UR Medicine Golisano Children's Hospital | Strong Kids 2020 Volume 1

UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS NEWS UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL

Music Therapy Program Connects with Patients

New Strategic Plan Emphasizes Community

2018 VOL. VOL. III 2020 I

Thunderbirds Dazzle Children Golisano Children’s Hospital

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For the past 20 months, the GCH community has worked tirelessly to shape our future direction and define success. Now, we are proud to reveal in this issue our 2020-2025 strategic plan. For this plan, we wanted to go beyond the typical approach and forge a new, innovative direction that deepens partnerships across the community to fulfill a simple vision: improving kids’ lives.

The landscape of children’s healthcare is changing, with increased use of technology, widening socio-economic disparities, and the rise of both chronic diseases and behavioral health disorders creating a need for a strategic plan that both elevates the academic and patient care excellence of the hospital and demands that our faculty, residents, and staff go beyond our walls to influence change. Partnerships with Rochester City Schools, as well as the outreach work conducted by the Hoekelman Center — both featured in this issue — illustrate the types of proactive, community-facing initiatives we will foster during the next five years to advance pediatric health.

In addition, it’s important we recognize the unsung heroes at GCH as we move forward.

Our Music Therapy program is a prime example of vital patient care work that may not be traditionally recognized, but is helping to improve lives. Our music therapists ease the anxiety and pain of our kids, provide an outlet for emotional expression during long stays at the hospital, and advance the burgeoning field of research exploring the relationship between music and health. We hope that the profile of the Music Therapy program and support from O.J. Sahler, M.D., illustrate the need to strengthen the essential work done by our therapists.

We hope that you will join us as we engage in new and innovative ways to help children thrive in our region and beyond.

Sincerely,

Patrick Brophy, MD, MHCDS Physician-in-Chief, Golisano Children’s Hospital William H. Eilinger Chair of Pediatrics

Golisano Children’s Hospital Board of Directors

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Mike Goonan, Chair* Mike Buckley Al Chesonis Jeffery Davis Roger Friedlander Jay W. Gelb John Halleran James E. Hammer Howard Jacobson Todd Levine Scott Marshall Gary Mauro Kim McCluski*

Kathy Parrinello, R.N., Ph.D. Brian Pasley Dante Pennacchia Ann Pettinella Jenni Ralph* Mark Siewert* Mike Smith* Steven Terrigino Donald Tomeny James G. Vazzana Alan Wood Bruce B. Zicari II

Faculty

Ex-Officio

Kate Ackerman, M.D. Susan Bezek, M.S., R.N., P.N.P. - B.C. Mitchell Chess, M.D. Richard E. Kreipe, M.D. Karen Powers, M.D.

Kellie Anderson* Patrick Brophy., Ph.D.* Steven I. Goldstein Jennifer Johnson Douglas W. Phillips R. Scott Rasmussen* Kelly McCormick-Sullivan Mark Taubman, M.D.

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Honorary Members Michael Amalfi Bradford C. Berk, M.D., Ph.D. Joseph L. Carbone, D.P.M David F. Christa Judy Columbus John L. DiMarco II Wanda B. Edgcomb Harvey B. Erdle Timothy D. Fournier Jack Goodrich Deborah Haen Nick Juskiw Elizabeth R. McAnarney, M.D.* Thomas McInerny, M.D. Gail Riggs, Ph.D. Nancy Robbins Jeffrey Rubenstein, M.D., M.P.H.

*Executive Committee

The Right Notes Music Therapy program eases pain, anxiety of patients

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rowing up, Olle Jane (O.J.) Sahler, M.D., played the piano. The New Haven, Connecticut native was proficient, having taken lessons at the Yale School of Music. While earning her undergraduate degree in Biochemical Sciences at Harvard, however, she stopped playing.

That was until she got her senior thesis back. After seeing the word “Summa” scrawled across the top of the title page, she sat down at the piano in the student lounge and played for three hours. “Chopin, Beethoven, Mozart. Lots of people stopped at the piano and said, ‘I didn’t know you could do that!’” she said.

That moment — for Sahler — was about the power of music to provide release from stress and anxiety. And now, 50 years later, music and its positive effects are still informing her clinical and research work as a Professor of Pediatrics, Psychiatry, Medical Humanities & Bioethics, and Oncology at the University of Rochester Medical Center (URMC). “I truly believe that 90 percent of pain can be addressed by reducing anxiety,” she said, “I’ve always been someone who tries not to prescribe lots of medication, and

O. J. Sahler, M.D.

music has become one of the therapies I urge people to turn to.”

For more than 20 years, she’s been a champion, and unofficial medical director, of the Music Therapy program at Golisano Children’s Hospital (GCH). For Sahler, music plays a critical role as both an antidote to stress and a means of helping patients develop positive coping skills, improve selfexpression, and experience a better quality of life.

Sahler’s interest in Music Therapy started in 1997, when she met Bryan Hunter, Ph.D., L.C.A.T., M.T.-B.C., Professor of Music Therapy at Nazareth College. Dr. Hunter was on sabbatical with the goal of expanding music therapy services into general medical settings. A graduate of Maryville College.

Hunter participated in a pilot music therapy program with Forbes Health System in Pittsburgh in 1976. While pioneering services in this innovative program, Hunter worked with a variety of patients — and found a couple of breakthrough moments, including comforting a six-year-old boy who had been hit by a care and was in traction.

