Better Care for Huntington’s Disease Caregivers

by Bonnie Eissner

Most of us—at least those of us who lack scientific training—associate clinical research with the second definition of clinical: cool, analytical, dispassionate. Talk to Marie Cox, D.N.P., clinical assistant professor in the College of Nursing and Public Health, though, and it is apparent that her clinical research is anything but dispassionate.

Dr. Cox studies Huntington’s disease, but not from the point of view of its victims. Rather, she looks at the quality of life of their caregivers. She became interested in the field in the early 2000s when, as the research nurse coordinator in neuroscience at Northwell Health (formerly North Shore-LIJ Health System), she worked on research trials for patients with Parkinson’s disease and Huntington’s disease. She subsequently worked as a nurse practitioner treating patients with these conditions and similar ones.

Huntington’s disease has been called the disease of families. If one of your parents has Huntington’s, you have a 50 percent chance of inheriting the gene. There is no known cure, and the disease, which usually sets in during one’s 30s or 40s, is devastating. Nerve cells in the brain break down over a 10- to 20-year period, resulting in a gradual decline in the ability to reason, walk and speak.

Caring for the patient often falls to a family member and the burden can be enormous. The disease is relatively rare—there are about 30,000 cases in the United States—and the victims are often too young to go into traditional nursing homes. Add to that the pain of knowing that a victim’s offspring also have a high likelihood of carrying the gene.

As she began to work in the area, Dr. Cox noticed that “when someone is diagnosed with the disease, it was really the family member that needed a lot of attention—as much as the person diagnosed themselves.”

The observation led her to study the quality of life of Huntington’s disease caregivers. A 2009 survey she conducted among caregivers at four sites indicated a lack in social support services, both for Huntington’s victims and the people—usually family members—who care for them.

That conclusion led Dr. Cox and a colleague, Carol Moskowitz, a consultant at Terence Cardinal Cooke Health Care Center—a skilled nursing facility for Huntington’s disease care—to design their latest study: in-depth interviews with a smaller number of caregivers. “We’re going to ask them questions such as, ‘What works? What do you do to keep that person with Huntington’s disease at home?’” Dr. Cox said. Their ultimate goal is to share the results with families, nurses and other healthcare providers to help them care for persons with Huntington’s disease in the community. They also hope to find ways to reduce unnecessary healthcare expenses by keeping people well supported in the community.

Lowering healthcare costs ties in closely with New York State Governor Andrew Cuomo’s recently announced $45 million Vital Access/Safety Net Provider Program to improve community care for the most vulnerable members of the population.

“You never know what’s going to come out of” qualitative interviews, Dr. Cox said. She is excited by the endless possibilities and the promise of finding “some helpful information to share with the Huntington’s disease community to at least put some comfort into other people’s lives.”

This article was published in the 2016 issue of Erudition magazine. 

What if: TEDx Comes to Adelphi University

TED talks have become a staple of education and popular culture over the last few years. TED (Technology, Entertainment, & Design) is a nonprofit organization devoted to “Ideas worth Spreading,” usually through short presentations or talks. While viewers often associate these talks with celebrities, or famous researchers, what if the person sitting next to you in class made the video? On Tuesday, April 5, 2016, Adelphi University hosted the inaugural TEDxAdelphiUniversity event. Organized by the Adelphi University Center for Health Innovation (CHI), this independently organized event, licensed by TED, featured TED Talk videos as well as nine exceptional speakers under the theme of “What If…”

            After a brief introduction by Chairman of the Board of Trustees Robert B. Willumstad’05 (Hon.) and Elizabeth Gross Cohn, Ph.D., R.N., executive director of the CHI, the speakers came together to “collectively suggest ways we can improve ourselves, our communities, and our society,” according to Dr. Cohn. Each of the speakers presented to an audience of 100 in house guests and countless online viewers, to help present an exciting new perspective on our world.

Adelphi University President Christine M. Riordan  took the stage at the event. In her talk, “Dare to be Extraordinary, ” President Riordan discussed the difference between an ordinary person and an extraordinary one. “We think of ourselves as ordinary people leading ordinary lives, and yet, the reality is that we have the opportunity to all be extraordinary,” she said. She then went on to explain how her research has shown that all extraordinary people share three key characteristics: passion, courage, and resilience. They had passion to push themselves to change the world, courage to make the right and sometimes difficult decisions, and resilience to rise up in the face of adversity. President Riordan dared the audience members to be passionate, courageous, and resilient, and to push themselves out of their comfort zones in order to be exceptional extraordinary individuals.

