Abstract
BackgroundRecent 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/designA 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.DiscussionTo 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. Here, the design of the present study has been described. A preliminary analysis of the possible strengths, weaknesses and clinical consequences is outlined.
Highlights
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 years
It is only known that patients with end-stage COPD, CHF or CRF have suffered from incapacitating symptoms while only a minority of these symptoms/problems has been treated appropriately. [11,12,13,14,15,16] In the interest of patients with severe to very severe COPD, CHF or CRF, and in the interest of their close relatives, it is of major importance to extent the currently available knowledge concerning assessment and treatment of self-perceived symptoms and care needs to optimise existing treatment options, to develop completely new treatment options and to offer adequate relief of self-perceived symptoms and care needs
Georges Respiratory Questionnaire (SGRQ, only for COPD patients) [34], Minnesota Living with Heart Failure Questionnaire (MLHFQ, only for CHF patients) [35], Kidney Disease Quality Of Life questionnaire (KDQOL, only for CRF patients) [36]; anxiety and depression: Hospital Anxiety and Depression Scale (HADS) [37]; daily physical functioning: Timed 'Up and Go' test (TUG) [38], Care Dependency Scale (CDS) [39]; symptom checklist for the patients to determine the degree of self-perceived physical and psychological symptoms using Visual Analogue Scales (VAS); current disease management checklist; end-of-life care communication: Quality Of Communication questionnaire (QOC) [40], Barriers and Facilitators Questionnaire (BFQ) [41]; endof-life care treatment preferences [42], Willingness to Accept Life-sustaining Treatments questionnaire (WALT) [22]; weight and length
Summary
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 years. To the best of the present authors' knowledge, no management/treating program is currently aiming at the self-perceived symptoms and care needs of patients with severe to very severe COPD, CHF or CRF. [11,12,13,14,15,16] In the interest of patients with severe to very severe COPD, CHF or CRF, and in the interest of their close relatives, it is of major importance to extent the currently available knowledge concerning assessment and treatment of self-perceived symptoms and care needs to optimise existing treatment options, to develop completely new treatment options and to offer adequate relief of self-perceived symptoms and care needs It is only known that patients with end-stage COPD, CHF or CRF have suffered from incapacitating symptoms while only a minority of these symptoms/problems has been treated appropriately. [11,12,13,14,15,16] In the interest of patients with severe to very severe COPD, CHF or CRF, and in the interest of their close relatives, it is of major importance to extent the currently available knowledge concerning assessment and treatment of self-perceived symptoms and care needs to optimise existing treatment options, to develop completely new treatment options and to offer adequate relief of self-perceived symptoms and care needs
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