“When it came time for his mom to leave, it was rough…he was in tears.

I remember getting my guitar out and singing for him and in a few minutes he was asleep,” said Hunter.

This encounter — and others — gave Hunter an early glimpse of the potential of music therapy in the medical setting.

“Hospitals generally aren’t the places you want to be. Music has an incredible role to play in humanizing the experience and providing support,” he said.

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Rosemary Obi leads a group music session for children aged 0-6.

PROGRAM LAUNCH – AND SUSTAINED SUCCESS In 1998, Sahler and Hunter piloted music therapy sessions with pediatric oncology patients in the outpatient clinic at GCH. During these sessions, the parents of one study participant requested that the music therapy support continue after the child was admitted to the bone marrow transplant unit (BMTU). The unit staff at the BMTU saw how music enhanced this child’s coping and asked if adults could receive music therapy as well.

Thanks to a 2001 grant from the National Center for Complementary and Integrative Health (NCCIH), Sahler and Hunter were able to expand this service to adults in the BMTU. This grant also allowed the team to hire Rosemary Oliva Obi, M.S., L.C.A.T., M.T.-B.C., a graduate of the University of Dayton’s Music Therapy program.

As awareness of music therapy spread, Obi collaborated with the Child Life program at GCH to establish weekly music group programming for both oncology and other pediatric patients. While the NCCIH grant expired in 2004, funding for the program continued through the Department of Pediatrics, in addition to gifts from individuals and community agencies such as the annual Battle of the Beaks fundraiser at Nazareth College. “We’ve been very grateful that the Department of Pediatrics has been able to support the program after all these years,” said Sahler.

Obi remains as internship director and full-time music therapist. Over the years, the program has trained more than 70 practicum students and interns from Nazareth College, and in 2015, Elaine Kong, M.M., M.T.-B.C., joined part-time to expand the program to the pediatric general and cardiac intensive care units. In July 2017, Kong began piloting music therapy services

in the Neonatal Intensive Care Unit (NICU).

The daily life of a music therapist is a whirlwind. At any moment, a therapist could be seeing an individual patient at bedside, leading a group session in a playroom, reviewing medical charts to assess patient needs, learning patientpreferred songs, creating individualized playlists, attending interdisciplinary rounds, supervising students, serving on committees, or documenting session results.

In the midst of clinical duties, the therapists also meet with interested visitors and seek partnerships within the community.

Both Obi and Kong are proficient on multiple instruments as well as voice so they can meet the needs of patients of different ages and developmental abilities.

In some cases, the intervention can be as simple as playing a soothing song to keep a patient calm before a procedure. “The first 10 minutes are about getting to know each child and establishing a rapport,” said Obi, Golisano Children’s Hospital

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“our job then is reading the situation and picking the right moment to connect with them.”

For teenagers, Obi might help them write a song of their own, or discuss the lyrics of favorite songs to tap into emotions and ease anxiety. For example, Obi once worked with a 14-year-old struggling with an eating disorder who tended to bottle up negative emotions and anger. She helped the girl identify a song that communicated how she felt. The patient grabbed Obi’s drum and began playing it furiously. “The song gave her permission to let the anger out,” said Obi. For Kong, working with infants offers an opportunity to help parents bond with their baby. “In the NICU, mothers may not know what to do. They aren’t allowed to feed or change diapers, but they want to be there with their child. Music helps connect them.”

Music also has the added benefit of acclimating infants to their surroundings.

“If we present stimulation strategically, we increase their tolerance and show parents how their baby reacts to stimuli,” Kong said.

“Sessions also help show parents how to interact with their child in the hospital and, eventually, at home.”

Both Obi and Kong use their musical skills to mask environmental sounds within the patient’s room. Live music is adaptable, and can be matched to the tempo of a ventilator or played in the key of medical equipment sounds. “We listen to the environment and use music to make the environment more healing,” said Obi. “I recently matched my music to the pitch of an oscillator while playing for a patient who was intubated. My goals were to promote relaxation and prevent over-stimulation. The patient’s heart rate went down by 20 beats per minute by the end of the session.”

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SUSTAINING THE FUTURE— RESEARCH AND FUNDING For Sahler, it was no surprise that Obi and Kong have been so successful connecting with their patients to ease distress and anxiety through the language of music. Since music therapy is not a traditional form of treatment, however, the team often has to explain the value of the program. “Inevitably, we hear ‘show me the data,’ in response to advocating for music therapy,” said Sahler, “actually, there are many studies showing the calming benefit of musical interventions. This evidence should influence how we approach pain medicine: while we treat a patient’s ‘hurt’, we should also treat their fear.”

From the beginning, Sahler and Hunter have been committed to evidence-based practice and conducting clinical outcomes research for music therapy. They have published a number of studies in peerreviewed journals. Their data strongly support the use of music therapy in symptom management.

Despite two decades of implementation, however, sustaining music therapy services remains a challenge, in part because it is currently not a billable service.

Consequently, the program relies on donations.

To ensure the stability of Music Therapy at GCH, Sahler and her husband, Carl Sahler, M.D., are creating a $2 million endowment for its continuation. This gift renames the Music Therapy program to the Sahler Family Music Therapy Program, and also serves as a companion to the Eastman Performing Arts Medicine Program (EPAM), a new URMC initiative to bring the collaborative potential of the performing arts and medicine into the health care environment, including increased access to music therapy for all patients.

