FRAME OF REFERENCE
ON MY MIND
Who Would Be Branded With Failure?
Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
T
here was no specialty of heart failure (HF) 35 years ago. When therapies were minimally effective, most cardiologists were equally qualified to deliver them. In the early 1980s, improved outcomes with cyclosporine led to reimbursement for cardiac transplantation. Although performed in >120 000 patients, its major epidemiological contribution may have been concentration of HF at centers where physiology, team management, and therapies could be explored. As the impact of therapies has extended the HF journey (Figure1), further intervention to decrease disease progression may now be hindered by the term “heart failure” itself.
Lynne Warner Stevenson, MD
ELONGATION OF THE HF JOURNEY In the early era, most patients presented with class IV symptoms and died of pump failure or sudden death within a year without transplantation. All HF was assumed to be low-ejection-fraction HF, with congestion and hypoperfusion inseparable and inevitable. When therapy was limited to digitalis and diuretics to treat symptoms, it was sufficient to classify HF by the New York Heart Association rating of symptom severity. The pivotal studies of SAVE (Survival and Ventricular Enlargement Trial) of patients after infarction2 and SOLVD (Studies of Left Ventricular Dysfunction)3 of asymptomatic patients showed us that we could inhibit the renin-angiotensin system to reduce the progression to HF, even before the typical HF syndrome. The need then arose to identify structural heart disease before HF symptoms, which led to the stage B designation from the 2005 American Heart Association/American College of Cardiology guidelines. This staging system further targeted disease progression by recommending continued therapy for stage C regardless of current symptoms. Since then, the concept of inexorable progression has been challenged by more potent and durable interventions to change the natural history of HF. We now follow many stage B patients who have not progressed. Some HF clinics report almost a third of their patients as “HF better ejection fraction,” previously symptomatic patients with an ejection fraction that has improved from 0.40 to 0.504 with parallel symptom improvement, often to class I. Some patients have symptomatic improvement to class I without an improved ejection fraction. Even with some limitation of activity, many patients who adhere to guideline-directed medical therapies and partner in their own fluid management can enjoy a long stable period with good quality of life.
The opinions expressed in this article are not necessarily those of the editors or of the American Heart Association. Correspondence to: Lynne Warner Stevenson, MD, Cardiovascular Division, Brigham and Women’s Hospital, 75 Francis St, Boston, MA 02492. E-mail [email protected]
IS THE “HEART FAILURE” LABEL HINDERING EFFECTIVE CARE?
Key Words: ◼ cardiomyopathies ◼ epidemiology ◼ heart failure ◼ prognosis
The term “heart failure” remains appropriate for hearts sick enough to be discarded for transplantation. “Heart failure” seems appropriate to describe decompensa-
© 2017 American Heart Association, Inc.
Circulation. 2017;136:1359–1361. DOI: 10.1161/CIRCULATIONAHA.117.029667
October 10, 2017
1359
Stevenson
Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
Figure. Comparison of the patient journeys with heart failure (HF) in the era early after approval of cardiac transplantation and in the current era realizing the benefit of therapies that have decreased HF progression and decreased sudden death (red arrows). Blue shaded areas encompass patients with typical HF syndromes. Pink shaded area includes patients for whom a neutral label such as “cardiomyopathy” might encourage emphasis on therapy to prevent disease progression. ADHF indicates acute decompensated heart failure; EF, ejection fraction; and RV, right ventricular. Adapted from Udelson and Stevenson1 with permission. © 2016, American Heart Association, Inc.
