Value-Based Care and Patient Outcome Measures, with Focus on Chronic Kidney Disease (CKD), Congenital Heart Disease, and Stroke

ICHOM defines several patient-centered outcome measure in relation to value-based care. Family sets of outcome measures in several frontiers of medicine are tailored to specific conditions and address the essential aspects of quality, patient-centeredness, informed decision making, and data-based insights. Three important conditions where outcome measures promote value-based care are discussed i.e. congenital heart disease, stroke, and chronic kidney disease.

Geography: United States; Focus Area: Outcome measures in value-based care

The International Consortium for Health Outcomes Measurement (ICHOM) defines patient-centered outcome measures, drives adoption, and reports measures worldwide to enhance value-based care (Porter, 2019). Such a definition of outcomes enables patients to inquire regarding “meaningful outcomes” and enables “data-driven answers“ for doctors. Outcome measures promote several essential aspects of value-based care including quality improvement (performance evaluation of physicians on a global basis, learning opportunities, and care improvement), informed decision-making (patient autonomy in choosing physicians and appropriate treatment), and reduced costs (high quality care and service-based costs).

Patient-centered outcome measures defined by ICHOM are rolled out as family of sets, for several categories including congenital anomalies, cardiometabolic, neurology, oncology, renal and urogenital, maternal and child health, gastrointestinal, infectious disease, mental health, life course, neurology, musculoskeletal, and ophthalmological. Standardized patient-centered outcome measurement sets consist of state-of-the-art  reviews specific to the condition, covering context-specific areas including burden of care, survival, patient-centered well-being, and treatment specific outcomes to name a few (Porter, 2019). The following article discusses the organization of standardized outcome measures for chronic kidney disease (CKD), congenital heart disease, and stroke validated by an interdisciplinary and geographically distributed team.

Outcome Measures of Chronic Kidney Disease

Chronic kidney disease (CKD) has a high prevalence (8%-16% in the general population) and leads to high costs of healthcare, poor health-related quality of life (QoL), and adverse health outcomes (Verberne et al., 2019). It contributes towards four main communicable diseases i.e. cancer, chronic respiratory disease,  diabetes, and cardiovascular disease. 

The working group for CKD outcome measures consisted of 22 members from 9 countries (including CKD registry experts, clinicians such as transplant surgeons and nephrologists, kidney care providers, epidemiologists, and research scientists). 76 outcome measures were identified after surveying literature systematically, gaining input from patient advisory groups, and assessing registries. Thereafter, 19 outcome domains were identified - 9 for CKD patients and 10 for treatment-specific groups. The outcome measures are set up for multiple treatment approaches including transplant, conservative care, pre-RRT, peritoneal dialysis, and hemodialysis. The outcome measures covered for CKD are related to patient-reported health and wellbeing, survival, burden of care, and treatment-specific outcomes (ICHOM, 2023a; Verberne et al., 2019). 

• The evaluations for pain, fatigue, health-related QoL (HRQoL), and physical function come under patient-reported health and well-being. 
• As part of survival, clinicians measure vital status. 
• Cardiovascular events and hospitalizations are measures for burden of care. 
• Finally, treatment specific outcomes include kidney allograft survival, malignancy, vascular access survival, renal function or eGFR, and peritoneal dialysis modality survival. 

CKD requires outcome measures as there is no standardized approach to report CKD outcomes of care. Biochemical markers are collected for patients, however, HRQoL measures are recorded rarely. The measures were defined with the objective of improving care quality through the use of “identical, meaningful, and patient-relevant” care outcomes in routine clinical practice (Verberne et al., 2019).

Promotion: Quality of Life: The Assessment, Analysis and Reporting of Patient-reported Outcomes 3rd Edition, Kindle Edition by Peter M. Fayers (Author), David Machin (Author) 

     

Outcome Measures of Stroke

The ICHOM patient-centered outcome measures for stroke include the components of mood and cognitive function, social participation and communication, fatigue and pain, self care and grooming, feeding, and mobility (ICHOM, 2021). Outcome measures for stroke are designed for four treatment approaches - Thrombectomy, IV Thrombolysis, Procoagulant Reversal Therapy, and Hemicraniectomy. The treatment variable measured is Symptomatic Intracranial Hemorrhage. In terms of survival and disease and control, guidelines for clinicians are defined for report of new stroke within 90 days after stroke discharge, vital status, and smoking cessation. Patient reported health status is measured in terms of motor functioning, non-motor functioning, cognitive and psychiatric functioning, general health status, social functioning, and health-related quality of life (HRQoL) (ICHOM, 2023b). 