In addition to the Sahlers’ support, longtime GCH supporters Jim, Cindy and Kera Panzetta established the Panzetta Music Therapy Endowed Fund in 2018 to help the program. “A friend of the family was here not too long ago, and music really helped to calm her son,” said Jim Panzetta.

“I’ve spoken with doctors and psychiatrists around me as well, who really embrace music with their own families. I started to realize how excited they were about how it can help children.”

Ultimately, Sahler hopes that support from people like her and her husband and the Panzetta family will help attract continued support for music therapy and EPAM. These endowments secure the future of the program; however, the need for growth now is critical. Current funding for the program is guaranteed only through June 2020. Many patients that would benefit from multiple sessions each week are seen only once; and some children are never seen because of limited staffing. “We are a community for which music is known to be a vital part,” said Sahler, “I’m hoping that we can develop and enhance the concept that music, music therapy, and medicine are integral partners in providing health care for the whole person.”

THE SAHLER AND PANZETTA FAMILY ENDOWMENTS WILL HELP THE MUSIC THERAPY PROGRAM IN THE FUTURE. ADDITIONAL GIFTS COULD MAKE IT SUSTAINABLE IN THE PRESENT. To support the Music Therapy program, please go to: givetokids.urmc.edu/ musictherapy. Thank you!

Elaine Kong plays for an infant in the Pediatric Intensive Care Unit.

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Partnerships, Community Outreach Drive Strategic Plan

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hen Pediatric chair Patrick Brophy, M.D., began the strategic planning process for Golisano Children’s Hospital (GCH) in May of 2018, he had one primary goal in mind: don’t follow the herd.

“I didn’t want this to be the typical strategic plan that gets drafted, reviewed, and then put it in the drawer for five years,” he said, “I wanted to focus on actionable things: initiatives that were proven to make a difference in the community, and I wanted us to elevate them.”

This goal drove the process — completed in the fall of 2019 — to gather GCH and community leadership to craft a strategic plan that is both ambitious and achievable.

Doing everything in our power to help every child reach their fullest potential

The GCH strategic plan mission – doing everything in our power to help every child reach their fullest potential – is organized into the following seven categories with their own separate goals: • Education • Patient

Care

• Research • Community • Population

Health Health • Culture • Digital

None of these categories, however, are intended to exist in a vacuum. “All of these areas work together,” said Brophy, “for example, digital health — including technologies like telemedicine— allow us to form partnerships with the community and serve more patients where they live, reducing barriers to care and improving the overall health of the population.”

One initiative — the Preventive Care Program for Urban Children with Asthma — is an example of how multiple strategic plan ideas work together to improve the lives of children. Through this initiative, research investigators, program coordinators, project nurses, graduate and undergraduate students, and volunteers from the Division of General Pediatrics have partnered with the Rochester City School District and primary care practices to improve care for urban children who suffer from asthma. This initiative, which also utilizes telemedicine, has helped to cut asthma-related emergency department visits in half, and the model is now being used to form new programs addressing other diseases, such as hypertension (read more about the program on page 16).

These programs — ones that are research-based, proven to be sustainable, and address a major community need — form the backbone of a proactive effort from the GCH community to address the social determinants of health that adversely affect kids across the region, whether it’s geographical isolation in rural areas or logistical/resource barriers in the city.

To achieve these goals, more community partnerships will be critical, according to Jeff Kaczorowski, M.D. professor of Pediatrics and leader of the strategic plan’s community initiatives.

“Kids don’t live in their pediatricians’ offices — they live in homes with their parents and family members; they spend time in schools and on the playground; they are in the community with their peer groups,” said Kaczorowski.

To effectively engage kids and parents where they are, two-way communication is necessary, according to Shaun Nelms, Ed.D, associate professor and superintendent of East High School.

“The first time we met with Pediatrics at East High School, they helped us understand the concept of social determinants of health, how that affects the health care profession, and how we can use that knowledge to support our families,” said Nelms, “they also listened to us and made very strategic and thoughtful recommendations.”

Thanks to this collaboration, East High School has utilized everything from integrated dental care to trauma counseling to improve the academic and social outcomes of its students.

Successful community engagement also requires a strong educational foundation, and the Pediatric Residency Program has a history of fostering effective outreach in the

region. The Hoekelman Center, a program that connects residents with area nonprofits that benefit kids and adults, is an essential part of this plan.

“The Hoekelman Center is one of the first programs in the country to train residents on conducting communitylevel advocacy,” says Caren Gellin, M.D., associate professor and the residency program director, “it’s the model for helping people to go beyond our hospital walls.”

The Hoekelman Center’s signature program, the Long-Acting Reversible Contraception Initiative (LARC), has helped significantly reduce the teen pregnancy rate in Rochester. The initiative — which is featured on page 14 — is being expanded under the strategic plan to educate more community organizations and providers about the benefits of this form of contraception, thanks to the efforts of Accountable Health Partners (AHP).

