BACKGROUND: Supportive care clinical practice guidelines (CPGs) facilitate the incorporation of the best available evidence into pediatric cancer care. We aimed to assess the impact of the work of the Children\'s Oncology Group (COG) Supportive Care Guideline Task Force on institutional supportive care practices.
METHODS: An online survey was distributed to representatives at 209 COG sites to assess the awareness, use, and helpfulness of COG-endorsed supportive care CPGs. Availability of institutional policies regarding 13 topics addressed by current COG-endorsed CPGs was also assessed. Respondents described their institutional processes for developing supportive care policies.
RESULTS: Representatives from 92 COG sites responded to the survey, and 78% (72/92) were \"very aware\" of the COG-endorsed supportive care CPGs. On average, sites had policies that addressed seven COG-endorsed supportive care CPG topics (median = 7, range: 0-12). Only 45% (41/92) of sites reported having institutional processes for developing supportive care policies. Of these, most (76%, 31/41) reported that the COG-endorsed CPGs have a medium or large impact on policy development. Compared with sites without processes for supportive care policy development, sites with established processes had policies on a greater number of topics aligned with current COG-endorsed CPG topics (mean = 6.6, range: 0-12 vs mean = 7.9, range: 2-12; p = 0.027).
CONCLUSIONS: Most site respondents were aware of the COG-endorsed supportive care CPGs. Less than half of the COG sites represented in the survey have processes in place to implement supportive care policies. Improvement in local implementation is required to ensure that patients at COG sites receive evidence-based supportive care.

As clinical practice variation has been problematized as a symptom of suboptimal care and inefficient resource spending, consistency in the delivery of healthcare is a recurring policy goal. We examine a case where the introduction of a new treatment is most likely to provide consistency in healthcare delivery because it was introduced with a national clinical practice guideline representing consensus about best clinical practice among leading clinicians, and because care delivery was highly centralized to few high-volume treatment units. Despite the consensus on best clinical practice and care centralization, this study shows pronounced regional variation in patient outcomes and treatment costs that increased over time. Using a mixed-methods design, we find that the lack of consistency in care was largely unrelated to patient-specific characteristics, but seemed to reflect structural differences in the regional organization and financing of healthcare delivery. We conclude that the value of clinical practice guidelines is undermined when structural barriers limit the ability of clinicians and clinical managers to scale up treatment, and that some degree of decentralization may be a tool to maintain treatment intensity when the treatment effect is dependent on a high treatment intensity.

Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.

BACKGROUND: Universal health coverage promises equity in access to and quality of health services. However, there is variability in the quality of the care (QoC) delivered at health facilities in low and middle-income countries (LMICs). Detecting gaps in implementation of clinical guidelines is key to prioritizing the efforts to improve quality of care. The aim of this study was to present statistical methods that maximize the use of existing electronic medical records (EMR) to monitor compliance with evidence-based care guidelines in LMICs.
METHODS: We used iSanté, Haiti\'s largest EMR to assess adherence to treatment guidelines and retention on treatment of HIV patients across Haitian HIV care facilities. We selected three processes of care - (1) implementation of a \'test and start\' approach to antiretroviral therapy (ART), (2) implementation of HIV viral load testing, and (3) uptake of multi-month scripting for ART, and three continuity of care indicators - (4) timely ART pick-up, (5) 6-month ART retention of pregnant women and (6) 6-month ART retention of non-pregnant adults. We estimated these six indicators using a model-based approach to account for their volatility and measurement error. We added a case-mix adjustment for continuity of care indicators to account for the effect of factors other than medical care (biological, socio-economic). We combined the six indicators in a composite measure of appropriate care based on adherence to treatment guidelines.
RESULTS: We analyzed data from 65,472 patients seen in 89 health facilities between June 2016 and March 2018. Adoption of treatment guidelines differed greatly between facilities; several facilities displayed 100% compliance failure, suggesting implementation issues. Risk-adjusted continuity of care indicators showed less variability, although several facilities had patient retention rates that deviated significantly from the national average. Based on the composite measure, we identified two facilities with consistently poor performance and two star performers.
CONCLUSIONS: Our work demonstrates the potential of EMRs to detect gaps in appropriate care processes, and thereby to guide quality improvement efforts. Closing quality gaps will be pivotal in achieving equitable access to quality care in LMICs.

