exacerbation on resident loved ones' perceptions of patients’ health status and problematic ADLs.

Baseline and after 12 months. Only for patients who are admitted to the hospital because of an exacerbation, 2 additional visits are planned. The first visit, only for the loved one, within 7 days after hospital admission of the patient. The other visit, for both the patient and loved one, within 2 weeks after hospital discharge.

N/A