Evaluating variation in pre-operative evaluation and planning for children undergoing atrial or ventricular septal defect repair.

BACKGROUND: CHD care is resource-intensive. Unwarranted variation in care may increase cost and result in poorer health outcomes. We hypothesise that process variation exists within the pre-operative evaluation and planning process for children undergoing repair of atrial septal defect or ventricular septal defect and that substantial variation occurs in a small number of care points. METHODS: From interviews with staff of an integrated congenital heart centre, an initial process map was constructed. A retrospective chart review of patients with isolated surgical atrial septal defect and ventricular septal defect repair from 7/1/2018 through 11/1/2020 informed revisions of the process map. The map was assessed for points of consistency and variability. RESULTS: Thirty-two surgical atrial septal defect/ventricular septal defect repair patients were identified. Ten (31%) were reviewed by interventional cardiology before surgical review. Of these, 6(60%) had a failed catheter-based closure and 4 (40%) were deemed inappropriate for catheter-based closure. Thirty (94%) were reviewed in case conference, all attended surgical clinic, and none were admitted prior to surgery. The process map from interviews alone identified surgery rescheduling as a point of major variability; however, chart review revealed this was not as prominent a source of variability as pre-operative interventional cardiology review. CONCLUSIONS: Significant variation in the pre-operative evaluation and planning process for surgical atrial septal defect/ventricular septal defect patients was identified. If such process variation is widespread through CHD care, it may contribute to variations in outcome and cost previously documented within CHD surgery. Future research will focus on determining whether the variation is warranted or unwarranted, associated health outcomes and cost variation attributed to these variations in care processes.

Examining the Real-Life Journey of Individuals and Families Affected by Single-Ventricle Congenital Heart Disease.

Background The lifetime journey of patients with single-ventricle congenital heart disease is characterized by long-term challenges that are incompletely understood and still unfolding. Health care redesign requires a thorough understanding of this journey to create and implement solutions that improve outcomes. This study maps the lifetime journey of individuals with single-ventricle congenital heart disease and their families, identifies the most meaningful outcomes to them, and defines significant challenges in the journey. Methods and Results This qualitative research study involved experience group sessions and 1:1 interviews of patients, parents, siblings, partners, and stakeholders. Journey maps were created. The most meaningful outcomes to patients and parents and significant gaps in care were identified across the life journey. A total of 142 participants from 79 families and 28 stakeholders were included. Lifelong and life-stage specific journey maps were created. The most meaningful outcomes to patients and parents were identified and categorized using a "capability (doing the things in life you want to), comfort (experience of physical/emotional pain/distress), and calm (experiencing health care with the least impact on daily life)" framework. Gaps in care were identified and classified into areas of ineffective communication, lack of seamless transitions, lack of comprehensive support, structural deficiencies, and insufficient education. Conclusions There are significant gaps in care during the lifelong journey of individuals with single-ventricle congenital heart disease and their families. A thorough understanding of this journey is a critical first step in developing initiatives to redesign care around their needs and priorities. This approach can be used for people with other forms of congenital heart disease and other chronic conditions. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04613934.

Achieving Calm: A Study on the Health Care Experiences of People With Lived Experience of Homelessness in Central Texas.

The experiences of care of people with lived experience of homelessness are rarely embraced to change care delivery. We conducted qualitative group and one-on-one interviews utilizing experience group methodology with 27 people with lived experience of homelessness currently housed in one permanent housing community in central Texas. We analyzed data using an inductive thematic approach to identify shared obstacles and barriers to receiving health care. We then analyzed findings with the capability, comfort, and calm value framework to identify health outcomes that matter most to study participants. Poor access to care, discontinuities in care, distrust in providers, and confusing terminology were identified as the biggest barriers to health. The overwhelming majority of experiences reflected poor health outcomes of calm, the outcome of a health care experience that adds ease to one's life rather than logistical and administrative chaos. We propose three practical approaches to achieve calm for this population as follows: systems-level embracement of compassionate care, integration of relationship-based care navigation into all levels of care, and building efficient transportation into care design. We conclude that designing health care that works in the lives of people with lived experience of homelessness is critical to address the gaps in care that fuel the health disparity these individuals face compared to people without this lived experience.