            The event also featured eight other speakers including:

• Jennifer Krol ’17 is an undergraduate student at Adelphi, currently majoring in creative writing, in a 5 year master’s program for Childhood Education. Her talk, “The Culture Where No One is Culturally Competent: The Effects of Rape Culture on Children,” discusses how rape culture is instilled in girls from a young age, and how important it is to talk about these issues to empower girls to fight it.
• Rabbi Glenn Jacob D.D. is one of the interfaith chaplains and Hillel Director at Adelphi and the executive director of the New York chapter of Interfaith Power & Light. His talk, “God in the Public Square” discussed the difference between theist and non-theist god beliefs, and how non-theist god beliefs could change the way faith is discussed in public.
• Francine Conway, Ph.D.  is a professor and chair of psychology in the Derner Institute of Advanced Psychological Studies. Her talk, “Cultivating Compassion for the Attention Deficit Hyperactivity Disorder (ADHD) child—from Moral Indictment to Empathy,” discussed her experience having a child with ADHD, and how educators can develop compassion and empathy for these children, and how that empathy can be sued to more effectively treat ADHD.
•  Bernadine Y. Waller is an adjunct professor and doctoral candidate at Adelphi University School of Social Work. Her talk, “Hindered Help: How Societal Stereotypes Hinder African American Women Intimate Partner Violence Victims from Getting the Help They Need,” discussed how negative stereotypes are the reason why African American Women are less likely to get proper help when they are the victims of intimate partner violence, and how we as a society can attempt to look past those stereotypes to help them.
• Dr. Deborah Serani is an associate adjunct professor at Adelphi University. Her talk entitled “What if…You Knew Depression as a Doctor and as a Patient,” discussed her personal and professional experience as a psychologist living with depression, and pointed out important suggestions from both the prospective of a patient and a therapist.
• Anthony Zenkus is an adjunct faculty member in the School of Social Work. His talk, “Watch the Gap: How Capitalism Negatively Affects the Development of Children and How We Can Do Better”, discussed how income inequality and racism affect the development of children, and how a shift in wealth and power can give who are economically and socially oppressed a chance to reach their potential.
• Madeline Dressner ’13, M.A. ’14 is an elementary school teacher at E.M. Baker School in Great Neck, New York who graduated with her bachelor’s degree in psychology and master’s degree in childhood education from Adelphi University. Her talk, “Using Technology to Empower and Foster 21st Century Advocacy, Citizenship, and Empathy in Children,” discussed how technology in the elementary school classroom can be used to teach children advocacy, citizenship, and empathy. She also discussed her experience participating with her students in “Apps for a Cause,” where students came up with ideas for apps that can help better the world.
• Robert Goldfarb, Ph.D. is a professor of communication sciences and disorders. His talk, “An Aphasiologist Has a Stroke,” described his experience as a professor who teaches about the effects of a stroke on the mind, suffering a major stroke himself, and how he managed to maximize his recovery efforts.

The day also included networking and dialogue opportunities so attendees could reflect and discuss the serious issues brought up during the talks. Watch the talks online at http://bit.ly/TEDxAdelphi 

To learn more about this year’s event, follow @TEDxAdelphiU on twitter, like TEDxAdelphiU on Facebook or visit TEDxAdelphiUniversity.com

Richard Francoeur - CHI Summer Scholars

I am Richard Francoeur, Associate Professor of Social Work, at Adelphi University.  As a recipient of a CHI Summer Scholars Award to participate in a course last summer on SAS programming offered by the Epidemiology and Population Health Summer Institute at Columbia University, I was invited to submit this blog this month to share about how the course relates to my health scholarship and research endeavors.  The SAS programming course provides a basic overview about statistical syntax coding and analysis in a major software program.  I took this course to expand my knowledge of this software program, which I may use in future work.  The remainder of this posting will focus on my work in comorbidity, an area informed by statistical thinking.

I conduct research and scholarship to advance our knowledge of older, middle-aged, and underserved adults with chronic physical illness.  My publications, grants, presentations, and current investigations emphasize 1) Older and middle-aged adults coping with medical conditions or related physical symptoms who present with depression; and 2) Hidden or emerging clinical issues in older and underserved populations with chronic illness conditions, especially during palliative care. 

An earlier vein of my research produced a series of pioneering conceptual and empirical publications on age-related financial stress-strain relationships and underinsurance in outpatients receiving palliative radiation for recurrent cancer.  This research focused on patient age as a buffering or magnifying influence on the relationship between objective financial stress incurred by the patient and their family and the patient's subjective perceptions of various aspects of financial strain that they were experiencing.  Financial stress may have different impacts on health care access and health seeking behavior depending upon the level of financial strain experienced.  Thus, these factors constitute distinct comorbidity influences.