“There’s a lot of energy in the community when we land on a population health initiative that has a significant impact. Expanded access to LARC is one of them,” says Meagan Fournier-Boome, project manager at AHP. LARC is a piece of one important part of the GCH community plan — the 1,000 days initiative — that emphasizes the importance of the 1,000 days between a women’s pregnancy and her child’s second birthday. “How children grow and develop is determined by many factors during this period. Prenatal health, poverty, inadequate nutrition, an unsafe and violent community environment can have negative effects on a child during crucial developmental years, and for the rest of their lives,” says Kaczorowski.

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In response, GCH will look to scale-up everything from family planning (LARC), post-natal home visits, and increased pointof-care screenings for hazards like lead and hemoglobin. This comprehensive effort is centered on goals that cover the spectrum of early childhood outcomes, from reducing the number of low-birthweight child deliveries in the region to increasing the number of students entering Rochester schools that are academically and emotionally ready.

While early interventions are critical, GCH’s plan also includes a comprehensive approach to expand and develop innovative

behavioral health interventions for children of all ages. One such initiative is increasing behavioral health screenings at primary care practices to implement uniform standardized approach across our region. This effort, like many others in the strategic plan, will require collaboration, but the commitment is there, according to Michael Scharf, M.D., associate professor of psychiatry.

“This is an exciting time. I am proud of the progress our community has already made, and the potential to make an even greater impact on the lives of children and families is now right in front of us.”

Strategic Priorities: pre-pregnancy through early childhood

PRE-PREGNANCY

Reproductive health and young adult behavioral health support

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PRENATAL

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0-3 YEARS

Targeted home visitation, parental education, and lead screening

3-5 YEARS

Behavioral health screening, pre-K/UPK

Strategic Plan At-A-Glance

Description

Patient Care Develop high-value clinical

programs that position GCH

as leaders nationally and

Leadership Susan K. Bezek, R.N., M.S., PPCNP-BC Clinton Morrison, M.D. Timothy Stevens, M.D., M.P.H.

internationally, and prepare GCH for population health care models.

Education Patricia Chess, M.D. Develop health care providers

Caren Gellin, M.D. with the skills and mindset to

Anne Swantz, N.P. guide academic health care into the future Research Kate Ackerman, M.D. Break new ground in child

Tom Mariani, Ph.D. health research with novel cures

Amy Vierhile, N.P. and treatments and models of care.

Community & Advocacy Dirk Hightower, Ph.D. Focus on families and the first

Jeffrey Kaczorowski, M.D. 1,000 days of a child’s life to

Shaun Nelms, Ed.D. increase the next generation’s quality of life.

Population Health Collaborate with our community & Partnership of scientists, educators, pro-

Laura Jean “LJ” Shipley, M.D. Mike Scharf, M.D.

Daryl Sharp, Ph.D. viders, and payers to develop

population health approaches to improving children’s health in our region and beyond.

Analytics & Digital Health Lauren Bruckner, M.D., Ph.D. Drive efficiency and innovation

Craig A. Mullen, M.D., Ph.D. in technology to improve outcomes for patient and families.

Culture & Opportunity Build a healthy, inclusive envi-

Jamilyn Bradley

Kate Greenberg, M.D. ronment to attract and retain

Laurie Steiner, M.D. the best and brightest talent for

Golisano Children’s Hospital.

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Birth Control Initiative Reduces Teen Pregnancies in Rochester Adoption of Long-Acting Reversible Contraception (LARC) Far Exceeds the Rest of the Nation

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ix years ago, the Hoekelman Center — a program that connects doctors from the department of Pediatrics with non-profits to benefit kids and adults by making our communities healthier places to live — launched a new program in Rochester: the Long-Acting Reversible Contraception Initiative. Referred to as LARC, the initiative was designed to increase access to highly effective methods of birth control — including intrauterine devices and contraceptive implants — for adolescents in Rochester.

Thanks in part to the LARC initiative, the rate of teen pregnancy in Rochester has declined 52 percent during the past decade, a more significant improvement than New York State as a whole, according to the New York State Department of Health. In addition, usage of LARC among sexually active high school females in Rochester increased from 4 to 24 percent from 20132017, compared to an increase from 2 to 5 percent nationally. Due to these results, the initiative has become a model for community partners collaborating to spread innovation in healthcare. It also directly aligns with the strategic plan’s 1,000 days initiative underway at Golisano Children’s Hospital.

“The 1,000 days initiative is about improving the health and well-being of children from ages zero to three. But, part of what determines a baby’s health is what happens before birth. This is why we, along with community partners such as Healthy Baby Network and the March of Dimes, care about healthy babies and access to effective birth control,” said Andrew Aligne, M.D., M.P.H., director of the Hoekelman Center.

Studies have shown that unintended

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teen pregnancy can lead to a number of critical health and social problems for young parents and their children: low birth weight, unemployment, school failure, among many other serious issues. Because of these risks, the Centers for Disease Control and Prevention (CDC) has declared teen pregnancy a national public health priority and the CDC, along with the American Academy of Pediatricians and the American College of Obstetricians and Gynecologists, recommends LARC as a safe and highly effective method of pregnancy prevention for adolescents seeking contraception.

Aligne and his team have led the community effort to promote LARC by conducting outreach to local organizations that work with youth. They employ a simple, lunch-and-learn approach that forms the backbone of the Hoekelman Center’s advocacy work.

“An interesting aspect of the LARC project is that we talk to adults, not to teens. We work with our community partners to teach adults about birth control.