The international standard set of patient-centered outcome measures for stroke (broadly, disease control, survival, long-term life quality, and treatment complications) are designed to assess value in stroke management and quality rather than cost. Stroke outcome measures address the growing health concerns globally including disparities with respect to low-income countries and reduce burden on the society (Salinas et al., 2016). The team of clinical experts specializing in stroke registers, outcomes, epidemiology, global health, and rehabilitation, after arriving at an inclusion and exclusion criteria, defined several outcomes in specific domains to be implemented in different healthcare settings to promote equitable, effective, value-based, and patient-centered care globally.

Researchers further studied psychometric properties of patient reported outcome measures (PROMs) as one of the domains of health-related quality of life (HRQoL) (Philipp et al., 2021). PROMs measure the health status of patients through an assessment of health domains such as mental well-being, psychosocial functioning, functional impairment, and quality of life. The assessment of PROMs has a positive impact on health outcomes, patient satisfaction, and process of care towards a paradigm of patient-centered care. 

The Patient Reported Outcomes Measurement Information System (PROMIS) is a standardized system for the evaluation of PROMs, designed by the National Institute of Health (NIH). The ICHOM Standard Set for Stroke (SSS) incorporates PROMIS-10 measures for an assessment of patient-reported health status based on a two-factor structure measuring global physical health score (GPH) and global mental health score (GMS) (Philipp et al., 2021). These measures may need further scrutiny and in-depth investigation to understand the consensus between clinician assessment and self-report. 

Outcome Measures of Congenital Heart Disease

Patient-centered outcome measures for congenital disease finalized by ICHOM are targeted at improving adult quality of life, pediatric quality of life, adult HRQoL or perceived health status, pediatric HRQoL, depression, anxiety, and productivity. The ICHOM set of patient-centered outcome measures for congenital heart disease include overall health (QoL, HRQoL / perceived health status), social health (financial burden, productivity), mental health (development, anxiety, depression), and physical health (arrhythmias, pregnancy, heart failure, vital status, activity level, growth, and development) (ICHOM Connect, 2023). The congenital heart disease outcome measurement set covers treatment approaches for mental health, physical health, social health, and overall health (ICHOM, 2023c).

The ICHOM congenital heart disease working group developed the “stakeholder-informed standard set of outcomes” for congenital heart disease to serve as benchmarks for health systems across the globe. A scoping review identified outcome domains from 42 registries. Guidelines were selected from three expert-panels - American Heart Association / American College of Cardiology Adult CHD Guidelines, American College of Cardiology / American Academy of Pediatrics Policy Statement for Care of Children with CHD, and European Society of Cardiology Guideline for Management of Group up CHD (Hummel et al., 2021). A literature review of more than 500 articles yielded outcome classifications in mental, physical, social, and overall health function,  which were stratified by current and future health state, clinical and patient reported outcomes, and effect modifiers, for adult and pediatric ages wherever possible. CHD being a chronic lifelong condition leads to acute healthcare utilization. The outcome measurement set serves as a guide to assist in clinical decision-making, making comparisons between health systems, and leveraging quality improvement, towards a culture of value-based care.

Therefore, ICHOM defines specific outcome measures for different conditions as a means to cut costs, improve quality of care, and promote patient-centered care towards a value-based care culture. Extensive research-driven family sets of outcome measures empowers clinicians with toolkits that optimize healthcare utilization and make informed decisions. 