tion leading to hospitalization or refractory symptoms leading to pump failure death. However, many patients travel a long and interrupted journey after first diagnosis of a condition that could, but might not, end in HF death. Should the entire journey be labeled harshly as “heart failure”? For respiratory failure, patients go on a ventilator. For kidney failure, patients go on dialysis. For engine failure, the car needs to be towed. Are people confused when we apply the term “heart failure” differently? Our lexicon reveals misalignment between that term and the patients described by it. It is not surprising that we confuse patients with our explanations of “asymptomatic heart failure” or “heart failure with preserved ejection fraction,” or the vista of a long, active lifespan until death resulting from some other cause. The mission to prevent disease progression is undermined if directed at patients labeled as though failure has already occurred. How often have you heard patients
protest that they are “not failing”? Progression of disease may be most preventable in those with few or no symptoms, as shown 12 years after the SOLVD trials (Studies of Left Ventricular Dysfunction)3 and in the recent PARADIGM-HF trial (Prospective Comparison of ARNI With ACEI to Determine Impact on Global Mortality and Morbidity in Heart Failure).5 If these patients are unwilling to accept the label of “heart failure” for which these therapies are indicated, how will they engage in their own care? Similarly, patients recognized with genetic mutations or chemotherapy that places them at risk may reject being branded as already in an HF stage. This stigma has consequences not only for self-image and personal goals but also for families, employment, and insurance. Clinics labeled as “heart failure clinics” and the linked attachment of HF diagnosis codes may discourage entry of those patients who could benefit the longest. Any adjustment of terminology would inevitably threaten the status quo. Societies and journals include
1360
Circulation. 2017;136:1359–1361. DOI: 10.1161/CIRCULATIONAHA.117.029667
October 10, 2017
Who Would Be Branded With Failure?
WHAT IS THEIR CONDITION? Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
The HF clinical syndrome is the consequence, not a cause, of the disease. Many causes have been elucidated since the early era, including appreciation of the genetic contribution to nonischemic cardiomyopathy and the complex aspects of remodeling, hibernation, and mitral regurgitation in HF with coronary artery disease. Some new causes have emerged among the effective agents for cancer and rheumatologic disease. The thrust of treatments toward HF prevention now merits a different term for the target condition. Some languages use the term “insufficiency,” which offers more hope of adaptation than the term “failure” but still aims distal to prevention. “Cardiomyopathy” is a term once limited strictly to myocyte disease without structural heart disease, but common use now includes ischemic cardiomyopathy and valvular cardiomyopathy and does not require symptoms. Many of our effective therapies improve the function and environment of the abnormal myocyte, rendering “cardiomyopathy” a plausible common target. It has the advantage of already being in common use and descriptive of many points in the journey before the typical HF syndrome. Whether the underlying conditions are summarized as cardiomyopathy or another term, the term “heart failure” remains appropriate to describe transitions. The first hospitalization with decompensated HF clearly identifies an event warranting reassessment, and refractory HF is a transition toward transplantation, mechanical circulatory support, or ascending levels of palliation.
Circulation. 2017;136:1359–1361. DOI: 10.1161/CIRCULATIONAHA.117.029667
WHO WILL RISE TO CHALLENGE HF? There are currently ≈1000 to 1500 physicians and a similar number of dedicated nurses certified in the care of HF in the United States. We need more robust recruitment to provide and advance new cures for the ≥6 million patients. Not only patients but also their providers need to embrace the term for this condition. Has a taxi driver ever turned somber after learning that you are attending a meeting about HF? How often do you as an HF specialist reassure friends and relatives that what you do is often neither sad nor depressing? “Heart failure” connotes defeat that may limit our ability to attract new professionals and patients. We should brand ourselves, our therapies, and our patients carefully to extend the remarkable progress rather than enshrine the history of heart failure.
DISCLOSURES None.
AFFILIATION From Vanderbilt Heart and Vascular Institute, Nashville, TN.
FOOTNOTES Circulation is available at http://circ.ahajournals.org.
REFERENCES 1. Udelson J, Stevenson LW. The future of heart failure diagnosis, therapy, and management. Circulation. 2016;133:2671–2686. doi: 10.1161/CIRCULATIONAHA.116.023518. 2. Pfeffer MA, Braunwald E, Moyé LA, Basta L, Brown EJ Jr, Cuddy TE, Davis BR, Geltman EM, Goldman S, Flaker GC. Effect of captopril on mortality and morbidity in patients with left ventricular dysfunction after myocardial infarction: results of the Survival and Ventricular Enlargement Trial: the SAVE Investigators. N Engl J Med. 1992;327:669–677. doi: 10.1056/ NEJM199209033271001. 3. Jong P, Yusuf S, Rousseau MF, Ahn SA, Bangdiwala SI. Effect of enalapril on 12-year survival and life expectancy in patients with left ventricular systolic dysfunction: a follow-up study. Lancet. 2003;361:1843–1848. doi: 10.1016/S0140-6736(03)13501-5. 4. Stevenson LW. Heart failure with better ejection fraction: a modern diagnosis. Circulation. 2014;129:2364–2367. doi: 10.1161/CIRCULATIONAHA.114.010194. 5. McMurray JJ, Packer M, Desai A, Gong J, Lefkowitz MP, Rizkala AR, Solomon SD, Swedberg K, Zile MR. Neprilysin inhibition versus enalapril in heart failure. N Engl J Med. 2014;371:2336–2337.
