The Home Sweet Home study: An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease (COPD).

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, however, 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.

Secondary objectives:
2.1 To investigate the differences between patients* and resident loved ones*
perceptions of patients* mood status, care dependency and daily symptoms.
2.2 To study the relationship between lifestyle factors in COPD patients and
their resident loved ones.
2.3 To study prospectively the effects of an acute COPD exacerbation on
resident loved ones* perceptions of patients* mood status, care dependency and
daily symptoms.
2.4 To investigate resident loved ones* burden due to patients care dependency.
2.5 To investigate the general wellbeing of patients when discrepancies exist
between the patients* and resident loved ones* perceptions of patients* care
dependency.
2.6 To investigate if general wellbeing of resident loved ones is influenced by
the health status of patients.
2.7 To investigate if general wellbeing of patients is influenced by the mood
status of their resident loved ones.
2.8 To investigate whether and to what extent loved ones* burden and resident
loved ones* health and mood status are influenced by exacerbation-related
hospital admissions.
2.9 To investigate resident loved ones* knowledge about COPD and the
relationship with anxiety and social support.
2.10 To explore causes for a difference in perception between patients and
loved one*s about the problems in everyday life of the patient.

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

To minimize participants* burden, all tests and questionnaires will be assessed
during home visits. A minimal of two visits is planned, one visit at baseline
and one visit after 12 months. Both visits take about 2.5 hours for the person
with COPD and 3 hours for the resident loved one. Two additional home visits
will be planned when an exacerbation-related hospital admission occurs during
12 months follow-up. Within seven days after admission, the loved one will be
visited at home. This visit will take about 2 hours. Two weeks after discharge,
the second visit will take place. The duration of this visit, in which both the
person with COPD and the loved one are participating, is equal to the duration
of the baseline visit. All procedures in this study are in use in everyday
clinical practice. Only the post-bronchodilator spirometry could give some
risks. Side effects only occur in minimal cases. Possible side effects are:
irritation of the mouth and throat, nausea, vibrations of fingers and hands,
headache, restlessness, rapid heartbeat, palpitations and high blood pressure.
About ten patients with COPD and ten loved ones will be asked to participate in
one qualitative interview after completing the baseline and follow-up visits of
the Home Sweet Home study. This qualitative interview with both the patient and
the loved one will be done during an additional home visit. The duration of the
follow-up measurement will be approximately one hour.