Editorial Activities Worth Living For Call to Action Beyond Prognosis Eldrin F. Lewis, MD, MPH


iven the advances in the treatment options for chronic heart failure (CHF), the estimated 5 million people in the United States living with CHF have realized gradual improvements in their median life expectancy.1 Expectantly, there has been an increased focus on how well these patients live in addition to their longevity. The measurements of the wellness of patients include both patient-reported outcome tools and provider-based assessments. The model that links disease burden to these patient-centered outcome measures is well established in the literature2 and serves as the basis for novel interventions to improve these outcomes. Activities of daily living (ADLs) often involve many factors that are intermediate variables in the determinants of health-related quality of life and are often taken for granted when not evaluated in the context of disease burden. Despite these ADLs often being differentially influenced by the specific disease and the associated symptoms, patients may have impairments in their ability to perform because of factors unrelated to the specific disease. Although ADLs are important in clinical management, the focus on measurements as well as interventions to improve these important tasks is often assessed by physical and occupational therapist, nurses, social workers, and care coordinators with less attention by physicians.

Article see p 261 There are many valid and reliable instruments used to measure ADLs in research studies and clinical care. The most widely used is the Katz Index of Independence in ADLs, a 6-item instrument that assesses independence with bathing, dressing, toileting, transferring, continence, and feeding.3,4 Scores range from 0 to 6 with a higher score representing more independence and has recently been demonstrated to be prognostically important in patients with CHF.5 The Lawton Instrumental ADLs is a more complex instrument that assesses 8 domains of ADLs in depth addressing the ability of patients to function independently with scores ranging from 0 to 8 (higher score better).6 The Duke Activity Status Index is a 12-item instrument that determines functional status and ADLs measuring personal care, ambulation, house work and

The opinions expressed in this article are not necessarily those of the editors or of the American Heart Association. From the Cardiovascular Division, Brigham and Women’s Hospital, Boston, MA. Correspondence to Eldrin F. Lewis, MD, MPH, Cardiovascular Division, Brigham and Women’s Hospital, 75 Francis St, Boston, MA 02115. E-mail [email protected] (Circ Heart Fail. 2015;8:231-232. DOI: 10.1161/CIRCHEARTFAILURE.115.002064.) © 2015 American Heart Association, Inc. Circ Heart Fail is available at http://circheartfailure.ahajournals.org DOI: 10.1161/CIRCHEARTFAILURE.115.002064

yard work, sexual relations, and recreational activities and scores range from 0 to 58, with higher score representing better functioning.7 The Duke Activity Status Index has been established as a valid measure in CHF populations and lower scores are associated with worse prognosis.8,9 The article by Dunlay et al10 in this issue of Circulation: Heart Failure extends the literature in this important field. It is a prospective study of 1128 ambulatory and hospitalized patients in Minnesota with CHF, enrolled between 2003 and 2012, which characterized patient difficulties with 9 distinct basic and instrumental ADLs using a binary tool. They demonstrated in an older population (mean age, 75 years) with CHF that >50% died during the mean follow-up of 3.2 years. Severe difficulty with ADLs (defined as difficulties with eating, dressing, and toileting) was associated with a 55% 2-year rate of death from any cause in comparison with a rate of 21% for those patients with minimal/no limitations. Multivariable models demonstrated consistent increased risk for death and hospitalizations among those with more impairment in ADLs. Several key findings emerged. First, 428 (41%) of patients were not limited with regards to any of the 9 ADLs. Although the multivariable model included several important covariates, there was no adjustment for the underlying cause of the ADLs or the New York Heart Association functional class. These conditions may independently influence prognosis and hospitalizations. The lack of a cohort of young patients limits the generalizability of the findings, as ADLs may be different for young versus older patients with CHF. Most importantly, the ability to perform ADLs is a complex process that involves the entire spectrum of patient-reported outcomes, many of which have been proven to be independent predictors of mortality and hospitalizations such as health-related quality of life,11 frailty,12 and optimism.13 Adjustment for these other key factors with the addition of emotional/social support and expectations would enable the identification of the incremental benefit of assessments of patient limitations with ADLs. The final model seemed to be more predictive of noncardiovascular hospitalization than cardiovascular hospitalization, adding support to the notion that factors other than CHF may link ADLs to outcomes. These issues must be placed in correct context to mitigate the risk to these vulnerable patients. Several key implications that may be helpful for the clinician emerge from this article. Routine assessments of ADLs should be considered as we devise strategies to improve health-related quality of life. First, these assessments could occur during clinic visits with questionnaires or could occur before the clinic visit using portals via the clinic’s electronic medical records system. Second, there needs to be a better understanding of why these limitations of ADLs are associated with worse outcomes. Although the association between

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232  Circ Heart Fail  March 2015 ADLs inabilities and hospitalizations is straightforward, the risk for mortality is not as clear. A better understanding of the links between ADLs and mortality will enable targeted therapies that may attenuate this risk. Finally, this adds another prognostic tool that can be used by clinicians as we provide guidance into complex shared decision making, especially among those patients with greater comorbidities who are facing high-risk surgeries and procedures. The future is now for incorporation of ADLs assessment in CHF management, especially as we have often moved beyond paper instruments to intermittently measure these data. The use of applications for smart phones may allow for routine assessment of exercise, speed of gait, and steps per day and this tool could gather data daily and use it for biofeedback to the patient and to assist clinicians in management. These smartphones may also be used to periodically ask patients to rate their limitations and attempt correlations with background collected data and clinical data points. Moreover, the use of electronic medical records should enable clinicians to integrate all data that measure key components of patient-centered outcomes, including ADLs. This will provide a comprehensive assessment for the patient and identify potential targets for improvements across the spectrum from disease-modifying therapy, symptom burden, functional capacity, health-related quality of life, and the overarching ADLs. As we move forward into the era of big data and electronic medical records, all providers need to work diligently to routinely measure these important patient-reported outcomes and to devise novel strategies to improve these outcomes. We need to move beyond only ascertainment of risk with the use of these measures in future publications. Instead, we must target patients with these limitations and then actively reduce nonfatal and fatal events among them with systematic measurements of these improvements. That success will allow us to achieve the ultimate goal of CHF management to help our patients live longer and better.

Disclosures None.

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Activities Worth Living For: Call to Action Beyond Prognosis Eldrin F. Lewis Circ Heart Fail. 2015;8:231-232; originally published online February 25, 2015; doi: 10.1161/CIRCHEARTFAILURE.115.002064 Circulation: Heart Failure is published by the American Heart Association, 7272 Greenville Avenue, Dallas, TX 75231 Copyright © 2015 American Heart Association, Inc. All rights reserved. Print ISSN: 1941-3289. Online ISSN: 1941-3297

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Activities worth living for: call to action beyond prognosis.

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