This way, they can help teens to make well-informed choices about preventing unintended pregnancy,” says Jessica Van Scott, M.P.H., the LARC Initiative’s health project coordinator, who runs all logistical aspects of the initiative.

Through their research with area teens, the LARC team found that many were interested in learning about birth control, and that they often asked their most trusted peers and adults for advice.

“If teens are learning outside the medical setting from trusted youths and adults, then how do we increase the likelihood that anyone they talk to will share accurate information? We thought it could help if we gave resources with useful information to adults who work with teens

in the community,” said Aligne.

So far, they have presented to more than 2,700 adults in health care settings, as well as those in community settings, such as staff of after-school programs. The talks provide information about the safety, efficacy, and availability of LARC, with the goal of improving knowledge and access at the community level.

“LARCs are more effective than pills, patches, and other contraceptives because they remain in place all the time,” said Katherine Greenberg, M.D., an adolescent medicine specialist at Golisano Children’s Hospital. “Today’s LARCs are safe, effective, invisible, and can be easily removed with no lingering effects when you decide to become pregnant.” LARC methods protect against pregnancy for up to three to 12 years, can be removed at any time, and are 40 times more effective for teens than the traditional birth control pill.

The Hoekelman Center’s efforts are bolstered by an extensive network of local agencies, including the initiative’s core partners: the Metro Council for Teen Potential, Highland Family Planning, Planned Parenthood of Central and Western New York, and the Greater Rochester Health Foundation, which is the primary funder of the program.

“We have been nothing but impressed with the project,” said Matthew Kuhlenbeck, president and CEO of the Greater Rochester Health Foundation.

Thanks to new support from Accountable Health Partners, the Initiative will expand and provide more educational sessions to regional providers in 2020.

To learn more about the LARC Initiative, visit www. hoekelmancenter.org.

LARC team members regularly present to community organizations to spread awareness.

LARC team members Rosa M. Lloyd, M.B.A., Kelly McDermott, M.A., Jessica Van Scott, M.P.H., Katherine Greenberg, M.D., and Andrew Aligne, M.D., M.P.H.

The Hoekelman Center spreads awareness through their deep network of partnerships in the Rochester region.

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A Model for Rochester and the Nation

School-Based Asthma Program Sets the Standard for Community Engagement

As a school nurse in the Rochester City School District, Ann Marie Perrello has sent children in the throes of an asthma attack to the hospital in an ambulance. She’s held a child’s hand as she administered emergency medication to help them breathe. And she remembers the loss of a child two years ago who passed away following an asthma attack that occurred during winter break.

“One loss is one too many,” said Perrello.

“Kids here were suffering, and they didn’t need to be.”

More than 10 percent of children in the district suffer from asthma, and in Monroe County, hospitalization rates for asthma are five times higher in the city than in suburban areas. Because of barriers to care that they may face, children living in the district often 14

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don’t receive the daily preventive asthma medication that they need. As a result, children’s symptoms worsen. They miss school, so their parents have to miss work.

Some children end up in the emergency department or in extended hospital stays.

“After the crisis passes, many of these kids don’t receive follow-up care,” said Christy Lamberton, a nurse at School No. 45. “So they never get on the right treatment plan, and their symptoms never improve.”

REACHING KIDS WHERE THEY ARE Jill Halterman, M.D., M.P.H., is a general pediatrician, not an asthma specialist. But, when she realized from her work in primary

care how asthma disproportionately affected low-income, inner-city children, she saw an opportunity to help.

“My goal was to improve the delivery of care to underserved children who are suffering the greatest burden from asthma,” said Halterman, executive vice chair and associate professor of Pediatrics.

To address the challenges many families face and ensure that children get the treatment that they need, Halterman developed the School-Based Asthma Therapy (SBAT) program in partnership with the Rochester City School District. As part of the initiative, children receive their preventive asthma medication each day under the guidance of a school nurse or health aide. The model improved children’s

symptoms, reduced absenteeism, and allowed children to be more active.

“We have seen that when kids consistently get their maintenance medication at school, they notice after a time, they feel better and are able to participate more,” said Lamberton.

Now, the program also has a telemedicine component, which connects children in schools to primary care providers in the office. These providers help to determine the best form of therapy and then stay readily available in a child’s care — all via telemedicine. Halterman’s study of the program found that children who receive both telemedicine support and therapy at school are almost half as likely to need an emergency room or hospital visit for asthma.

who have barriers to receiving quality asthma care, you need to give added assistance to ensure children have the right medications — and that they receive those medications on a regular basis.”

Locally, Halterman and her team plan to take the work further and are now studying whether additional components of the program could be successful. Here’s a look at three ongoing initiatives, each funded by separate $3.5 million grants from the National Institutes of Health:

WIDE-REACHING IMPACT Nationally, other organizations are looking to Rochester and adopting Halterman’s program. Nine other sites, including school districts in New York City, Philadelphia, and Columbus, OH, have consulted with Halterman’s team and implemented a similar initiative. In Columbus, Elizabeth Allen, M.D., a pediatric pulmonologist and the medical director for quality, came across the program after she and her team identified asthma improvement as one of their top priorities.