What are People That Seek Care for Rotator Cuff Tendinopathy Experiencing in Their Daily Life?

This qualitative study sought to answer three questions: What is it like to live with rotator cuff tendinopathy? What are the barriers and facilitators of a healthy lifestyle with an aging shoulder? And, what are the outcomes that matter most to people seeking care for rotator cuff tendinopathy? Patients diagnosed with rotator cuff tendinopathy participated in group discussions using semi-structured guides that focus on diagnosis, daily experiences living with rotator cuff tendinopathy, goals, concerns, and clinical care experiences. A hybrid of initial inductive coding of themes and subsequent deductive consideration of these themes within the capability, comfort, and calm framework was utilized. Themes associated with rotator cuff tendinopathy were less restful sleep, difficulty with work and life transitions, loss of baseline abilities, and limitation in social roles in the capability realm; physical pain, despair, and loneliness in the comfort realm; and lack of direction or progress and feeling uncared for in the calm realm. Barriers identified included: the sense that rotator cuff tendinopathy is something correctable rather than age-associated and the sense that painful activities will make the tendinopathy worse (common misconceptions); tenuous relationships and limited trust with clinicians; loss of hope; and a sense that care is directionless. What matters most to a person seeking specialty care for shoulder pain are feeling that they are getting effective care and not being dismissed; maintaining meaningful activity and life roles; and replacing despair and frustration with hope and progress. Anticipating these needs may facilitate the design of more effective care models. Level of Evidence: N/A.

Outcomes That Matter Most to Young Adults Diagnosed with Cancer: A Qualitative Study.

Purpose: The purpose of this study is to provide insight for improvement in care for young adults diagnosed with cancer (YADC), by identifying underemphasized outcomes that strongly matter to YADC and the gaps in care that may limit achieving these outcomes for this unique and vulnerable population. Methods: Twenty-seven YADC, ages 25-39, participated in unstructured discussions focusing on topics relating to diagnosis, daily experiences living with cancer outside of the clinical setting, goals, concerns, and clinical care experience. Most participants engaged in group discussions using Experience Group methodology. Discussions were designed to collect information on three dimensions of health: capability, comfort, and calm (CCC). Data were coded using thematic analysis with NVivo software. Results: Several themes were identified within the CCC framework: capability in terms of confronting mortality at a young age, losing youthful identity and control over major life course decisions, especially fertility, and debilitating side effects, comfort in terms of the lack of understanding from peers and family and the fear of cancer recurrence, and calm was discussed as the difficulty of making complex medical decisions, financial toxicity, and loss of clinical support in survivorship. Conclusion: This research highlighted four care additions that are important for YADC: (1) concise and understandable education about their condition and treatment; (2) same-age support groups; (3) fertility support; and (4) better care transitions for life after cancer. These findings emphasize the importance of creating a collaborative, multidisciplinary care team and a holistic approach with care innovations that support clinicians to meet the unique needs of YADC.

Defining and Implementing Value-Based Health Care: A Strategic Framework.

Value in health care is the measured improvement in a person's health outcomes for the cost of achieving that improvement. While some descriptions conflate value-based health care and cost reduction, quality improvement, or patient satisfaction, those efforts-while important-are not the same as value, which focuses primarily on improving patient health outcomes. A decade of research into organizations that have achieved better outcomes while often lowering costs suggests a strategic framework for value-based health care implementation that starts with identifying and understanding a segment of patients whose health and related circumstances create a consistent set of needs. An interdisciplinary team of caregivers then comes together to design and deliver comprehensive solutions to address those needs. The team measures the health outcomes and costs of its care for each patient and uses that information to drive ongoing improvements. Care provided in this way aligns delivery with how patients experience their health and reconnects clinicians to their purpose as healers. It also asks physicians to think differently about their role within the larger care team and about the services that team provides. The authors suggest medical schools should incorporate education on the principles and implementation of value-based health care throughout the undergraduate medical curriculum to prepare their graduates to lead the transformation to value-based health care as they enter the physician workforce.

