NIH Stories of Discovery

While working as a pediatric nurse, Dr. Ann Marie McCarthy saw first-hand how distressing painful medical procedures are to young patients. Such procedures are common, with children in pediatric intensive care units experiencing 9 to 10 of them on average every day.

McCarthy is a professor and associate dean for research at the University of Iowa College of Nursing, with secondary appointments in the colleges of medicine and public health. The various roles she has had during her career, from staff nurse to nurse practitioner to psychologist to researcher, influenced her work and led her to her passion: identifying evidence-based methods to predict children’s distress during medical procedures and interventions to decrease that distress.

McCarthy and her team created the Distraction in Action Tool, a web-based tool for families and providers that will identify a child’s risk for distress and provide guidance on how to reduce that distress. The tool kit includes the predictive model, training videos, tips for parents and providers, individualized recommendations and distractors—links to books and games. McCarthy used results of several studies to develop the tool kit, including a behavioral analysis of what happens between a parent and child during a painful procedure. Along the way, her team developed a distraction coaching index and discovered genetic differences in how children feel pain when a topical anesthetic is used.

The Distraction in Action Tool is available on the University of Iowa Stead Family Children’s Hospital website, along with information and resources for parents.

The NIH Small Business Innovation Research (SBIR) program encourages high-risk, high-reward projects. NINR supported researcher, Dr. Kathryn Bowles and her colleagues at the University of Pennsylvania School of Nursing are an SBIR success story. The team developed technology to help identify patients who should receive post-acute care, thus helping to meet their needs after a hospital stay and ultimately reducing readmissions.

The NINR funded project started with the paper-based Discharge Decision Support System (D2S2), a tool that had the potential to improve health outcomes and quality of life. The D2S2 tool was further developed with a Phase 1 SBIR grant, embedded in three hospitals, and data were collected on thousands of patients. The D2S2 helped bring about a 35 percent reduction in 30-day readmissions and a 26 percent reduction in 60-day readmissions.

Dr. Bowles and her team are currently in Phase II of the SBIR award, where they are testing and refining the technology. Dr. Bowles has since attracted venture capital and co-founded a company to scale-up the technology and bring it to market.

The team recently published a journal article recapping their experience in taking nursing science technology to market, a success story that can help their peers better translate research to improve clinical care.

To learn more about Dr. Bowles' research, watch her NINR Director's Lecture below:

Dr. Marcia Holstad of the Emory University School of Nursing works to improve wellness in diverse populations living with HIV. Dr. Holstad developed the Keeping Healthy and Active with Risk Reduction and Medication Adherence (KHARMA) project, which demonstrated the value of group motivational interviewing for HIV+ women. Dr. Holstad also developed and validated a new way to measure HIV medication adherence — the Antiretroviral General Adherence Scale — and is currently testing an innovative method using a smartphone camera.

She continued her research with the LIVE Network, developing and testing a portable, music-enhanced audio self-management program to improve medication adherence and drug-related symptom management. Both the LIVE Network and KHARMA programs have been successfully integrated into research settings.

Begun in Atlanta, Project KHARMA has since been implemented internationally in Nigeria. Dr. Holstad has extended the use of motivational interviewing and has integrated it into an early palliative care intervention program, The Living Well Project, for persons with AIDS. The LIVE Network program was repackaged in a smartphone application as Music for Health and Dr. Holstad is currently testing its effectiveness. This NINR-supported project will test the app in several settings and sites in rural Georgia over a four-year period.

Dr. Holstad has continued her work with the Emory Center for AIDS Research, working as a sought-after research mentor to the next generation of nurse scientists while teaching and collaborating with international peers.  

Click on the sound files below to hear samples from Dr. Holstad's work.

All the Way:

That's My Motivation:

NINR-supported scientist Dr. Melissa Aldridge of New York’s Icahn School of Medicine at Mount Sinai has become nationally known for her research into the big data of hospice care in America.

Dr. Aldridge has studied how expanding the Medicare Hospice Benefit would impact Medicare costs and the structure and delivery of hospice and palliative care. She has analyzed national data on hospice characteristics, including hospice ownership and size, how characteristics have changed over time, and the impact of these changes on patient and family outcomes.

She also detailed the complexity of the hospice patient population, outlined the resource demands of hospices serving patients with multiple chronic diseases or conditions, and provided new insights into the patterns of hospice use including the timing of hospice enrollment and transitions in care at the end of life.

Her work examining the difficulties facing small, free-standing hospices in fully meeting patients’ wishes for palliative and hospice care was covered by the New York Times and JAMA Internal Medicine.

Dr. Aldridge’s work has also helped to draw public attention to the ongoing trend of non-profit Medicare-certified hospices closing or having withdrawn from the program and being replaced by for-profit hospices and the impact of this shift on a wide range of quality metrics.

Dr. Aldridge continues to study the impact of these changes on the quality of hospice care and patient outcomes through an NINR-supported project that takes a closer look at quality measures at hospices and their association with patient outcomes including hospitalization. 

The prevalence of chronic conditions such as asthma in underserved children and adolescents continues to increase. The development of self-management interventions and technologies for young people will advance the science of self-management and improve quality of life and health outcomes.

Controlling the Home Environment

Asthma Express (AEx) is a community and emergency department-based intervention for inner city children. To develop AEx, Dr. Arlene Butz of the Johns Hopkins University School of Medicine focused on children who had more than two emergency room visits and tested for exposure to tobacco smoke and allergens. Child exposure information was used to help the children’s caregivers to make changes in the home environment to reduce symptom days and emergency room visits, improve appropriate medication use, and increase caregivers’ quality of life.