October 10, 2017
1361
FRAME OF REFERENCE
“heart failure” in their names. Our field has been validated with appropriate subspecialty recognition and most recently with separate reimbursement for HF consultation within cardiology. However, none of the prominent patient advocacy groups clamor about HF, which affects >2% of the population, nor have celebrities taken the stage to champion earlier diagnosis and treatment of HF, not even ex–Vice President Dick Cheney, whose ventricular assist device and transplantation were prominent news. The status quo in fact represents remarkable underresponse to this prevalent and devastating condition. Would a different term inspire more champions?
Who Would Be Branded With Failure? Lynne Warner Stevenson Circulation. 2017;136:1359-1361 doi: 10.1161/CIRCULATIONAHA.117.029667 Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
Circulation is published by the American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231 Copyright © 2017 American Heart Association, Inc. All rights reserved. Print ISSN: 0009-7322. Online ISSN: 1524-4539
The online version of this article, along with updated information and services, is located on the World Wide Web at: http://circ.ahajournals.org/content/136/15/1359
Permissions: Requests for permissions to reproduce figures, tables, or portions of articles originally published in Circulation can be obtained via RightsLink, a service of the Copyright Clearance Center, not the Editorial Office. Once the online version of the published article for which permission is being requested is located, click Request Permissions in the middle column of the Web page under Services. Further information about this process is available in the Permissions and Rights Question and Answer document. Reprints: Information about reprints can be found online at: http://www.lww.com/reprints Subscriptions: Information about subscribing to Circulation is online at: http://circ.ahajournals.org//subscriptions/
ON MY MIND
Who Would Be Branded With Failure?
Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
T
here was no specialty of heart failure (HF) 35 years ago. When therapies were minimally effective, most cardiologists were equally qualified to deliver them. In the early 1980s, improved outcomes with cyclosporine led to reimbursement for cardiac transplantation. Although performed in >120 000 patients, its major epidemiological contribution may have been concentration of HF at centers where physiology, team management, and therapies could be explored. As the impact of therapies has extended the HF journey (Figure1), further intervention to decrease disease progression may now be hindered by the term “heart failure” itself.
Lynne Warner Stevenson, MD
ELONGATION OF THE HF JOURNEY In the early era, most patients presented with class IV symptoms and died of pump failure or sudden death within a year without transplantation. All HF was assumed to be low-ejection-fraction HF, with congestion and hypoperfusion inseparable and inevitable. When therapy was limited to digitalis and diuretics to treat symptoms, it was sufficient to classify HF by the New York Heart Association rating of symptom severity. The pivotal studies of SAVE (Survival and Ventricular Enlargement Trial) of patients after infarction2 and SOLVD (Studies of Left Ventricular Dysfunction)3 of asymptomatic patients showed us that we could inhibit the renin-angiotensin system to reduce the progression to HF, even before the typical HF syndrome. The need then arose to identify structural heart disease before HF symptoms, which led to the stage B designation from the 2005 American Heart Association/American College of Cardiology guidelines. This staging system further targeted disease progression by recommending continued therapy for stage C regardless of current symptoms. Since then, the concept of inexorable progression has been challenged by more potent and durable interventions to change the natural history of HF. We now follow many stage B patients who have not progressed. Some HF clinics report almost a third of their patients as “HF better ejection fraction,” previously symptomatic patients with an ejection fraction that has improved from 0.40 to 0.504 with parallel symptom improvement, often to class I. Some patients have symptomatic improvement to class I without an improved ejection fraction. Even with some limitation of activity, many patients who adhere to guideline-directed medical therapies and partner in their own fluid management can enjoy a long stable period with good quality of life.
