Patient-Centered Approaches to Transitional Care Research and Implementation: Overview and Insights From Patient-Centered Outcomes Research Institute's Transitional Care Portfolio.

BACKGROUND: This Special Issue, Future Directions in Transitional Care Research, focuses on the approaches used and lessons learned by researchers conducting care transitions studies funded by the Patient-Centered Outcomes Research Institute (PCORI). PCORI's approach to transitional care research augments prior research by encouraging researchers to focus on head-to-head comparisons of interventions, the use of patient-centered outcomes, and the engagement of stakeholders throughout the research process. OBJECTIVES: This paper introduces the themes and topics addressed by the articles that follow, which are focused on opportunities and challenges involved in conducting patient-centered clinical comparative effectiveness research in transitional care. It provides an overview of the state of the care transitions field, a description of PCORI's programmatic objectives, highlights of the patient and stakeholder engagement activities that have taken place during the course of these studies, and a brief overview of PCORI's Transitional Care Evidence to Action Network, a learning community designed to foster collaboration between investigators and their research teams and enhance the collective impact of this body of work. CONCLUSIONS: The papers in this Special Issue articulate challenges, lessons learned, and new directions for measurement, stakeholder engagement, implementation, and methodological and design approaches that reflect the complexity of transitional care comparative effectiveness research and seek to move the field toward a more holistic understanding of transitional care that integrates social needs and lifespan development into our approaches to improving care transitions.

Patient-reported quality of supportive care among patients with colorectal cancer in the Veterans Affairs Health Care System.

PURPOSE: High-quality supportive care is an essential component of comprehensive cancer care. We implemented a patient-centered quality of cancer care survey to examine and identify predictors of quality of supportive care for bowel problems, pain, fatigue, depression, and other symptoms among 1,109 patients with colorectal cancer. PATIENTS AND METHODS: Patients with new diagnosis of colorectal cancer at any Veterans Health Administration medical center nationwide in 2008 were ascertained through the Veterans Affairs Central Cancer Registry and sent questionnaires assessing a variety of aspects of patient-centered cancer care. We received questionnaires from 63% of eligible patients (N = 1,109). Descriptive analyses characterizing patient experiences with supportive care and binary logistic regression models were used to examine predictors of receipt of help wanted for each of the five symptom categories. RESULTS: There were significant gaps in patient-centered quality of supportive care, beginning with symptom assessment. In multivariable modeling, the impact of clinical factors and patient race on odds of receiving wanted help varied by symptom. Coordination of care quality predicted receipt of wanted help for all symptoms, independent of patient demographic or clinical characteristics. CONCLUSION: This study revealed substantial gaps in patient-centered quality of care, difficult to characterize through quality measurement relying on medical record review alone. It established the feasibility of collecting patient-reported quality measures. Improving quality measurement of supportive care and implementing patient-reported outcomes in quality-measurement systems are high priorities for improving the processes and outcomes of care for patients with cancer.

In search of synergy: strategies for combining interventions at multiple levels.

The social ecological perspective provides a compelling justification for multilevel intervention. Yet, it offers little guidance for selecting interventions that work together in complementary or synergistic ways. Using a causal modeling framework, we describe five strategies for increasing potential complementarity or synergy among interventions that operate at different levels of influence: accumulation, amplification, facilitation, cascade, and convergence. We illustrate these strategies with examples of multilevel interventions to improve the quality of cancer treatment.

Multilevel interventions: measurement and measures.

BACKGROUND: Multilevel intervention research holds the promise of more accurately representing real-life situations and, thus, with proper research design and measurement approaches, facilitating effective and efficient resolution of health-care system challenges. However, taking a multilevel approach to cancer care interventions creates both measurement challenges and opportunities. METHODS: One-thousand seventy two cancer care articles from 2005 to 2010 were reviewed to examine the state of measurement in the multilevel intervention cancer care literature. Ultimately, 234 multilevel articles, 40 involving cancer care interventions, were identified. Additionally, literature from health services, social psychology, and organizational behavior was reviewed to identify measures that might be useful in multilevel intervention research. RESULTS: The vast majority of measures used in multilevel cancer intervention studies were individual level measures. Group-, organization-, and community-level measures were rarely used. Discussion of the independence, validity, and reliability of measures was scant. DISCUSSION: Measurement issues may be especially complex when conducting multilevel intervention research. Measurement considerations that are associated with multilevel intervention research include those related to independence, reliability, validity, sample size, and power. Furthermore, multilevel intervention research requires identification of key constructs and measures by level and consideration of interactions within and across levels. Thus, multilevel intervention research benefits from thoughtful theory-driven planning and design, an interdisciplinary approach, and mixed methods measurement and analysis.

Multilevel research and the challenges of implementing genomic medicine.

Advances in genomics and related fields promise a new era of personalized medicine in the cancer care continuum. Nevertheless, there are fundamental challenges in integrating genomic medicine into cancer practice. We explore how multilevel research can contribute to implementation of genomic medicine. We first review the rapidly developing scientific discoveries in this field and the paucity of current applications that are ready for implementation in clinical and public health programs. We then define a multidisciplinary translational research agenda for successful integration of genomic medicine into policy and practice and consider challenges for successful implementation. We illustrate the agenda using the example of Lynch syndrome testing in newly diagnosed cases of colorectal cancer and cascade testing in relatives. We synthesize existing information in a framework for future multilevel research for integrating genomic medicine into the cancer care continuum.

Multilevel intervention research: lessons learned and pathways forward.

This summary reflects on this monograph regarding multilevel intervention (MLI) research to 1) assess its added value; 2) discuss what has been learned to date about its challenges in cancer care delivery; and 3) identify specific ways to improve its scientific soundness, feasibility, policy relevance, and research agenda. The 12 submitted chapters, and discussion of them at the March 2011 multilevel meeting, were reviewed and discussed among the authors to elicit key findings and results addressing the questions raised at the outset of this effort. MLI research is underrepresented as an explicit focus in the cancer literature but may improve implementation of studies of cancer care delivery if they assess contextual, organizational, and environmental factors important to understanding behavioral and/or system-level interventions. The field lacks a single unifying theory, although several psychological or biological theories are useful, and an ecological model helps conceptualize and communicate interventions. MLI research designs are often complex, involving nonlinear and nonhierarchical relationships that may not be optimally studied in randomized designs. Simulation modeling and pilot studies may be necessary to evaluate MLI interventions. Measurement and evaluation of team and organizational interventions are especially needed in cancer care, as are attention to the context of health-care reform, eHealth technology, and genomics-based medicine. Future progress in MLI research requires greater attention to developing and supporting relevant metrics of level effects and interactions and evaluating MLI interventions. MLI research holds an unrealized promise for understanding how to improve cancer care delivery.

Significance of functional status data for payment and quality.

To date, the Medicare Program has used functional status information (FSI) in patient assessment tools, performance assessment, payment mechanisms, and--most recently--in quality measures to inform consumer choice. This article explores the rationale for the collection of functional status data to promote innovative models of care and examines issues related to data collection for quality improvement, performance measurement, and payment. In this issue of the Health Care Financing Review, articles focus on collection and classification of functional status for payment and quality purposes.