“We started looking into Dr. Halterman’s program and it stood out as effective and well-vetted to work,” said Allen. “It’s effective, because for families

Helping children with moderate to severe asthma: Using telemedicine, this project links students who have more asthma to providers who specialize in asthma care. Doctors are then able to prescribe optimal treatments, address related conditions, and make adjustments as needed.

• Providing telemedicine support following an ED visit: As part of this initiative, children who visit the emergency •

department for asthma are set up with follow-up appointments with a provider.

The visits are conducted in the school health office, childcare site, or children’s homes using telemedicine and are designed to ensure that children receive treatment, and hopefully avoid the need for additional emergency visits.

• Targeting teens: This project provides preventive medications to teens while they are at school, along with motivational counseling sessions to help them adhere to their treatment. Combined, the components are designed to enhance preventative asthma care and promote developmentally appropriate selfmanagement for inner city teenagers.

There’s no doubt that this program has helped children better manage their asthma symptoms and improved their health. But Andrew MacGowan, project administrator in the district, also noted the many other positive effects of Halterman’s work, which extend beyond the walls of the schools in the district.

“This program has created a model for how other organizations can best work with the school district — something that’s not always easy to do — and how to best engage our parents,” he said. “Because of these initiatives, we’ve been able to forge new connections with parents so that we can work together for the good of our kids.”

In addition to being adopted by other city school districts, Halterman’s model is being expanded for other programs at URMC as well. Through funding from the Department of Pediatrics, the Nephrology division will pilot an initiative with the Rochester City School District to provide telemedicine treatment for children with hypertension. “We’re using the infrastructure of the asthma program, which has had real success preventing barriers to care, to achieve similar results,” said Marc Lande, M.D., Ph.D., chief of Pediatric Nephrology.

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Thunderbirds Touch Ground at GCH GCH children received a special visit from the Air Force Thunderbirds on August 23 during the Rochester International Airshow weekend. The crew—which included several pilots—chatted with families and pinned wings to patients before leaving for the Rochester International Airport to put on a show right outside the children’s windows!

Photos: USAF Senior Airman Andrew Sarver

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Tha n k y o u!

We ar e extre m e ly grate ful to o ur co m mu n ity fu ndra is ers.

Amber's Cookbook Fundraiser Anthony's Lemonade Stand Community Wellness & Guide Magazine Courtney Jadus and Sierra George Cruisin for Carter Dudley Fall Crawl Exceptional Senior Soccer Game Ferro Wedding Finger Lakes Wood Turners Genesee Valley Hunt Races Great Lakes Classic Cars Greece Athena "Cinderella" Cast and Crew Kyle Wilson Mackenzie Burke Midlakes Middle School Mila's Wings Golf Tournament Monroe Class of 1953 Mullen Family Ice Cream Fundraiser Music for Mom Nazareth College Charlie Brown Christmas North Atlantic States Regional Council of Carpenters The Rainbow Classic Ugly Disco Verhulst Haunted Hayride Victor Soccer Boosters Wallyhoo Wingfest Zoey's Tree Farm

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NEW REGIONAL CARDIOLOGY PROGRAM FOSTERS COLLABORATION ACROSS WESTERN AND CENTRAL NEW YORK A new Regional Pediatric Cardiology Program, formed between the Golisano Children’s Hospital (GCH) in Rochester, Upstate Golisano Children’s Hospital in Syracuse, and the Oishei Children’s Hospital in Buffalo will allow the three institutions to collaborate, share resources, and attract top talent to the Western and Central New York Region.

Established as a critical part of GCH’s strategic plan for patient care, the program will enable children and adults with congenital heart disease to receive state of the art cardiac and surgical care without having to leave their communities, according to new program director Nader H. Atallah, M.D. “This collaboration will allow us to pool our resources together in order to deliver consistent and effective care to children and adults with congenital heart disease across Upstate and Western New York. We will be able to recruit staff, cardiologists and surgeons, and we will also be able to develop new programs that would elevate our pediatric cardiac services to the level provided at larger, nationally recognized programs,” he said.

Atallah’s experience working at GCH and in Syracuse makes him well-suited for the position, according to Patrick Brophy, M.D., chair of the Department of Pediatrics. “He brings an enormous skill-set to a highly demanding surgical program,” says Brophy, “and his expertise in working with the surgical director of the regional cardiac program will be invaluable in providing timely, value-based clinical care for patients and families in our region and beyond.”

Congenital heart defects affect nearly one percent of newborns, and Atallah wants people to know that the regional program is well equipped to take care of all types of congenital heart defects.

For non-emergency cases, such as murmurs and arrhythmia, caregivers at Buffalo and Syracuse will now be able to treat patients effectively without referring them to GCH. This will open more capacity for GCH caregivers to treat more complex cases. Atallah credits the success of this new program to the “talented support staff, clinical technicians, nurses, advance practice providers, sonographers, perfusionists, operating room staff, cardiac intensive care staff, managers, information technology specialists and administrators who are dedicated to the care of our patients.”

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Tooth decay is the most common chronic disease among children in the United States. Rochester’s Eastman Institute for Oral Health is trying to change that with the nation’s first dental clinic for pregnant women and their babies. Here, education and compassionate care are given freely so that tooth decay is one less thing to worry about.

Because healthy teeth make for brighter smiles all around.

The Rochester Effect. For smiles ever better.