Seeking Consensus on the Terminology of Value-Based Transformation Through use of a Delphi Process.

Collaboration among diverse stakeholders involved in the value transformation of health care requires consistent use of terminology. The objective of this study was to reach consensus definitions for the terms value-based care, value-based payment, and population health. A modified Delphi process was conducted from February 2017 to July 2017. An in-person panel meeting was followed by 3 rounds of surveys. Panelists anonymously rated individual components of definitions and full definitions on a 9-point Likert scale. Definitions were modified in an iterative process based on results of each survey round. Participants were a panel of 18 national leaders representing population health, health care delivery, academic medicine, payers, patient advocacy, and health care foundations. Main measures were survey ratings of definition components and definitions. At the conclusion of round 3, consensus was reached on the following definition for value-based payment, with 13 of 18 panelists (72.2%) assigning a high rating (7- 9) and 1 of 18 (5.6%) assigning a low rating (1-3): "Value-based payment aligns reimbursement with achievement of value-based care (health outcomes/cost) in a defined population with providers held accountable for achieving financial goals and health outcomes. Value-based payment encourages optimal care delivery, including coordination across healthcare disciplines and between the health care system and community resources, to improve health outcomes, for both individuals and populations." The iterative process elucidated specific areas of agreement and disagreement for value-based care and population health but did not reach consensus. Policy makers cannot assume uniform interpretation of other concepts underlying health care reform efforts.

Value-based care in hepatology.

The migration from legacy fee-for-service reimbursement to payments linked to high-value health care is accelerating in the United States because of new legislation and redesign of payments from the Centers for Medicare and Medicaid Services. Because patients with chronic diseases account for substantial use of health care resources, payers and health systems are focusing on maximizing the value of care for these patients. Because chronic liver diseases impose a major health burden worldwide affecting the health and lives of many individuals and families as well as substantial costs for individuals and payers, hepatologists must understand how they can improve their practices. Hepatologists practice a high-intensity cognitive subspecialty, using complex and costly procedures and medications. High-value patient care requires multidisciplinary coordination, labor-intensive support for critically ill patients, and effective chronic disease management. Under current fee-for-service reimbursement, patient values, medical success, and financial success can all be misaligned. Many current attempts to link health outcomes to reimbursement are based on compliance with process measures, with less emphasis on outcomes that matter most to patients, thus slowing transformation to higher-value team-based care. Outcome measures that reflect the entire cycle of care are needed to assist both clinicians and administrators in improving the quality and value of care. A comprehensive set of outcome measures for liver diseases is not currently available. Numerous researchers now are attempting to fill this gap by devising and testing outcome indicators and patient-reported outcomes for the major liver conditions. These indicators will provide tools to implement a value-based approach for patients with chronic liver diseases to compare results and value of care between referral centers, to perform health technology assessment, and to guide decision-making processes for health authorities. This review sets the groundwork for implementing a value-based, patient-centered approach to chronic liver diseases within a health system. (Hepatology 2017;65:1749-1755).

Endocrine surgery as a model for value-based health care delivery.