Promotion: Measuring Health-Related Quality of Life in Children and Adolescents: Implications for Research and Practice Hardcover – 1 May 1998 by Dennis Drotar (Editor)

     

Keywords

shared decision making, healthcare quality, chronic kidney disease, patient-centered outcomes, Value-based care, congenital heart disease, patient reported outcome measures (PROMs), CKD, stroke

References

Hummel, K., Whittaker, S., Sillett, N., Basken, A., Berghammer, M., Chalela, T., Chauhan, J., Garcia, L. A., Hasan, B., Jenkins, K., Ladak, L. A., Madsen, N., March, A., Pearson, D., Schwartz, S. M., St Louis, J. D., van Beynum, I., Verstappen, A., Williams, R., & Zheleva, B. (2021). Development of an international standard set of clinical and patient-reported outcomes for children and adults with congenital heart disease: a report from the International Consortium for Health Outcomes Measurement Congenital Heart Disease Working Group. European Heart Journal - Quality of Care and Clinical Outcomes, 7(4), 354–365. https://doi.org/10.1093/ehjqcco/qcab009

ICHOM. (2023a). Chronic Kidney Disease. In ICHOM Connect. ICHOM. https://connect.ichom.org/wp-content/uploads/2023/03/06-Chronic-Kidney-Disease-Flyer.pdf

ICHOM. (2023b). Stroke. In ICHOM Connect. ICHOM. https://connect.ichom.org/wp-content/uploads/2023/03/28-Stroke-Flyer.pdf

ICHOM. (2023). Congenital Heart Disease. https://connect.ichom.org/wp-content/uploads/2023/03/31-Congenital-Heart-Disease-Flyer.pdf

ICHOM Connect. (2023). Congenital Heart Disease. Connect.ichom.org. https://connect.ichom.org/patient-centered-outcome-measures/congenital-heart-disease/

ICHOM. (2021). Stroke – ICHOM Connect. Connect.ichom.org. https://connect.ichom.org/patient-centered-outcome-measures/stroke/

Philipp, R., Lebherz, L., Thomalla, G., Härter, M., Appelbohm, H., Frese, M., & Kriston, L. (2021). Psychometric properties of a patient‐reported outcome set in acute stroke patients. Brain and Behavior, 11(8). https://doi.org/10.1002/brb3.2249

Porter, M. (2019). Value-Based Health Care - Institute For Strategy And Competitiveness. Hbs.edu; Harvard Business School. https://www.isc.hbs.edu/health-care/value-based-health-care/Pages/default.aspx

Salinas, J., Sprinkhuizen, S. M., Ackerson, T., Bernhardt, J., Davie, C., George, M. G., Gething, S., Kelly, A. G., Lindsay, P., Liu, L., Martins, S. C. O., Morgan, L., Norrving, B., Ribbers, G. M., Silver, F. L., Smith, E. E., Williams, L. S., & Schwamm, L. H. (2016). An International Standard Set of Patient-Centered Outcome Measures After Stroke. Stroke, 47(1), 180–186. https://doi.org/10.1161/strokeaha.115.010898

Verberne, W. R., Das-Gupta, Z., Allegretti, A. S., Bart, H. A. J., van Biesen, W., García-García, G., Gibbons, E., Parra, E., Hemmelder, M. H., Jager, K. J., Ketteler, M., Roberts, C., Al Rohani, M., Salt, M. J., Stopper, A., Terkivatan, T., Tuttle, K. R., Yang, C.-W., Wheeler, D. C., & Bos, W. J. W. (2019). Development of an International Standard Set of Value-Based Outcome Measures for Patients With Chronic Kidney Disease: A Report of the International Consortium for Health Outcomes Measurement (ICHOM) CKD Working Group. American Journal of Kidney Diseases, 73(3), 372–384. https://doi.org/10.1053/j.ajkd.2018.10.007

Interoperability and Care Coordination for Successful Transformation to Value-Based Care

Value-based care models can be implemented through a well-designed care coordination system that forms an efficient liaison between multiple stakeholders. Collaboration and patient preferences are important aspects of care coordination that supports multiple activities in a cohesive manner. Care coordination systems must be well-designed to promote safety, efficiency, and effectiveness. The article discusses care coordination measures proposed by the Agency for Healthcare Research and Quality, and explains the example of care coordination strategies for youth with traumatic brain injuries (TBI).

Geography: United States; Focus Area: The impact of care coordination on value-based care 

Value-based care models have been consistently promoted by the US department of health and human services, to address inherent flaws of the fee-for-service payments. In value-based care, providers are to achieve better outcomes at reduced costs by promoting high-quality care, care coordination, and a patient-centered approach (Office of Health Policy, ASPE, 2021).