For the last several years, I have become interested in issues of comorbidity more generally. Generally speaking, co-occurring conditions, disease markers, pain and symptom clusters, economic contexts, and/or psychosocial factors may interact to magnify or buffer relationships to health or mental health outcomes. One type of focus in my work on comorbidity pertains to investigating pain and physical symptoms in cancer that occur in pairs or clusters and are related to depressive symptoms, which may consist of "sickness malaise" as well as mental health reactions to physical symptoms.  This area of research is important because detecting co-occurring physical symptoms and understanding their influence on sickness malaise and mental health can provide valuable clues for proactive assessment in subgroups of patients, as well as about interventions with "cross-over" effects (i.e., one intervention could relieve multiple symptoms).  It is practical to investigate the interactions among pain and physical symptoms as they predict mental health symptoms.  Since social workers and other mental health providers may be more aware of mental health symptoms, such as those of depression or anxiety, they may become more likely to screen for related physical symptoms as they become more aware of their synergistic influences, which may have deleterious effects on mental health. 

I also innovate statistical methods and models I use in my research to improve detection and interpretation of these synergistic influences.  In the first statistical innovation I published, I extended a non-graphical follow-up algorithm for interpreting two-way interactions into a more comprehensive procedure that can also interpret curvilinear interactions and three-way interactions in multiple regression.  Other investigators in discussion forums for leading statistical software (Stata, SPSS) have noted this innovation.  I consider a second statistical innovation I published as a kind of "breakthrough" because it overcomes low sensitivity in multiple regression to detect terms that involve interactions among predictor variables, a vexing challenge to researchers ever since computer software to conduct multiple regression became available in the 1960s.  I have advocated for the use of this statistical innovation in a few ResearchGate discussion forums in which investigators posed questions regarding how to deal with multicollinearity in interaction terms.  Incidentally, many of my publications can be downloaded from ResearchGate (https://www.researchgate.net/profile/Richard_Francoeur).  Currently, both statistical innovations are being developed into an app that will be hosted by Adelphi, and this app should be of interest beyond issues of comorbidity to research situations in many fields in which there is a need to detect and interpret interactions among variables.

A second type of focus in my work on comorbidity pertains to detecting psychometric profiles within subgroups.  I am currently working on publishing a new modeling specification strategy that links multiple regression fully and without bias to confirmatory factor analysis by making it possible to estimate all causal paths to a latent construct and its observed items.  I will discuss this new strategy in the context of articles I am developing that will report psychometric profiles of depression in subgroups characterized by progressive cerebrovascular disease (hypertension, silent cerebrovascular disease, stroke, post-stroke cognitive impairment, vascular cognitive impairment), and some of these cerebrovascular subgroups will be qualified further by co-occurring excess weight and diabetes.  As with the first type of focus in my work on comorbidity, for any of these subgroups, the psychometric profiles of depression items (the 20 items of the CES-D Depression Inventory) will also constitute a "symptom cluster," however it will differ in that the depression items are not tested to be mutually interactive or synergistic in their effects.  Rather, they constitute several psychometric items that constitute a psychometric profile for a particular subgroup of patients characterized by progressive cerebrovascular disease, and in some cases, by excess weight and diabetes as well.

My publications are influential, particularly in the multidisciplinary areas of cancer pain and symptom clusters, palliative care, and financial burden.  I am pleased to report that I was recognized this past year as a Fellow of the Social Research, Policy, and Practice section of The Gerontological Society of America.  Selection as a Fellow is an acknowledgment by professional colleagues of outstanding and continuing work in the field of gerontology and represents the highest class of membership in the Sociey.  My work has also attracted much interest in high-quality open-access journals as well as social networking sites, including ResearchGate.  Two of my open-access articles are highly accessed: 1) a recent report of my statistical innovation that improves detection of interaction effects in moderated regression; and 2) a commentary article on novel community programming strategies to ensure safe access to medication for palliative care while preventing prescription drug abuse.  I recently had the opportunity to share this commentary article, as well as my publications on pain and symptom clusters in palliative care, with the CEO of the Gerontological Society of America (GSA), James Appleby, who had solicited ideas, recent research, and resources regarding how to ensure people with pain receive the care they need while also countering abuse, misuse, and diversion of prescription medicine.  James Appleby seeks this information to help inform his advocacy and policy conversations with the Alliance for Balanced Pain Management (AfBPM), a group in which GSA has recently begun a partnership or collaboration. 

Adelphi’s Health Fair covered on MyLITV

During the week of April 4-10, 2016, Adelphi University celebrated National Public Heath week with a variety of exciting events.  On Wednesday April 6^th, The University held its fifth and largest AUHealth Fair to date, inviting more than 70 vendors to the Center for Recreation and Sports facility. At the fair, guests had access to several educational opportunities in addition to a market where they could purchase fresh fruits and vegetables. The event featured more than 15 student research poster presentations as well as giveaways and an opportunity to tour the Rollin Colon.


See the coverage from My Long Island TV which aired on FiOS1