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Validation of quality indicators for end-of-life communication: results of a multicentre survey.

ABSTRACT: The lack of validated quality indicators is a major barrier to improving end-of-life communication and decision-making. We sought to show the feasibility of and provide initial validation for a set of quality indicators related to end-of-life communication and decision-making.We administered a questionnaire to patients and their family members in 12 hospitals and asked them about advance care planning and goals-of-care discussions. Responses were used to calculate a quality indicator score. To validate this score, we determined its correlation with the concordance between the patients' expressed wishes and the medical order for life-sustaining treatments recorded in the hospital chart. We compared the correlation with concordance for the advance care planning component score with that for the goal-of-care discussion scores.We enrolled 297 patients and 209 family members. At all sites, both overall quality indicators and individual domain scores were low and there was wide variability around the point estimates. The highest-ranking institution had an overall quality indicator score (95% confidence interval) of 40% (36%-44%) and the lowest had a score of 18% (11%-25%). There was a strong correlation between the overall quality indicator score and the concordance measure (r = 0.72, p = 0.008); the estimated correlation between the advance care planning score and the concordance measure (r = 0.35) was weaker than that between the goal-of-care discussion scores and the concordance measure (r = 0.53).Quality of end-of-life communication and decision-making appears low overall, with considerable variability across hospitals. The proposed quality indicator measure shows feasibility and partial validity. Study registration: ClinicalTrials.gov, no. NCT01362855.

SUBMITTER: Heyland DK

PROVIDER: S-EPMC5536987 | biostudies-literature | 2017 Jul

REPOSITORIES: biostudies-literature

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Validation of quality indicators for end-of-life communication: results of a multicentre survey.

Heyland Daren K DK Dodek Peter P You John J JJ Sinuff Tasnim T Hiebert Tim T Tayler Carolyn C Jiang Xuran X Simon Jessica J Downar James J

CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne 20170701 30

<h4>Background</h4>The lack of validated quality indicators is a major barrier to improving end-of-life communication and decision-making. We sought to show the feasibility of and provide initial validation for a set of quality indicators related to end-of-life communication and decision-making.<h4>Methods</h4>We administered a questionnaire to patients and their family members in 12 hospitals and asked them about advance care planning and goals-of-care discussions. Responses were used to calcul ...[more]

PMID: 28760834

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Project description:Background: This study explores how the Roma in Romania, the EU's most concentrated population, are faring in terms of a number of quality of life indicators, including poverty levels, healthcare, education, water, sanitation, and hygiene. It further explores the role of synthetic populations and modelling in identifying at-risk populations and delivering targeted aid. Methods: 135 surveys were conducted across five geographically diverse Romanian communities. Household participants were selected through a comprehensive random walk method. Analyses were conducted on all data using Pandas for Python. Combining land scan data, time-use survey analyses, interview data, and ArcGIS, the resulting synthetic population was analysed via classification and regression tree (CART) analysis to identify hot-spots of need, both ethnically and geographically. Results: These data indicate that the Roma in Romania face significant disparities in education, with Roma students less likely to progress beyond 8 th grade. In addition, the Roma population remains significantly disadvantaged with regard to safe and secure housing, poverty, and healthcare status, particularly in connection to diarrheal disease. In contrast, however, both Roma and non-Roma in rural areas face difficulties regarding full-time employment, sanitation, and water, sanitation, and hygiene infrastructure. In addition, the use of a synthetic population can generate information about 'hot spots' of need, based on geography, ethnicity, and type of aid required. Conclusions: These data demonstrate the challenges that remain to the Roma population in Romania, and also point to the myriad of ways in which all rural Romanians, regardless of ethnicity, are encountering hardship. This study highlights an approach that combines traditional survey data with more wide-reaching geographically based data and CART analysis to determine 'hot spot' areas of need in a given population. With the appropriate inputs, this tool can be extrapolated to any population in any country.

Project description:IntroductionPsoriatic disease (PsD) is a chronic systemic disorder affecting numerous body areas, including skin and joints. Patients' perspectives regarding understanding their disease and dialogue with healthcare professionals (HCPs) on treatment strategies is becoming increasingly important in the holistic management of PsD. The study aim was to determine patients' understanding of the systemic nature of psoriasis and psoriatic arthritis (PsA) and the associated burden of living with these diseases. The relationship between patient and HCP was also evaluated.MethodsPsoriasis and Beyond: The Global Psoriatic Disease Survey was a cross-sectional, quantitative online survey, conducted in patients with moderate to severe plaque psoriasis with or without concomitant PsA. Here, we report interim analysis results.ResultsA total of 1678 respondents from 11 countries were included. Overall, 31% of patients with psoriasis reported concomitant PsA, 80% of whom considered their PsA severity as moderately or highly active. In total, 63% of patients had heard the term "psoriatic disease". Few patients were aware of psoriasis manifestations (PsA, 29%; axial symptoms, 18%) or comorbidities (obesity, 21%; cardiovascular disease, 18%). Among patients with psoriasis and concomitant PsA, 70% reported swollen and tender joints, especially of the finger(s) and/or toe(s). Most patients (84%) experienced stigma and discrimination and reported a negative impact of their disease on work, emotions, and relationships. Overall, 42% of patients had never discussed treatment goals with their HCP. Patients who were dissatisfied with their current treatment (psoriasis, 15%; psoriasis with PsA, 14%) reported incomplete relief of skin symptoms (57%) and joint symptoms (45%) as primary reasons for dissatisfaction.ConclusionsDespite many patients having heard the term "psoriatic disease", the majority were unaware of the systemic nature and increased risk of comorbidities associated with PsD. This interim analysis highlights the need for patient education, productive patient-HCP dialogue, and shared decision-making in optimal disease management.

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Validation of quality indicators for end-of-life communication: results of a multicentre survey.

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Validation of quality indicators for end-of-life communication: results of a multicentre survey.

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