EverBetter.Rochester.edu

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COMPASSION FOR PARENTS BRINGS POPULAR ANCHOR TO GCH Jennifer Johnson looks to draw from personal experience as director of family and community outreach Just days into her new role as Director of Family and Community Outreach, Jennifer Johnson was already bouncing off a long list of ideas to her colleagues at Golisano Children’s Hospital and the Department of Pediatrics. But many of her ideas began to form long before she joined URMC in an official capacity on October 7, 2019.

“I enjoyed my job at 13WHAM News tremendously and am so grateful for the platform it allowed me to tell patient stories, spotlight research, and help with hospital fundraisers such as Grace’s Garden,” said Johnson.

“However, I was finding that I was spending more and more of my free time on hospital-related issues. A year ago, I wrote down all my ideas and goals and asked if it made more sense to work on these issues from a role within the hospital.”

Johnson’s career change comes from a very personal and painful experience. As an anchor on WHAM-TV, she had revealed in 2011 — on-air — that her daughter Grace was born with a birth defect called a Congenital Diaphragmatic Hernia (CDH) and was being treated at GCH. When Johnson and her husband Vinnie Esposito lost Grace in 2013, viewers — and the community — mourned with the family.

“I think you learn so much by going through the process of having a sick child, and many of the people who have gone through it are busy taking care of kids with medical needs and might not have time to advocate for changes that might make the process easier,” says Johnson. “That is what I hope to do in this role: be an advocate for patients and their families. That includes both while in the hospital and once they are home.”

Bringing Johnson on board as the director of family and community outreach is a unique opportunity for both GCH and

the mother of three. Johnson will use her personal and professional experiences to develop community initiatives, host and facilitate outreach events, and build networks of parents and family members to support the hospital’s mission.

“This newly created position will help us extend our ability to form region-wide alliances with parents, community agencies, and schools that share our mission to promote children’s health,” said Patrick Brophy, M.D., Physician-in-Chief of GCH and chair of the Department of Pediatrics.

While Johnson remains in awe of the care that Grace received at GCH, she also acknowledges opportunities to provide more support and resources for families.

“We were so thrilled when Grace came home from the hospital, but it was a very stressful time. Not only were we as a family learning and managing her very delicate around-the-clock care, but we were also having to find and manage a team of roughly 30 of her caregivers. It was like running a small company comprised of doctors, home nurses, therapists, medical suppliers, etc. Not to mention the mountains of paperwork that came with it.”

Johnson continues, “All of these entities impacted one another, but they weren’t set up to communicate with each other. This was my family’s experience and I have heard similar stories from others.”

Viewers often feel as if they know the TV personality on the other side of the screen. Now, they and the community will get to know Johnson – and perhaps even work with her – as she embarks on this new role in honor of her daughter Grace.

Johnson with husband Vinnie Espisito and daughter Grace at GCH groundbreaking ceremony

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BANK OF AMERICA ANNOUNCES $250,000 INVESTMENT IN GCH PEDIATRIC BEHAVIORAL HEALTH AND WELLNESS BUILDING Grant will support construction of 36,000 square foot facility that will double the available space for outpatient and partial hospitalization services to treat behavioral and emotional conditions Bank of America announced In November that it is awarding a $250,000 grant to University of Rochester Medicine’s Golisano Children’s Hospital (GCH) to support the construction of a new Golisano Pediatric Behavioral Health and Wellness Building in Rochester.

This two-story, 36,000 square foot facility will immediately double the available space for outpatient and partial hospitalization services for the GCH Pediatric Behavioral Health and Wellness Program, and will help GCH meet the increasing demand for child behavioral health services in the Finger Lakes region.

The new center, which broke ground in spring of 2019 and will be completed in 2020, will help patients with depression, anxiety, psychosis, substance abuse,

post-traumatic stress disorder, and other behavioral and emotional conditions.

The Golisano Behavioral Health and Wellness building will bring outpatient and partial hospitalization services under one roof, and is constructed to add more intensive outpatient services that will allow children to receive a higher level of care than traditional services, while still attending regular school and living at home.

The facility will also include the only partial hospitalization program of its kind in the state west of the Hudson River.

Most importantly, the facility will also serve a vital need: the current partial hospitalization waiting list for the Finger Lakes region is up to 90 youth during the school year.

“We applaud GCH for their proactive strategy and efforts to deliver child behavioral health services, which is a critical need in treating young patients with emotional and behavior issues,” said Colleen Matteson, Bank of America Rochester market president. “Bank of America is proud to be part of this project that will ultimately

enhance the level of medical treatment available in the Rochester community.”

In addition to increasing capacity, the new facility is constructed to provide a comfortable, caring environment for kids.

A library, as well as art and music therapy programs, will allow patients to relax and unwind. In addition, a multidisciplinary team of psychologists, nurses, child psychiatrist, social workers, and mental health counselors will be on-site to serve the individual needs of each child.

“Bank of America’s partnership will help us implement a comprehensive strategy that focuses on early recognition and treatment, as well as community partnerships, to help reduce the number of children at risk, and give families new reason to hope,” says Michael Scharf, M.D., associate professor in the Department of Psychiatry.

The Golisano Behavioral Health and Wellness Building will be completed this year.