The Inherent Demands of Value-Based Care Models

In a value-based care system, information must flow between multiple entities such as hospitals, community health centers, pharmacy, laboratory, school, and grocery (Office of Health Policy, ASPE, 2021). In such a system, patient perspectives precede care delivery, and patient needs, preferences, and values are discussed in a collaborative manner. Care providers are engaged especially in the case of vulnerable populations, complex chronic conditions, and frequent care transitions. On the data side, a care coordination approach requires information on patient preferences, social determinants of health (SDOH), and data interoperability.

Care Coordination as a Means of Supporting Value-Based Care

Care coordination leads to effective, appropriate, and safer care. Multiple approaches may be employed to achieve successful care coordination: medication management, teamwork, patient-centered medical home, care management, and health information technology (Agency for Healthcare Research and Quality, 2018). In a coordinated care system, multiple activities are supported such as accountability, communication, care transition, care planning, patient need assessment, monitoring and follow-up, aligning resources with patient and population needs, supporting patient self-management, and linking community resources. 

Promotion: Case Management and Care Coordination: Supporting Children and Families to Optimal Outcomes (SpringerBriefs in Public Health) Paperback – Import, 8 August 2014 by Debbie Stubbs (Author), Janet Treadwell (Author), Jeanne W. McAllister (Author), Rebecca Perez (Author), Ruth Buzi (Author), Susan Stern (Author)

   

Well Designed Care Coordination Systems

Care coordination must be well-designed and targeted at the right patients to improve outcomes of providers, patients, and payers. According to the Institute of Medicine (IoM), care coordination is associated with safety, effectiveness, and efficiency. Such a design requires overcoming disjointed systems and processes occurring in primary care and specialty sites, assisting patients, primary care physicians, and specialists understand referrals and appointments, and increasing efficiency (Agency for Healthcare Research and Quality, 2018).

Quality measures define the practice of care coordination. The care coordination quality measure for primary care (CCQM-PC) can be used to make an assessment of experiences of adults in primary care settings (by administering surveys) and fill gaps in care delivery (Agency for Healthcare Research and Quality, 2018). It builds a conceptual framework allowing assessment of patient perceptions of care quality and make improvements. The written and computer-assisted telephone survey are tools to understand patient preferences regarding health care to improve the care coordination for a primary care practice (Agency for Healthcare Research and Quality, 2018). CCQM-PC is part of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) family of measures designed to understand the relationship between care coordination and quality and outcomes. Information from surveys has an impact on care transition, care planning, and information sharing. Care coordination may be guided by the Care Coordination Measures Atlas, which contains instruments for care coordination measures for patient centered medical home, ambulatory care, elder care, community physicians, complex pediatric needs, and chronic illness.

Coordination Strategies for Youth with Traumatic Brain Injuries

Care coordination in pediatrics spans multiple institutions and systems. In the patient-centered medical home (PCMH), care coordination encompasses compassionate and team-based care, and informed care delivery among multiple stakeholders including social workers, community partnerships, educators, healthcare workers, families, and other service providers (Palusak et al., 2022). In the pediatric population, children with special healthcare needs (CSHCN) are at a high risk of emotional, physical, developmental, and social chronic illnesses, requiring competent, comprehensive care coordination and a multidisciplinary approach. Care coordination improves patient perception of care and eliminates adverse reactions, treatment delays, care fragmentation, missed appointments, and emergency department visits. 

Recent data disseminated by the Care Coordination Measures Atlas, National Health Academy for State health Policy, and Commonwealth Fund Report indicates that care coordination may improve outcomes for pediatric chronic illnesses. In this context, traumatic brain injury (TBI) is particularly relevant. TBI is a significant health burden in the pediatric population (Palusak et al., 2022). Deficits and disability following TBI may influence daily functioning and decrease in reported Quality of Life (QoL) depending on severity of injury. Coordination and standardization of care after TBI is important to achieve consistent referrals for rehabilitation and address unmet needs, caregiver stress, and adverse long-term outcomes.