BACKGROUND: Experts advocate restructuring health care in the United States into a value-based system that maximizes positive health outcomes achieved per dollar spent. We describe how a value-based system implemented by the University of California, Los Angeles UCLA Section of Endocrine Surgery (SES) has optimized both quality and costs while increasing patient volume. METHODS: Two SES clinical pathways were studied, one allocating patients to the most appropriate surgical care setting based on clinical complexity, and another standardizing initial management of papillary thyroid carcinoma (PTC). The mean cost per endocrine case performed from 2005 to 2010 was determined at each of three care settings: A tertiary care inpatient facility, a community inpatient facility, and an ambulatory facility. Blood tumor marker levels (thyroglobulin, Tg) and reoperation rates were compared between PTC patients who underwent routine central neck dissection (CND) and those who did not. Surgical patient volume and regional market share were analyzed over time. RESULTS: The cost of care was substantially lower in both the community inpatient facility (14% cost savings) and the ambulatory facility (58% cost savings) in comparison with the tertiary care inpatient facility. Patients who underwent CND had lower Tg levels (6.6 vs 15.0 ng/mL; P = 0.024) and a reduced need for re-operation (1.5 vs 6.1%; P = 0.004) compared with those who did not undergo CND. UCLA maintained its position as the market leader in endocrine procedures while expanding its market share by 151% from 4.9% in 2003 to 7.4% in 2010. CONCLUSIONS: A value-driven health care delivery system can deliver improved clinical outcomes while reducing costs within a subspecialty surgical service. Broader application of these principles may contribute to resolving current dilemmas in the provision of care nationally.

Creating a high-value delivery system for health care.

Health care reform that focuses on improving value enhances both the well-being of patients and the professional satisfaction of physicians. Value in health care is the improvement in health outcomes achieved for patients relative to the money spent. Dramatic and ongoing improvement in the value of health care delivered will require fundamental restructuring of the system. Current efforts to improve safety and reduce waste are truly important but not sufficient. The following three structural changes will drive simultaneous improvement in outcomes and efficiency: (1) reorganizing care delivery into clinically integrated teams defined by patient needs over the full cycle of care; (2) measuring and reporting patient outcomes by clinical teams, across the cycle of care and for identified clusters of medical circumstances; and (3) enabling reimbursement tied to value rather than to quantity of services. Many of these changes require physician leadership. We discuss steps on the journey to value-based care delivery.

How physicians can change the future of health care.

Today's preoccupation with cost shifting and cost reduction undermines physicians and patients. Instead, health care reform must focus on improving health and health care value for patients. We propose a strategy for reform that is market based but physician led. Physician leadership is essential. Improving the value of health care is something only medical teams can do. The right kind of competition--competition to improve results--will drive dramatic improvement. With such positive-sum competition, patients will receive better care, physicians will be rewarded for excellence, and costs will be contained. Physicians can lead this change and return the practice of medicine to its appropriate focus: enabling health and effective care. Three principles should guide this change: (1) the goal is value for patients, (2) medical practice should be organized around medical conditions and care cycles, and (3) results--risk-adjusted outcomes and costs--must be measured. Following these principles, professional satisfaction will increase and current pressures on physicians will decrease. If physicians fail to lead these changes, they will inevitably face ever-increasing administrative control of medicine. Improving health and health care value for patients is the only real solution. Value-based competition on results provides a path for reform that recognizes the role of health professionals at the heart of the system.

Redefining competition in health care.

The U.S. health care system is in bad shape. Medical services are restricted or rationed, many patients receive poor care, and high rates of preventable medical error persist. There are wide and inexplicable differences in costs and quality among providers and across geographic areas. In well-functioning competitive markets--think computers, mobile communications, and banking--these outcomes would be inconceivable. In health care, these results are intolerable, with life and quality of life at stake. Competition in health care needs to change, say the authors. It currently operates at the wrong level. Payers, health plans, providers, physicians, and others in the system wrangle over the wrong things, in the wrong locations, and at the wrong times. System participants divide value instead of creating it. (And in some instances, they destroy it.) They shift costs onto one another, restrict access to care, stifle innovation, and hoard information--all without truly benefiting patients. This form of zero-sum competition must end, the authors argue, and must be replaced by competition at the level of preventing, diagnosing, and treating individual conditions and diseases. Among the authors' well-researched recommendations for reform: Standardized information about individual diseases and treatments should be collected and disseminated widely so patients can make informed choices about their care. Payers, providers, and health plans should establish transparent billing and pricing mechanisms to reduce cost shifting, confusion, pricing discrimination, and other inefficiencies in the system. And health care providers should be experts in certain conditions and treatments rather than try to be all things to all people. U.S. employers can also play a big role in reform by changing how they manage their health benefits.