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

Background:

Recent research shows that the prevalence of patients with very severe chronic obstructive pulmonary
disease (COPD), congestive heart failure (CHF) and chronic renal failure (CRF) continues to rise over the next years.
Scientific studies concerning self-perceived symptoms and care needs in patients with severe to very severe COPD, CHF
and CRF are scarce.

Consequently, it will be difficult to develop an optimal patient-centred palliative care program for patients with end-stage
COPD, CHF or CRF. The present study has been designed to assess the symptoms, care needs, end-of-life care
treatment preferences and communication needs of patients with severe to very severe COPD, CHF or CRF.

Additionally, family distress and care giving burden of relatives of these patients will be assessed.


Methods/design:
A cross-sectional comparative and prospective longitudinal study in patients with end-stage COPD,
CHF or CRF has been designed. Patients will be recruited by their treating physician specialist. Patients and their closest
relatives will be visited at baseline and every 4 months after baseline for a period of 12 months. The following outcomes
will be assessed during home visits: self-perceived symptoms and care needs; daily physical functioning; general health
status; end-of-life care treatment preferences; end-of-life care communication and care-giver burden of family caregivers.

Additionally, end-of-life care communication and prognosis of survival will be assessed with the physician primarily
responsible for the management of the chronic organ failure. Finally, if patients decease during the study period, the
baseline preferences with regard to life-sustaining treatments will be compared with the real end-of-life care.


Discussion:
To date, the symptoms, care needs, caregiver burden, end-of-life care treatment preferences and
communication needs of patients with very severe COPD, CHF or CRF remain unknown.
The present study will increase
the knowledge about the self-perceived symptoms, care-needs, caregiver burden, end-of-life care treatment preferences
and communication needs from the views of patients, their loved ones and their treating physician. This knowledge is
necessary to optimize palliative care for patients with COPD, CHF or CRF.

Patients with moderate to severe COPD, CHF or CRF have been shown to suffer from exercise intolerance, muscle weakness and abnormal changes in body composition,
irrespective of the degree of primary organ failure. Therefore, it seems reasonable to hypothesize that patients with end-stage COPD, CHF or CRF have comparable
daily symptom burden and care needs.

Patients and their closest relatives will be visited at baseline and every 4 months after baseline for a period of 12
months.

Observational study