Self-perceived symptoms and care needs of patients with severe to very severe chronic obstructive pulmonary disease, heart failure or renal failure and its consequences for their closest relatives.

Recent research shows that the prevalence of patients with very severe chronic
obstructive pulmonary disease (COPD), chronic heart failure (CHF) and chronic
renal failure (CRF) continues to rise over the next years.
Scientific studies concerning self-perceived problems and care needs in
patients with severe to very severe COPD, CHF or CRF are scarce. Consequently,
it will be impossible to develop an optimal patient-centred management
programme for patients with severe to very severe COPD, CHF, or CRF.

1.1 What are the self-perceived symptoms and care needs of patients with
moderate to very severe COPD, CHF or CRF and to what extent do they differ from
each other?
1.2 Do these self-perceived symptoms and care needs relate to patients* daily
functioning, health status and mood status?
1.3 Whether and to what extent are self-perceived symptoms and care needs
different between patients with moderate COPD, severe COPD, very severe COPD
without long-term oxygen therapy or very severe COPD with long-term oxygen
therapy?
2.1 How are the self-perceived symptoms and care needs of patients with
moderate to very severe COPD, CHF or CRF perceived by their closest relatives?
2.2 Whether and to what extent do self-perceived symptoms and care needs of
patients with moderate to very severe COPD affect caregiver burden?
3.1 What are the preferences with regard to life-sustaining treatments of
patients with moderate to very severe COPD and of their closest relatives?
3.2 Whether and to what extent do these preferences differ from those of
patients with end-stage CHF or CRF?
4.1 How do patients with moderate to very severe COPD, CHF or CRF perceive
end-of-life care planning (i.e. communication about survival prognosis and
life-sustaining treatments) with their closest relatives and their treating
chest physician?
5.1 How do self-perceived symptoms, needs and preferences with regard to
life-sustaining treatments and management of patients with severe to very
severe COPD, CHF or CRF change over time according to the patients and their
closest relatives?

Cross-sectional comparative and prospective longitudinal

The load for patients will be low, because patients will be visited at home for
four times for a venapunction (once), spirometry (once) measurement of length
(once), measurement of weight, a timed up-and-go test and filling out/answering
13 questionnaires or interviews. For one year patients with COPD or CHF will
have to fill out a diary every day. These will probably not increase discomfort
and sensations like dyspnea. The relatives of patients will be visited at home
for four times for filling out 3 questionnaires and answering 1 semi-structured
interview. Patients with COPD GOLD-stage II and their relatives will only be
visited once.