The opinions expressed in this article are not necessarily those of the editors or of the American Heart Association. Correspondence to: Lynne Warner Stevenson, MD, Cardiovascular Division, Brigham and Women’s Hospital, 75 Francis St, Boston, MA 02492. E-mail [email protected]
IS THE “HEART FAILURE” LABEL HINDERING EFFECTIVE CARE?
Key Words: ◼ cardiomyopathies ◼ epidemiology ◼ heart failure ◼ prognosis
The term “heart failure” remains appropriate for hearts sick enough to be discarded for transplantation. “Heart failure” seems appropriate to describe decompensa-
© 2017 American Heart Association, Inc.
Circulation. 2017;136:1359–1361. DOI: 10.1161/CIRCULATIONAHA.117.029667
October 10, 2017
1359
Stevenson
Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
Figure. Comparison of the patient journeys with heart failure (HF) in the era early after approval of cardiac transplantation and in the current era realizing the benefit of therapies that have decreased HF progression and decreased sudden death (red arrows). Blue shaded areas encompass patients with typical HF syndromes. Pink shaded area includes patients for whom a neutral label such as “cardiomyopathy” might encourage emphasis on therapy to prevent disease progression. ADHF indicates acute decompensated heart failure; EF, ejection fraction; and RV, right ventricular. Adapted from Udelson and Stevenson1 with permission. © 2016, American Heart Association, Inc.
tion leading to hospitalization or refractory symptoms leading to pump failure death. However, many patients travel a long and interrupted journey after first diagnosis of a condition that could, but might not, end in HF death. Should the entire journey be labeled harshly as “heart failure”? For respiratory failure, patients go on a ventilator. For kidney failure, patients go on dialysis. For engine failure, the car needs to be towed. Are people confused when we apply the term “heart failure” differently? Our lexicon reveals misalignment between that term and the patients described by it. It is not surprising that we confuse patients with our explanations of “asymptomatic heart failure” or “heart failure with preserved ejection fraction,” or the vista of a long, active lifespan until death resulting from some other cause. The mission to prevent disease progression is undermined if directed at patients labeled as though failure has already occurred. How often have you heard patients
protest that they are “not failing”? Progression of disease may be most preventable in those with few or no symptoms, as shown 12 years after the SOLVD trials (Studies of Left Ventricular Dysfunction)3 and in the recent PARADIGM-HF trial (Prospective Comparison of ARNI With ACEI to Determine Impact on Global Mortality and Morbidity in Heart Failure).5 If these patients are unwilling to accept the label of “heart failure” for which these therapies are indicated, how will they engage in their own care? Similarly, patients recognized with genetic mutations or chemotherapy that places them at risk may reject being branded as already in an HF stage. This stigma has consequences not only for self-image and personal goals but also for families, employment, and insurance. Clinics labeled as “heart failure clinics” and the linked attachment of HF diagnosis codes may discourage entry of those patients who could benefit the longest. Any adjustment of terminology would inevitably threaten the status quo. Societies and journals include
1360
Circulation. 2017;136:1359–1361. DOI: 10.1161/CIRCULATIONAHA.117.029667
October 10, 2017
Who Would Be Branded With Failure?
WHAT IS THEIR CONDITION? Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
The HF clinical syndrome is the consequence, not a cause, of the disease. Many causes have been elucidated since the early era, including appreciation of the genetic contribution to nonischemic cardiomyopathy and the complex aspects of remodeling, hibernation, and mitral regurgitation in HF with coronary artery disease. Some new causes have emerged among the effective agents for cancer and rheumatologic disease. The thrust of treatments toward HF prevention now merits a different term for the target condition. Some languages use the term “insufficiency,” which offers more hope of adaptation than the term “failure” but still aims distal to prevention. “Cardiomyopathy” is a term once limited strictly to myocyte disease without structural heart disease, but common use now includes ischemic cardiomyopathy and valvular cardiomyopathy and does not require symptoms. Many of our effective therapies improve the function and environment of the abnormal myocyte, rendering “cardiomyopathy” a plausible common target. It has the advantage of already being in common use and descriptive of many points in the journey before the typical HF syndrome. Whether the underlying conditions are summarized as cardiomyopathy or another term, the term “heart failure” remains appropriate to describe transitions. The first hospitalization with decompensated HF clearly identifies an event warranting reassessment, and refractory HF is a transition toward transplantation, mechanical circulatory support, or ascending levels of palliation.