Researchers carried out a scoping review to understand the impact of care coordination measures on the pediatric population post-TBI. The categories of reported outcomes included cost of care, parent and child quality of life, healthcare utilization measures, perception of care, and healthcare satisfaction. The implementation of care coordination demonstrated favorable outcomes: 

• Decreased the number of inpatient days (length of stay)

• Decrease in disease-related emergency department visits

• Reduced hospitalization and readmission rates

• Increased use of outpatient services as opposed to inpatient services

• Reduced use of inappropriate and duplicate services

• Shift towards primary pediatric services as opposed to specialty care

• Increased ease of access to services, decreased barriers and wait-times

• Unmet needs of children decreased in mental health, dental care, respite care, and therapy

• Creation and utilization of care plans with the involvement of family members increased awareness and satisfaction in a few cases

• Cost of care and out-of-pocket costs showed a decline

• A decrease in disease severity and symptoms was evident

• Child QoL increased, and in some instances caregiving-related burden showed a decline (physical strain, social restriction). However, overall parental burden remained the same

• Overall satisfaction and improved caregiver perception as a result of being connected to care coordinators

The research review on care coordination described above indicates an improvement in the long-term outcomes of children who sustained a TBI. Taken together with the quality measures proposed by Agency for Healthcare Research and Quality (AHRQ), care coordination can lead to care that is appropriate to the context, and effective as well as safe. Well-designed care coordination systems improve overall outcomes at a systemic level, and promotes the effective management of multiple activities among institutions, patients, providers, and community resources.

Promotion: Care Coordination: A Blueprint for Action for RNs Paperback – 30 January 2018 by Gerri Lamb (Editor), Robin Newhouse (Editor)

   

Keywords

readmission rates, institute of mediine, value-based healthcare, trauma-informed care, care coordination measures atlas, traumatic brain injury, AHRQ, length of stay, care coordination, TBI, quality of life, QoL

References

Agency for Healthcare Research and Quality. (2018). Care Coordination. Ahrq.gov. https://www.ahrq.gov/ncepcr/care/coordination.html

Office of Health Policy, ASPE. (2021). Supporting Value-Based Care Transformation through Interoperability and Care Coordination.

Palusak, C., Shook, B., Davies, S. C., & Lundine, J. P. (2022). A scoping review to inform care coordination strategies for youth with traumatic brain injuries: Care coordination personnel. International Journal of Care Coordination, 205343452110706. https://doi.org/10.1177/20534345211070647

How Far Have ACOs Taken Value-Based Care, and what to Expect in the Future

Timely and appropriate patient care is the hallmark of Accountable Care Organizations (ACOs). ACOs resolve common problems in healthcare delivery including duplication of services, fragmentation among providers, and medical errors. The proliferation of ACOs has been impeded by several barriers related to lack of education and incentives and difficulty with alternative payment models (APMs). Three new ACO models proposed by the American Hospital Association will increase growth in the coming year. The eventual goal to transition towards value-based services models will have a positive impact on performance and raise the chances of steering away from fee-for-service models.

Geography: United States; Focus Area: Performance of Accountable Care Organizations (ACOs)

According to the Centers for Medicare and Medicaid Services, an Accountable Care Organization (ACO) is a group of physicians, healthcare providers, hospitals that voluntarily provides coordinated care to Medicare patients. The goals of ACOs are to ensure that the “right care at the right time” is delivered to patients, and fragmentation between providers, duplication of services and medical errors are prevented (Centers for Medicare & Medicaid Services, 2021). ACOs receive a share in the Medicare savings program by spending wisely and providing high-quality care. 

In a report by the Medicare Payment Advisory Commission, four main barriers are associated with ACO implementation, which need to be resolved for the success of the ACO movement. First, beneficiaries need to be educated about the benefits of enrolling with an ACO. Second, ACOs need incentives to manage rising Medicare Part D expenses. Third, the financial incentives of hospitals need to be aligned with those of ACOs (obtaining savings from managing drug costs and hospital care). Fourth, ACOs need to review their payment for physicians rather than continuing to rely on the fee-for-service model, and derive value from alternative payment models (APMs) (Joszt, 2020).