Photo Caption: Scenes from an inner city where allergens and asthma triggers thrive. (Left) Peeling paint and mold on kitchen wall, (Middle) peeling paint and no window screen, (Right) and a typical row house with no play area and boarded up home next door that potentially houses mice, rats, and cockroaches. Images courtesy of Dr. Butz.

Device for Asthma Monitoring

Dr. Heykyun Rhee and her team at the University of Rochester School of Nursing created an automated device for asthma monitoring (ADAM). The wearable device (pictured, right) uses technology to monitor asthma symptoms continuously, objectively, and accurately, and to assist daily asthma management. This helped adolescents increase symptom awareness, improve self-management, and achieve control of their asthma. In another study, the team designed the Peer-led Asthma Self-Management Program for Adolescents (PLASMA). This interactive day camp gives teens opportunities to learn ways to manage their asthma from trained peer leaders with asthma.

As a clinical nurse specialist, Dr. Annette DeVito Dabbs of the University of Pittsburgh School of Nursing cared for patients with chronic cardiopulmonary conditions, focusing on improving post-surgery outcomes and quality of life for lung transplant recipients.

As an F31 pre-doctoral fellow, she studied symptoms of acute complications after transplant in the hope of identifying ways to improve self-monitoring, and expanded this work in her early mentored research through a series of individual research program grants. She designed and tested interventions to promote effective self-care among patients.

Image caption: A screenshot of the Pocket PATH® dashboard. Courtesy of Dr. DeVito Dabbs.

Her foundation in self-management and health information technology led Dr. DeVito Dabbs to develop, pilot, and conduct a clinical trial of the mobile app Pocket PATH® (Personal Assistant for Tracking Health) with lung transplant recipients. Her research has shown that Pocket PATH® users have higher rates of self-care behaviors and significantly better quality of life than controls.

Today, Dr. DeVito Dabbs continues to promote training and technology. In her role as the Director of a training center T32 grant, she mentors graduate students in technology research in chronic and critical illness and actively participates in interdisciplinary groups at the University of Pittsburgh Medical Center and Carnegie Mellon University.

With the help of interactive health tech like the Pocket PATH®, Dr. DeVito Dabbs and her team continue to study ways to leverage technology to promote self-management and quality of life among patients with chronic conditions.

Photo Caption (above): Animation showing a test of TigerPlace bed sensors. Courtesy of Dr. Rantz.

Transitions from different facilities can increase morbidity and mortality in older adults. In an effort to provide continuity, the nursing community has embraced the concept of aging in place (AIP).

Research has shown that changes in normal patterns of behavior can predict an approaching illness or a worsening chronic illness. This early warning can happen 10-14 days before clinical symptoms start. TigerPlace, a unique facility at the University of Missouri, is using technology to predict illness which can lead to early detection and treatment and help residents stay in their homes longer.

Sensors placed around the residents' apartments establish the normal patterns of daily life. These sensors can help show changes in behavior such as restlessness in bed, time spent in bed, general activities, and time away from the apartment. Nurse care coordinators and other clinicians can view reports of these changes and determine if the change is clinically relevant. 

Dr. Marilyn Rantz and her team at the University of Missouri's Sinclair School of Nursing are doing a randomized clinical trial with different populations to see if the sensors can work in other settings. The team is investigating whether the technology can be useful to prevent falls or detect problems like dementia or depression. To learn more about Dr. Rantz and her work on AIP, please visit: http://www.agingmo.com/.

A palliative approach that includes case management, education, and support can improve quality of life while living with cancer and its treatment. Dr. Marie Bakitas developed Project ENABLE (Educate, Nurture, Advise, Before Life Ends) first as a demonstration project and later in two randomized clinical intervention trials. This program incorporated the use of a nursing-led telehealth intervention provided along with usual ‘curative’ cancer care.

Newly diagnosed advanced cancer patients and their families received telephone-based coaching and support, ongoing assessments, skills training in problem-solving, advance care planning, symptom management, crisis preventions, and timely referrals to palliative and hospice care resources.

Taken together, the results from the ENABLE randomized trials demonstrated improved quality of life, lower depressed mood, and longer survival (compared with usual oncology care or delayed palliative care). Trends were noted in improved symptom intensity but no differences were seen in days in the hospital or ICU or emergency department visits. Importantly, this care model, which is uniquely suited to rural and low resource areas, demonstrates how palliative care services can be integrated into the community and the importance of empowering patients and their family caregivers to take an active role in their care.

Chronic wounds represent a growing public health challenge with high morbidity and mortality. Lack of public awareness as well as understanding of the mechanisms of wound healing both contribute to limited effective therapies. An aging population, growing rates of diabetes and obesity, and wound care of veterans have all underscored the importance of wound prevention and care in a variety of settings including hospitals, nursing homes, and communities.

Prevention

In a study of elderly nursing home residents who were at moderate or high risk of developing pressure ulcers (according to the Braden Scale), Dr. Nancy Bergstrom and colleagues at the University of Texas sought to determine how often residents should be repositioned in bed to prevent development of ulcers. In this study, the TURN study, residents were scheduled to be turned in bed at either 2-, 3-, or 4-hour intervals, and residents were cared for on high density, foam mattresses. They found no difference in the number of pressure ulcers that developed regardless of whether the patients were turned at 2-, 3-, or 4-hour hour intervals. While more research is needed, this finding could shatter a 50-year old tradition of every 2-hour turning, and may help residents obtain more uninterrupted sleep and reduce caregiver injury. Important next steps for the TURN study include finding ways to implement and disseminate findings to inform clinical practice and to communicate these findings to caregivers in the community.

Healing

NINR-supported researchers have made major discoveries in self-management science that are moving beyond education to teaching individuals and families to actively identify challenges and solve problems associated with their conditions. The science of self-management improves health outcomes by translating evidence-based therapies to community and home settings, using personalized interventions and advancing technologies.