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RE/MAX Our local RE/MAX offices go above and beyond for Golisano Children’s Hospital (GCH) through their Children’s Miracle Network Hospitals Miracle Home Program. The program allows RE/MAX agents to give back to the hospital and support the community they do business in by making a donation for every transaction completed.

Through this effort, our local RE/MAX Plus office contributed more than $19,000 to the children’s hospital. The office doesn’t stop there — they also organize a very successful golf tournament every year. This past August, they hosted their 8th tournament and raised more than $14,000. The funds from this year’s tournament will benefit the Golisano Pediatric Behavioral Health and Wellness Building, currently under construction.

Our great friends at The RE/MAX Realty Group also participate in the Miracle Home Program. Their incredible generosity amounted to more than $19,000 through their involvement as a Children’s Miracle Network Hospitals Sponsor.

Our sincere thanks to both of these incredible offices for their continued support over the years!

Dairy Queen Our local Dairy Queen restaurants not only served up some delicious blizzards on Miracle Treat Day this past year, but they also delivered some incredible contributions to the Children’s Hospital. For every blizzard sold on July 25, $1 was donated to the children’s hospital, and in total, more than $25,000 was raised this year by the three locations — that’s a lot of blizzards! This year’s funds will support the new Golisano Pediatric Behavioral Health and Wellness Building. What a great contribution to help an incredibly important cause. Thank you to all of the employees of Dairy Queen for their enthusiastic support.

Costco While we only have one Costco location in our area, that doesn’t stop them from being one of the top fundraising partners. During the four-week fundraising campaign that ran this past May, every employee helped to raise an incredible $48,680!

Since they opened in 2017, our local Costco has raised more than $168,000 for the children’s hospital! What an amazing accomplishment for one location!

Aflac Our local representatives from Aflac are a fairly new partner with GCH, and they wanted to do something special to support kids with cancer. So Shane Stickle organized the first annual Aflac golf tournament, which was held in September. With more than 100 participants, they raised $4,200 — enough to purchase a brand new infusion chair for our Pediatric Treatment Center. The tournament was a great kick-off to Aflac’s involvement. Their members are excited to partner with the children’s hospital, and we look forward to continuing this amazing partnership with this very enthusiastic and supportive group.

Walmart Our local Walmart Stores go above and beyond throughout the year for GCH. For more than 3 decades, Walmart has been a part of the Children’s Miracle Network Hospitals. Locally, the Walmart stores have raised more than $4.2 million during their 28 years of fundraising. This past year, they raised close to $150,000 through their five-week campaign and various other fundraising efforts throughout the year. Some of the funds raised this past year will benefit the Injury Free Coalition for Kids of Rochester.

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Upcoming Community Events

Golisano Children’s Hospital Advancement Office

585.273.5948 | www.givetokids.urmc.edu

Cares for Kids Radiothon February 13 and 14 Strong Memorial Hospital lobby

(585) 241-kids (5431)

Tune in to Mix 100.5 and WHAM 1180 from 5 a.m. - 6 p.m. on both days of the Radiothon to hear inspiring stories from the children’s hospital. The Radiothon will air live from the lobby of Strong Memorial Hospital and you’ll be able to call in your pledge to support the work our team does.

Roberts Wesleyan Men’s and Women’s Basketball Game February 23 Voller Athletic Center at Roberts Wesleyan College Basketball fans will gather in the Voller Athletic Center at Roberts Wesleyan College. Proceeds from the game will be given to the Onnie Wells Child Life Fund in support of the Onnie Wells Child Life Activity Room located in the Pediatric Intensive Care Unit at Golisano Children’s Hospital.

Ugly Disco March 28 Rochester Riverside Convention Center Come get your groove on from 8 p.m. – 1 a.m. at this ‘70s celebration. The Ugly Disco is a night of fun that features live music, Twister, and more. For more information, visit www.uglydisco.com.

Scott Rasmussen Sr. Assistant Vice President for Advancement Betsy Findlay Sr. Director of Advancement, Special Events and Children’s Miracle Network John Belt Advancement Assistant Meghan Barnhardt Associate Director, Community Affairs Adam Giglia Associate Director, Major Gifts Katie Keating Program Assistant Jennifer Paolucci Assistant Director, Special Events and Children’s Miracle Network

Public Relations and Communications 585.273.2840

Scott Hesel Sr. Public Relations Associate Jessica O’Leary Public Relations Associate Patricia Cruz-Irving Public Relations Associate Kathleen Mannix Art Direction & Design Cover photo: Matt Wittmeyer

Save the Date 2020 May 30 August 29 August 31 October 24

Stroll for Strong Kids Fairport Music Festival Golisano Children’s Hospital Golf Classic Golisano Children’s Hospital Gala

Find us on social media: facebook.com/GolisanoChildrensHospital twitter.com/urmed_gch instagram.com/urmed_gch Golisano Children’s Hospital

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University of Rochester Office of Advancement and Community Affairs 300 East River Road PO Box 278996 Rochester, NY 14627-8996

SAVE THE DATE ∙ 24th ANNUAL UR MEDICINE GOLISANO CHILDREN’S HOSPITAL

STROLL FOR STRONG KIDS & 5K RUN SATURDAY, MAY 30, 2020 ∙ GENESEE VALLEY PARK

Online registration is now open!

givetokids.urmc.edu/stroll Presenting Sponsor

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To make a donation online go to givetokids.urmc.edu

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