Working Group on Patient-Centered Research in Valvular Heart Disease

The NHLBI convened a Working Group on Patient-Centered Research in Valvular Heart Disease on July 9-10, 2019, in Bethesda, Maryland. The goals of the Working Group were to identify patient-centered research questions in valvular heart disease (VHD), to identify gaps in patient-oriented information and effective aids for shared decision making, and to identify barriers to patient-centered VHD research. The Working Group chose to frame the discussion as a patient journey from diagnosis to long-term management:

• Screening and Diagnosis. Screening for VHD often relies on auscultation, listening to heart sounds with a stethoscope, but both the practice and the effectiveness are inconsistent. Echocardiography is the primary method to diagnose VHD, but it requires specialized expertise and remains comparatively expensive. Research opportunities include the development and validation of optimal algorithms for screening and surveillance that consider the clinical history and risk factors of individual patients as well as practical implementation challenges.
• Access to Care. Clinical guidelines recommend that patients with VHD be treated in specialized centers of excellence. However, patients from rural areas may have less access to such centers, particularly for long-term follow-up. In addition, referral patterns and treatment efficacy may be different for female, minority, and Medicaid and uninsured patients. Research opportunities include efforts to validate the contention that concentration of clinical expertise in specialized centers of excellence actually provides better long-term care and to find ways of implementing quality care more widely and equitably.
• Pre-Intervention. Therapy for VHD consists of surgical, or increasingly transcatheter, valve repair or replacement, because there remain no medical therapies proven to prevent, slow, or reverse primary VHD. Research opportunities include efforts to translate promising results from basic research to clinical application and to explore medical therapy for underlying ventricular dysfunction and other comorbidities that ultimately hasten the need for intervention.
• Physician Decision-Making. Clinical guidelines help the physician determine the timing, feasibility, and approach to intervention for VHD. Research opportunities include efforts to develop best practices in each of these areas following the advent of transcatheter therapy, and to develop risk models for long-term outcomes of primary and adjunctive intervention to help physicians determine if the proposed intervention is appropriate in light of the patient’s goals and preferences.
• Patient Decision-Making. Until recently, patients with VHD had only one decision: surgery or no surgery. With the advent of alternative therapies, research opportunities include efforts to develop and validate tools for shared decision-making in VHD, and to explore the link between shared decision-making and the overall experience of the patient, which, if favorable, can reduce stress and anxiety and contribute to better long-term outcomes. Another research opportunity includes how to implement shared decision-making in clinical practice.
• Post-Intervention. Continuity of care and seamless management following intervention are central to ensuring that patients derive the expected benefits. Research opportunities include efforts to identify effective strategies for discharge planning that address an individual patient’s vulnerabilities and to develop and implement novel approaches for home-based rehabilitation. Other opportunities include efforts related to understanding why residual heart failure symptoms persist for some patients even after intervention for VHD, and how these symptoms might be prevented or mitigated.

The Working Group also discussed the role of clinical trials in VHD and barriers to patient-centered research.

Publication

The Working Group published a formal report, which includes an overview of the field and an expanded list and rationale for the identified research opportunities, in Lindman, et al, Priorities for Patient-Centered Research in Valvular Heart Disease: A Report From the National Heart, Lung, and Blood Institute Working Group. J Am Heart Assoc. 2020 May 5;9(9):e015975. doi: 10.1161/JAHA.119.015975. Epub 2020 Apr 24. PMID: 32326818; PMCID: PMC7428554 [https://www.ahajournals.org/doi/10.1161/JAHA.119.015975].

Working Group Members

Chair:

• Catherine Otto, MD, University of Washington

Members:

• Suzanne Arnold, MD, MHA, Saint Luke’s Mid-America Heart Institute
• Rodrigo Bagur, MD, PhD, Western University, Ontario
• Megan Coylewright, MD, MPH, Dartmouth-Hitchcock Medical Center
• Judy Hung, MD, Massachusetts General Hospital
• Sandra Lauck, PhD, RN, University of British Columbia
• Brian Lindman, MD, MSc, Vanderbilt University
• Jason Wasfy, MD, MPhil, Massachusetts General Hospital
• Lindsay Clarke, JD, Alliance for Aging Research
• Susan Peschin, MHS, Alliance for Aging Research
• Lisa Tate, Heart Valve Voice – US

NHLBI Staff:

• Frank Evans, PhD
• Vandana Sachdev, MD