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 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).
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.
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
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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
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