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ERJ Open Res ; 5(4)2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31687368


Our study presents findings on a previously developed standard set of clinical outcome data for pulmonary sarcoidosis patients. We aimed to assess whether changes in outcome varied between the different centres and to evaluate the feasibility of collecting the standard set retrospectively. This retrospective observational comparative benchmark study included six interstitial lung disease expert centres based in the Netherlands, Belgium, the UK and the USA. The standard set of outcome measures included 1) mortality, 2) changes in pulmonary function (forced vital capacity (FVC), forced expiratory volume in 1 s, diffusing capacity of the lung for carbon monoxide), 3) soluble interleukin-2 receptor (sIL-2R) change, 4) weight changes, 5) quality-of-life (QoL) measures, 6) osteoporosis and 7) clinical outcome status (COS). Data collection was considered feasible if the data were collected in ≥80% of all patients. 509 patients were included in the retrospective cohort. In total six patients died, with a mean survival of 38±23.4 months after the diagnosis. Centres varied in mean baseline FVC, ranging from 110 (95% CI 92-124)% predicted to 99 (95% CI 97-123)% pred. Mean baseline body mass index (BMI) of patients in the different centres varied between 27 (95% CI 23.6-29.4) kg·m-2 and 31.8 (95% CI 28.1-35.6) kg·m-2. 310 (60.9%) patients were still on systemic therapy 2 years after the diagnosis. It was feasible to measure mortality, changes in pulmonary function, weight changes and COS. It is not (yet) feasible to retrospectively collect sIL-2R, osteoporosis and QoL data internationally. This study shows that data collection for the standard set of outcome measures for pulmonary sarcoidosis was feasible for four out of seven outcome measures. Trends in pulmonary function and BMI were similar for different hospitals when comparing different practices.

BMJ Open Respir Res ; 6(1): e000394, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30956806


Introduction: Routine and international comparison of clinical outcomes enabling identification of best practices for patients with pulmonary sarcoidosis is lacking. The aim of this study was to develop a standard set of outcome measures for pulmonary sarcoidosis, using the value-based healthcare principles. Methods: Six expert clinics for interstitial lung diseases in four countries participated in a consensus-driven RAND-modified Delphi study. A mixed-method approach was applied for the identification of an outcome measures set and initial conditions for patients with pulmonary sarcoidosis. The expert team consisted of multidisciplinary professionals (n=14) from Cleveland Clinic, Cincinnati MC, Erasmus MC, Leuven UZ, Royal Brompton and St. Antonius Hospital. During a ranking process, participants were instructed to rank variables on a scale from 1 to 10 based on whether it has (1) impact of the outcome on quality of life, (2) impact of quality of care on the outcome and (3) the number of patients negatively affected by the outcome. Results: An outcome measures set was defined consisting of seven outcome measures: mortality, pulmonary function, soluble interleukin-2 receptor change as an activity biomarker, weight gain, quality of life, osteoporosis and clinical outcome status. Discussion: Collecting outcomes in pulmonary sarcoidosis internationally and the use of a broadly accepted set can enable international comparison. Differences in outcomes can potentially be used as a starting point for quality improvement initiatives.

BMC Health Serv Res ; 18(1): 1005, 2018 Dec 29.
Artigo em Inglês | MEDLINE | ID: mdl-30594193


BACKGROUND: Using outcome measures to advance healthcare continues to be of widespread interest. The goal is to summarize the results of studies which use outcome measures from clinical registries to implement and monitor QI initiatives. The second objective is to identify a) facilitators and/or barriers that contribute to the realization of QI efforts, and b) how outcomes are being used as a catalyst to change outcomes over time. METHODS: We searched the PubMed, EMBASE and Cochrane databases for relevant articles published between January 1995 and March 2017. We used a standardized data abstraction form. Studies were included when the following three criteria were fulfilled: 1) they relied on structural data collection, 2) when a structural and comprehensive QI intervention had been implemented and evaluated, and 3) impact on improving clinical and/or patient-reported outcomes was described. Data on QI strategies, QI initiatives and the impact on outcomes was extracted using standardized assessment tools. RESULTS: We included 21 articles, of which eight showed statistically significant improvements on outcomes using data from clinical registries. Out of these eight studies, the Chronic Care Model, IT application as feedback, benchmarking and the Collaborative Care Model were used as QI methods. Encouraging trends in realizing improved outcomes through QI initiatives were observed, ranging from improving teamwork, implementation of clinical guidelines, implementation of physician alerts and development of a decision support system. Facilitators for implementing QI initiatives included a high quality database, audits, frequent reporting and feedback, patient involvement, communication, standardization, engagement, and leadership. CONCLUSION: This review suggests that outcomes collected in clinical registries are supportive to realize QI initiatives. Organizational readiness and an active approach are key in achieving improved outcomes.

/normas , Melhoria de Qualidade/organização & administração , Indicadores de Qualidade em Assistência à Saúde/estatística & dados numéricos , Humanos , Liderança , Estudos Observacionais como Assunto , Sistema de Registros
Matern Child Nutr ; 14(1)2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28466569


Adding amylase to fortified blended foods can improve energy density, and increase child's energy and nutrient intake. The efficacy of this strategy is unknown for the World Food Programme's Super Cereal Plus (SC+) and Super Cereal (SC) blends. The primary goal of this study was to investigate the increased energy intake from amylase-containing SC+ and SC compared to control porridges in Burkinabe children. Secondly, energy intake from amylase-containing porridges compared to CERELAC® , Vitazom, and eeZeeBAR™ was studied. Thirdly, caregivers' (n = 100) porridge acceptability was investigated. The design was a randomized double-blind controlled cross-over trial studying the effect of amylase addition to SC+ and SC flours on porridge energy and nutrient intake in healthy Burkinabe children aged 12-23 (n = 80) and 24-35 months (n = 40). Amylase added to porridges increased energy density from 0.68 to 1.16 kcal/g for SC+ and from 0.66 to 1.03 kcal/g for SC porridges. Among children aged 12-23 months, mean energy intake from all porridges with amylase (135-164 kcal/meal) was significantly higher compared to control SC+ porridges (84-98 kcal/meal; model-based average). Among children aged 24-35 months, mean energy intakes were also significantly higher from all porridges with amylase added (245-288 kcal/meal) compared to control SC porridges (175-183 kcal/meal). Acceptability of the porridges among caregivers was rated neutral to good, both for amylase-added and non-amylase-containing porridges. These findings suggest that, among 12-35-month-old, adding amylase to fortified blended foods significantly increased energy and consequently nutrient intake per meal by 67% for SC+ and 47% for SC. Moreover, amylase-containing porridges were well accepted by the caregivers.

Amilases/administração & dosagem , Ingestão de Alimentos/fisiologia , Ingestão de Energia , Alimentos Fortificados , Burkina Faso , Cuidadores , Pré-Escolar , Estudos Cross-Over , Método Duplo-Cego , Grão Comestível , Assistência Alimentar , Preferências Alimentares , Alimentos Fortificados/análise , Humanos , Lactente , Alimentos Infantis , Fenômenos Fisiológicos da Nutrição do Lactente , Agências Internacionais