School of Nursing Assistant Professor Jill Quinn, Ph.D., R.N., Presents at American Heart Association Meeting November 16

Findings Show Importance of Symptom Recognition by Patients and Family Caregivers

November 15, 2010

UR School of Nursing assistant professor Jill Quinn, Ph.D., R.N., C.S.-A.N.P., gives her presentation: “Recognition of Worsening Heart Failure Symptoms by Patients and their Caregivers Impacts Decision to Contact Providers,” Nov. 16 at the AHA annual meeting in Chicago, Ill.

For more than 5 million Americans diagnosed with heart failure – most of them elderly – monitoring and managing their chronic condition can be a full-time job. While adhering to lifestyle changes and strict medication regimens, they also need to be keenly attentive to the often subtle symptoms that their condition may be getting worse – such as swelling, weight gain, fatigue, shortness of breath and confusion. 

Because changes in symptoms can happen gradually, knowing when to contact a healthcare provider is not easy. Failing to do so soon enough, so that symptoms can be controlled safely at home, may be one of the reasons heart failure is the leading cause of hospitalization in the United States, claiming the lives of more than 300,000 Americans each year.

With a grant from the American Heart Association (AHA), Jill Quinn, Ph.D., R.N. C.S.-A.N.P., assistant professor at the University of Rochester School of Nursing, has devoted many years to researching this topic. Her ongoing work explores a variety of factors that influence heart patients’ decisions to seek medical care, including symptom perception, quality-of-life perception and depression. Strengthened and inspired by her personal experience as caregiver for her elderly mom, Quinn has also looked at the integral part family caregivers/significant others play in their loved one’s care and decision-making.

On Nov. 16, Quinn presents the most recent piece of her findings at the AHA Annual Meeting in Chicago, Ill. Although more research is needed in order to conclude that earlier symptom recognition by heart patients and caregivers would in fact reduce hospitalizations, Quinn’s findings do show that symptom recognition by heart patients and their family caregivers, together, has a measurable impact on their decision to contact their health care providers.

“Patients and caregivers who recognized worsening symptoms together, and believed there could be consequences to those symptoms, were more likely to contact their providers than those who did not,” said Quinn. “To me this is another piece of the puzzle that shows we need to keep digging deeper about how these close patient-caregiver relationships shape patient decisions and ultimately may affect outcomes.”

Quinn’s study involved interviewing 233 patient subjects hospitalized for worsening heart failure and 146 caregivers/significant others. They were interviewed before leaving the hospital to determine if, why, and when they contacted their primary medical providers before coming to the hospital. They also answered specific symptom-recognition questions. The survey results point to a high correlation in the perceptions and actions of both patients and caregivers. They also show that recognition of symptoms -- and their belief that there could be life-threatening consequences if they did not seek care -- had the biggest impact on the decision to contact their providers.

“More research in this area is needed to determine if earlier symptom recognition by heart failure patients and their caregivers, and more timely contact with the providers, would actually prevent or reduce hospitalizations for this population,” she said. “Likewise, additional research will help inform the way we can improve symptom education, management, communication and support to this population, and ultimately improve their outcomes.”

Quinn looks forward to continuing her research in this area, which includes ongoing collaboration with her colleagues at the UR Medical Center and in the Computer Science department to develop a computerized conversational system that would give patients 24-hour assistance in monitoring their symptoms from home. Drawing upon input from experienced nurse practitioners, the technology would help heart failure patients receive prompt answers to questions and manage their symptoms at home, and complement the role of the nurses managing their care.

Together with School of Nursing assistant professor Irena Pesis-Katz, Ph.D., Quinn is working to obtain research funding for a large-scale study of the role formal caregivers play in the symptom recognition and management of heart failure patients who reside in nursing homes. The research would include data from 1,500 nursing homes across the country.

“People living with heart failure need our support,” said Quinn. “Controlling their condition involves huge lifestyle changes that can be especially hard for older people who may live alone, have memory loss or loss of mobility. The goal of all of my work is to give heart failure patients the assistance they need to monitor their health, so they can make better choices, avoid or delay hospitalizations and improve the quality of their lives.”

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Christine Roth
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