Furthermore, the American Hospital Association, 70,000 care providers, physicians, and hospitals will collaborate and coordinate care for 13.2 million Medicare patients through three ACO models in 2023. Hagland (2023) informs that rolling out these models will raise chances of CMS achieving its goal of all Medicare enrollees entering into ACO to access their provider services. The models proposed by CMS for ACOs are (Hagland, 2023):

• Medicare Shared Savings Program (Shared Savings Program) - largest ACO initiative introduced by ACA with 456 ACOs and 10.9 million beneficiaries in 2023. New policy related to physician fee schedule are likely to increase participation in ACOs during 2024 and the future. The policies are likely to benefit underserved and rural areas, increase beneficiaries, and promote equity.

• Accountable Care Organization Realizing Equity, Access, and Community Health (ACO REACH) Model - aims to improve care quality through care coordination and increasing access to accountable care to the underserved population and home care. In 2023, 132 ACOs have the ACO REACH model with 2.1 million beneficiaries and 131,772 providers. 824 Rural Health Centers, Federally Qualified Health Centers, and Critical Access Hospitals will participate in the ACO REACH model in 2023 to address ethnic and racial disparities.

• Kidney Care Choices (KCC) Model - includes care coordination for stage 4 and 5 kidney disease and end-stage renal disease, increasing access to kidney transplant, delaying onset of dialysis. In 2023, 55% REACH ACOs have a self-reported status as provider organizations. In 2023, the KCC model will have 130 KCC entities, 249,983 beneficiaries, and the participation of 249,983 care providers, accounting for 87% increase in organizations and providers, and 62% increase in beneficiaries when compared to 2022.

Market analysts predict the growth in ACO participation, with further increase in growth by 2024. Greater interest in high risk models such as ACO REACH points at the need for more high-risk options under the Shared Savings program (The Regulatory Review, 2022). Greater participation in Shared Savings is expected as financial risk will be reduced, financial spending will be backed by relevant policies, and investment will be paid back through shared savings. The model will have several improvements including greater oversight, equity, patient protection, and provider governance.

Access to quality health services is still a matter of concern. Fee for service models are still in use and fail to provide adequate care. The value-based structure of ACOs will enable payment to providers based on health outcomes (Muhlestein et al., 2022). Regulatory reform may be required in the areas of developing primary care programs, comprehensive patient-centered care, cost reduction, quality improvement, improving coordination across health care programs, regulating data sharing for ACO coordination, decreasing barriers to rural provider participation, spending dollars for social services integration into ACOs, encouraging practice reform for health system change through state regulatory action, and making amendments to technical requirements for inadvertent noncompliance to facilitate transition to value-based payment models.

In future, the introduction of new models, regulatory reform, will facilitate the transition towards value-based service models. To adapt to the environment, organizations may need transformation in their business models. The involvement of CMS in introducing new program rules and benchmarks, driving adoption and performance, increase positive incentives to move towards value-based models and disincentives to steer away from fee-for-service models. 

Promotion: Accountable Care Organization ACO Complete Self-Assessment Guide Paperback – Import, 9 September 2017 by Gerardus Blokdyk (Author)

   

Keywords

racial disparities, value-based payment models, access, healthcare delivery, care model, community health, value-based healthcare, accountable care, ACOs, care coordination, equity, alternative payment models

References

Centers for Medicare & Medicaid Services. (2021). Accountable Care Organizations (ACOs). www.cms.gov. https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/ACO

Hagland, M. (2023). CMS Officials Announce ACO Participation Details, Associations Respond. Healthcare Innovation Group. https://www.hcinnovationgroup.com/policy-value-based-care/accountable-care-organizations-acos/article/21292938/cms-officials-announce-aco-participation-details-associations-respond

Joszt, L. (2020). The Future Success of ACOs Depends on Fixing Current Challenges. The American Journal of Accountable Care, 8(4). https://www.ajmc.com/view/the-future-success-of-acos-depends-on-fixing-current-challenges

Muhlestein, D., Saunders, R. S., Lesle, K. de, Bleser, W. K., & McClellan, M. B. (2022). Growth Of Value-Based Care And Accountable Care Organizations In 2022. Forefront Group. https://doi.org/10.1377/forefront.20221130.22253

The Regulatory Review. (2022). Reforming Accountable Care Organizations. www.theregreview.org. https://www.theregreview.org/2022/07/30/saturday-seminar-reforming-accountable-care-organizations/