Development and validation of a French questionnaire concerning patients' perspectives of the quality of palliative care: the QUALI-PALLI-Patient.

BACKGROUND: Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view. METHODS: Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire. RESULTS: A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers' listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach's α 0.5-0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS ≥ 60%, 40-50% and ≤ 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms' severity and impact on life. Each subscale, except "possibility to refuse", correlated with general satisfaction. CONCLUSIONS: Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings. TRIAL REGISTRATION: clinicaltrials.gov NCT02814682 , registration date 28.6.2016.

Improved prognosis of septic shock in patients with cirrhosis: a multicenter study*.

OBJECTIVE: To determine the evolution of the outcome of patients with cirrhosis and septic shock. DESIGN: A 13-year (1998-2010) multicenter retrospective cohort study of prospectively collected data. SETTING: The Collège des Utilisateurs des Bases des données en Réanimation (CUB-Réa) database recording data related to admissions in 32 ICUs in Paris area. PATIENTS: Thirty-one thousand two hundred fifty-one patients with septic shock were analyzed; 2,383 (7.6%) had cirrhosis. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Compared with noncirrhotic patients, patients with cirrhosis had higher Simplified Acute Physiology Score II (63.1 ± 22.7 vs 58.5 ± 22.8, p < 0.0001) and higher prevalence of renal (71.5% vs 54.8%, p < 0.0001) and neurological (26.1% vs 19.5%, p < 0.0001) dysfunctions. Over the study period, in-ICU and in-hospital mortality was higher in patients with cirrhosis (70.1% and 74.5%) compared with noncirrhotic patients (48.3% and 51.7%, p < 0.0001 for both comparisons). Cirrhosis was independently associated with an increased risk of death in ICU (adjusted odds ratio = 2.524 [2.279-2.795]). In patients with cirrhosis, factors independently associated with in-ICU mortality were as follows: admission for a medical reason, Simplified Acute Physiology Score II, mechanical ventilation, renal replacement therapy, spontaneous bacterial peritonitis, positive blood culture, and infection by fungus, whereas direct admission and admission during the most recent midterm period (2004-2010) were associated with a decreased risk of death. From 1998 to 2010, prevalence of septic shock in patients with cirrhosis increased from 8.64 to 15.67 per 1,000 admissions to ICU (p < 0.0001) and their in-ICU mortality decreased from 73.8% to 65.5% (p = 0.01) despite increasing Simplified Acute Physiology Score II. In-ICU mortality decreased from 84.7% to 68.5% for those patients placed under mechanical ventilation (p = 0.004) and from 91.2% to 78.4% for those who received renal replacement therapy (p = 0.04). CONCLUSIONS: The outcome of patients with cirrhosis and septic shock has markedly improved over time, akin to the noncirrhotic population. In 2010, the in-ICU survival rate was 35%, which now fully justifies to admit these patients to ICU.

Development and Validation of the QUALI-PALLI-FAM Questionnaire for Assessing Relatives' Perception of Quality of Inpatient Palliative Care: A Prospective Cross-Sectional Survey.

CONTEXT: Relatives of patients receiving palliative care are at risk for psychological and physical distress, and their perception of quality of care can influence patients' quality of life. OBJECTIVES: The purpose of this study was to develop and validate the QUALI-PALLI-FAM questionnaire (QUAlity of PALLIative car from FAMilies' perspective) to measure families' perception of and satisfaction with palliative care. METHODS: An exploratory factor analysis was conducted, and we evaluated the questionnaire's internal consistency using Cronbach's alpha, its stability across various strata, and the correlation between the QUALI-PALLI-FAM (factors, total score, and global satisfaction) and the total score of the FAMCARE (FAMily satisfaction with CARE) questionnaire. RESULTS: This multicentric prospective cross-sectional survey was conducted in seven French hospitals, namely, three palliative care units and four standard medical units with a mobile palliative care team. The questionnaire was completed by 170 relatives of patients (more than 90% of patients had advanced cancer). The final questionnaire included 14 items across three domains: organization of care and availability of caregivers, medical information provision, and confidence and involvement of relatives. Internal consistency was good for all subscales (Cronbach's α = 0.74-0.86). Our questionnaire was stable across various strata: age and gender (patients and relatives), Palliative Performance Scale scores, and care settings. The QUALI-PALLI-FAM total score was correlated with the total FAMCARE score. CONCLUSION: The QUALI-PALLI-FAM appears to be a valid, reliable, and well-accepted tool to explore relatives' perception of quality of inpatient palliative care and complements the QUALI-PALLI-PAT questionnaire. Further testing is required in various settings and countries.

Temporal trends in critical events complicating HIV infection: 1999-2010 multicentre cohort study in France.

PURPOSE: Multicentre data are limited to appraise the management and prognosis of critically ill human immunodeficiency virus (HIV)-infected patients. We sought to describe temporal trends in demographic and clinical characteristics, indications for intensive care and outcome in this patient population. METHODS: We conducted a cohort study of unselected HIV-infected patients admitted between 1999 and 2010 to 34 French ICUs contributing to the CUB-Réa prospective database. RESULTS: We included 6,373 consecutive patients. Over the 12-year period, increases occurred in median age (39 years in 1999-2001; 47 years in 2008-2010, p < 0.0001) and prevalence of comorbidities (notably malignancies, from 6.7 to 16.4%, p < 0.0001). Admissions for respiratory failure (39.8% overall), shock (8.1%) and coma (22.7%) decreased (p < 0.0001), while those for sepsis (19.3%) remained stable. The main final diagnoses were bacterial sepsis (24.6%) and non-bacterial acquired immune deficiency syndrome (AIDS)-defining diseases (steady decline from 26.0 to 17.5%, p < 0.0001). Patients increasingly received mechanical ventilation (from 42.9 to 54.0%) and renal replacement therapy (from 9.6 to 16.8%) (p < 0.0001), whereas vasopressor use remained stable (27.4%). ICU readmissions increased after 2004 (p < 0.0001). ICU and hospital mortality (17.6 and 26.9%, respectively) dropped markedly in the most severely ill patients requiring multiple life-sustaining therapies. Malignancies and chronic liver disease were heavily associated with hospital mortality by multivariate analysis, while the most common AIDS-defining complications (Pneumocystis jirovecii pneumonia, cerebral toxoplasmosis and tuberculosis) had no independent impact. CONCLUSIONS: Progressive ageing, increasing prevalence of comorbidities (mainly malignancies), a steady decline in AIDS-related illnesses and improved benefits from life-sustaining therapies were the main temporal trends in HIV-infected patients requiring ICU admission.