Is breathlessness what the professional says it is? Analysis of patient and professionals' assessments from a German nationwide register.

PURPOSE: Breathlessness is a common and distressing symptom in patients with advanced disease. Patients' self-report is deemed to be the most valid method of symptom assessment. When patients are not capable of self-assessment, professionals' assessment is often used as alternative but evidence on the validity is conflicting. The aim of this study was to compare self- and professionals' assessment of breathlessness regarding presence and severity in patients with advanced disease. METHODS: Secondary analysis of a cross-sectional, multi-centre and nationwide register (HOspice and Palliative Care Evaluation (HOPE)). Documented inpatients from hospices and palliative care units from 2006 to 2008 who completed the self-assessed MInimal DOcumentation System (MIDOS) were included. Professionals' assessment were based on the integrated symptom and problem checklist (symptom scores, 0-3). Cohen's kappa (κ) was used to estimate the 'level of agreement' (LoA). RESULTS: Two thousand six hundred twenty-three patients (mean age, 66.9 (SD, 12.8); 54.4% female; median Eastern Cooperative Oncology Group score, 3; 95.9% with malignant disease) were analysed. Prevalence of breathlessness was 53.4% (1,398 patients) by professionals' and 53.1% (1,410 patients) by self-assessment. Presence was correctly evaluated by professionals in 80.9% of cases (sensitivity, 81.8%; specificity, 79.8%). Severity of breathlessness was correctly estimated in 65.7% of cases. LoA was good (κ=0.62) for the evaluation of presence of breathlessness and moderate (κ=0.5) for the estimation of severity. The proportion of over- or underestimated scores was similar. CONCLUSIONS: If patient's self-rating, the gold standard of symptom assessment, is not possible, professionals' assessment might be a valid alternative, at least for assessing the presence of breathlessness.

What is special about patients with lung cancer and pulmonary metastases in palliative care? Results from a nationwide survey.

BACKGROUND: Patients with advanced lung cancer constitute a special focus in palliative care not only for epidemiological or prognostic reasons, but also because their symptom burden is felt to be widespread and difficult to treat. This study describes disease-specific characteristics and the symptom burden of patients with advanced incurable lung cancer, comparing them with patients suffering from other diseaseentities. METHODS: A secondary analysis of the nationwide Hospice and Palliative Care Evaluation (HOPE) was performed, by focussing on inpatient hospice and palliative care unit patients and by using descriptive methods. RESULTS: From 2006 to 2008, 5487 inpatients were registered, 874 of which were diagnosed with lung cancer and 1884 with pulmonary metastases. Symptoms such as weakness, tiredness, or pain were most prevalent in all subgroups. Dyspnea was significantly more prevalent in all patients with different kinds of pulmonary tumor manifestations; confusion was significantly more prevalent in patients with lung cancer. Dyspnea could not be treated as effectively as pain or nausea. Confusion and nursing problems worsened during the observation period. Dyspnea and confusion were associated with increased risk of death during the observational period. CONCLUSION: The symptom pattern of patients with lung cancer is characterized by dyspnea and confusion--symptoms that are difficult to treat until discharge and that imply a worse prognosis. Therefore, increased research on the pathophysiology and treatment of dyspnea and confusion is required, and efforts in advance care planning and anticipation of dyspnea and confusion as a critical symptom in patients with lung cancer should be reinforced.

[Management of refractory dyspnoea in patients with advanced diseases - evidence-based update for clinical practice]. / Therapie der refraktären Atemnot bei Patienten mit fortgeschrittenen Erkrankungen - Evidence-based update für den klinischen Alltag.

Many patients with advanced diseases complain about refractory breathlessness when breathlessness is present although the underlying disease is optimal treated. After exclusion of potential curable causes of breathlessness, management of refractory breathlessness includes general approaches, pharmacological (opioids) and non-pharmacological (e.g. handheld fan, rollator) interventions. Oxygen should be used far less than used in clinical practice at the moment and needs critical appraisal of effectiveness.