Circulation. 2017;136:1359–1361. DOI: 10.1161/CIRCULATIONAHA.117.029667
WHO WILL RISE TO CHALLENGE HF? There are currently ≈1000 to 1500 physicians and a similar number of dedicated nurses certified in the care of HF in the United States. We need more robust recruitment to provide and advance new cures for the ≥6 million patients. Not only patients but also their providers need to embrace the term for this condition. Has a taxi driver ever turned somber after learning that you are attending a meeting about HF? How often do you as an HF specialist reassure friends and relatives that what you do is often neither sad nor depressing? “Heart failure” connotes defeat that may limit our ability to attract new professionals and patients. We should brand ourselves, our therapies, and our patients carefully to extend the remarkable progress rather than enshrine the history of heart failure.
DISCLOSURES None.
AFFILIATION From Vanderbilt Heart and Vascular Institute, Nashville, TN.
FOOTNOTES Circulation is available at http://circ.ahajournals.org.
REFERENCES 1. Udelson J, Stevenson LW. The future of heart failure diagnosis, therapy, and management. Circulation. 2016;133:2671–2686. doi: 10.1161/CIRCULATIONAHA.116.023518. 2. Pfeffer MA, Braunwald E, Moyé LA, Basta L, Brown EJ Jr, Cuddy TE, Davis BR, Geltman EM, Goldman S, Flaker GC. Effect of captopril on mortality and morbidity in patients with left ventricular dysfunction after myocardial infarction: results of the Survival and Ventricular Enlargement Trial: the SAVE Investigators. N Engl J Med. 1992;327:669–677. doi: 10.1056/ NEJM199209033271001. 3. Jong P, Yusuf S, Rousseau MF, Ahn SA, Bangdiwala SI. Effect of enalapril on 12-year survival and life expectancy in patients with left ventricular systolic dysfunction: a follow-up study. Lancet. 2003;361:1843–1848. doi: 10.1016/S0140-6736(03)13501-5. 4. Stevenson LW. Heart failure with better ejection fraction: a modern diagnosis. Circulation. 2014;129:2364–2367. doi: 10.1161/CIRCULATIONAHA.114.010194. 5. McMurray JJ, Packer M, Desai A, Gong J, Lefkowitz MP, Rizkala AR, Solomon SD, Swedberg K, Zile MR. Neprilysin inhibition versus enalapril in heart failure. N Engl J Med. 2014;371:2336–2337.
October 10, 2017
1361
FRAME OF REFERENCE
“heart failure” in their names. Our field has been validated with appropriate subspecialty recognition and most recently with separate reimbursement for HF consultation within cardiology. However, none of the prominent patient advocacy groups clamor about HF, which affects >2% of the population, nor have celebrities taken the stage to champion earlier diagnosis and treatment of HF, not even ex–Vice President Dick Cheney, whose ventricular assist device and transplantation were prominent news. The status quo in fact represents remarkable underresponse to this prevalent and devastating condition. Would a different term inspire more champions?
Who Would Be Branded With Failure? Lynne Warner Stevenson Circulation. 2017;136:1359-1361 doi: 10.1161/CIRCULATIONAHA.117.029667 Downloaded from http://circ.ahajournals.org/ by guest on October 9, 2017
Circulation is published by the American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231 Copyright © 2017 American Heart Association, Inc. All rights reserved. Print ISSN: 0009-7322. Online ISSN: 1524-4539
The online version of this article, along with updated information and services, is located on the World Wide Web at: http://circ.ahajournals.org/content/136/15/1359
Permissions: Requests for permissions to reproduce figures, tables, or portions of articles originally published in Circulation can be obtained via RightsLink, a service of the Copyright Clearance Center, not the Editorial Office. Once the online version of the published article for which permission is being requested is located, click Request Permissions in the middle column of the Web page under Services. Further information about this process is available in the Permissions and Rights Question and Answer document. Reprints: Information about reprints can be found online at: http://www.lww.com/reprints Subscriptions: Information about subscribing to Circulation is online at: http://circ.ahajournals.org//subscriptions/
