A Standard Set of Value-Based Patient-Centered Outcomes for Pancreatic Carcinoma: An International Delphi Survey.

BACKGROUND: Global health systems are shifting toward value-based health care to improve patient outcomes in the face of rising health care costs. The challenge is to identify standardized outcome measurements that allow optimal quality-of-care monitoring and comparison to optimize medical practices and patient pathways. A common outcomes definition is required, including medical results (Clinical Reported Outcomes Measurements [CROMs]) and quality-of-life components that matter most to patients (Patient-Reported Outcomes Measurements [PROMs]), which are particularly important for severe pathologies with short life expectancy such as pancreatic cancer. This study aimed to create standardized metrics that could be used for outcomes analysis of pancreatic cancer care. METHODS: A multidisciplinary working group (WG) was assembled. A systematic review was performed to collect the most used outcomes in clinical studies of pancreatic cancers. The study reviewed 570 studies published in the last 10 years. From these studies, 3370 outcomes, including CROMs, and PROMs, were listed and prioritized. The WG reached a consensus on key outcomes, proposed groupings for CROMs and PROMs, identified existing questionnaires that could be used for PROMs collection, and set the timeline for data collection. To refine and validate the final outcomes set, an international external committee completed a Delphi process (two rounds for both CROMS and PROMs). RESULTS: After the systematic literature review, the WG selected 102 outcomes (92 CROMs and 10 PROMs) for submission to the international Delphi vote committee. The committee retrained 89 outcomes (78 CROMs and 11 PROMs). For the PROMs, the WG and the international external committee chose a validated questionnaire, the Functional Assessment of Cancer Therapy-Hepatobiliary, which covers all of the 11 selected PROMs. CONCLUSIONS: A standardized set of outcome measures that need to be validated through international health outcome comparisons and quality-of-care assessments was built. Pilot projects are underway to test and optimize the approach in real-life conditions.

Enhancing medication adherence among inner-city children with asthma: results from pilot studies.

Despite the availability of effective treatments that aid in controlling asthma symptoms, inner-city children with asthma have high rates of morbidity and are frequent users of emergency department services. The goal of these studies was to pilot test an intervention that used social learning strategies (e.g., goal-setting, monitoring, feedback, reinforcement, and enhanced self-efficacy) and targeted known barriers to individualize a family-based asthma action plan. Participants were 15 children with asthma, aged 7-12 years, who had been prescribed at least one daily inhaled steroid. The children and their mothers lived in inner-city Baltimore and all were African-American. Participants received up to five visits in their home by a nurse. Electronic monitors were installed on the children's MDI to provide immediate feedback on medication adherence to the families and validate medication use. At baseline, only 28.6% of the children were using their medications as prescribed. Within four weeks, the number of children who were using their medications appropriately doubled from 28.6% at baseline to 54.1% (90% increase; p = 0.004), while underutilization decreased from 51.2% to 25.4% (100% decrease; p = 0.02). The number of children with no medication use at all dropped from 28.3% at baseline to 15.1% by week 5 (87% decrease; p = 0.009). Thus, within four weeks, more than half the children were using their inhaled steroids appropriately. In addition, the rate of underutilization decreased and that of nonutilization was cut in half. Our initial data suggest that an individualized, home-based intervention can significantly enhance adherence to the daily use of inhaled steroids in inner-city children with asthma. Nevertheless, adherence to daily inhaled steroid therapy remains a significant problem in this group.