Racial and ethnic minorities are at risk for disparities in quality of care after out-of-hospital cardiopulmonary arrest (OHCA). As such, we examined associations between race and ethnicity and use of guideline-recommended and life-sustaining procedures during hospitalizations for OHCA.
This was a retrospective study of hospitalizations for OHCA in all acute-care, non-federal California hospitals from 2009 to 2011. Associations between the use of (1) guideline-recommended procedures (cardiac catheterization for ventricular fibrillation/tachycardia, therapeutic hypothermia), (2) life-sustaining procedures (percutaneous endoscopic gastrostomy (PEG)/tracheostomy, renal replacement therapy (RRT)), and (3) palliative care and race/ethnicity were examined using hierarchical logistic regression analysis.
Among 51,198 hospitalizations for OHCA, unadjusted rates of cardiac catheterization were 34.9% in Whites, 19.8% in Blacks, 27.2% in Hispanics, and 30.9% in Asians (P < 0.01). Rates of therapeutic hypothermia were 2.3% in Whites, 1.1% in Blacks, 1.3% in Hispanics, and 1.9% in Asians (P < 0.01). Rates of PEG/tracheostomy and RRT were 2.2% and 9.8% in Whites, 5.7% and 19.9% in Blacks, 4.2% and 19.9% in Hispanics, and 3.4% and 18.2% in Asians, respectively (P < 0.01). Rates of palliative care were 14.8% in Whites, 9.6% in Blacks, 10.1% in Hispanics, and 14.3% in Asians (P < 0.01). Differences in utilization of procedures persisted after adjustment for patient and hospital-related factors.
Racial and ethnic minorities are less likely to receive guideline-recommended interventions and palliative care, and more likely to receive life-sustaining treatments following OHCA. These findings suggest that significant disparities exist in medical care after OHCA.

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BACKGROUND: Achieving consensus from a range of relevant stakeholders about an agreed set of core outcomes to be measured and reported as a minimum in clinical trials has the potential to enhance evidence synthesis and make findings more relevant and applicable. Intervention research to improve outcomes for young adults with type 1 diabetes (T1DM) is hampered by inconsistent use of outcome measures. This population frequently struggles to manage their condition and reports suboptimal clinical outcomes. Our aim was to conduct an international, e-Delphi consensus study to identify a core outcome set (COS) that key stakeholders (young adults with T1DM, diabetes health professionals, diabetes researchers and diabetes policy makers) consider as essential outcomes for future intervention research.
METHODS: Using a list of 87 outcomes generated from a published systematic review, we administered two online surveys to a sample of international key stakeholders. Participants in the first survey (survey 1; n = 132) and the second survey (survey 2; n = 81) rated the importance of the outcomes. Survey 2 participants received information on total mean rating for each outcome and a reminder of their personal outcome ratings from Survey 1. Survey 2 results were discussed at a consensus meeting and participants (n = 12: three young adults with T1DM, four diabetes health professionals, four diabetes researchers and one diabetes policy maker) voted on outcomes. Final core outcomes were included provided that 70% of consensus group participants voted for their inclusion.
RESULTS: Eight core outcomes were agreed for inclusion in the final COS: measures of diabetes-related stress; diabetes-related quality of life; number of severe hypoglycaemic events; self-management behaviour; number of instances of diabetic ketoacidosis (DKA); objectively measured glycated haemoglobin (HbA1C); level of clinic engagement; and perceived level of control over diabetes.
CONCLUSIONS: This study is the first to identify a COS for inclusion in future intervention trials to improve outcomes for young adults with T1DM. Use of this COS will improve the quality of future research and increase opportunities for evidence synthesis. Future research is necessary to identify the most robust outcome measure instruments.

OBJECTIVE: There are few studies exploring why adherence to clinical practice guidelines for the treatment of childhood type 1 diabetes is suboptimal. Our objective was to describe healthcare providers\' perspectives on the facilitators of and barriers to adhering to pediatric diabetes treatment guidelines.
METHODS: We fielded an electronic survey to 260 pediatric diabetes healthcare providers (physicians, nurses, dietitians) in British Columbia, Canada, followed by qualitative interviews with a purposeful sample (N=15) of physicians and allied healthcare providers. Descriptive statistics and directed content analysis were used.
RESULTS: We received 95 of 260 survey responses(37%). Of the 260 healthcare providers who received the survey, 116 were known to be working in a pediatric diabetes centre, and 71 of 116 (61%) responded. Almost all providers were aware of (92%) and familiar with (77%) the Canadian Diabetes Association clinical practice guidelines, and most were in agreement with the recommendations. Patient-level factors, such as poor adherence and patient/family preferences for higher glycemic targets, as well as inadequate resources (i.e. funding, mental health support), were identified as significant barriers. Qualitative interviews identified 3 key themes: 1) working collectively provincially; 2) supporting emotional and mental health and 3) frequent interactions with patients. A provincial health delivery and communication model, as well as mental health support integrated into routine patient care, were recommended.
CONCLUSIONS: The results of this study can guide resource allocation toward key priorities, such as increased investment in mental health support for children with diabetes. The next steps include collecting patient and family perspectives on improving guideline adherence.