winter/spring 2017 V O L U M E 1 4 N U M B E R 1 news

Growing a Comprehensive Center of Excellence in Pediatric Heart Care

The 2014 affiliation that created UCSF Benioff Children’s Hospitals has generated numerous benefits for pediatric patients and their families. Those benefits are poised to dramatically multiply, as the hospitals forge a comprehensive center of excellence in pediatric heart care.

“We are folding our cardiovascular and genetic research efforts into a growing clinical program that includes two world-class sites for inpatient care and an expanding array of outpatient sites,” says Phillip Moore, MD, interim chief of pediatric cardiology at UCSF Benioff Children’s Hospitals.

Specifically, UCSF Benioff Children’s Hospitals are:

• Integrating their existing programs

• Building on long-standing affiliations with 20 outpatient and satellite clinics throughout the Bay Area and beyond

• Growing their staff of world-class pediatric heart surgeons

• Creating a full-service heart failure and mechanical assist program, which includes pediatric heart transplant

• Expanding patient access to translational research advances

Continuing a Tradition of Stellar Pediatric Heart CareFor decades, both pediatric cardiology teams have offered tertiary care close to home, as well as outpatient services at numerous satellite clinics. The inte-gration brings together widely recognized expertise in nearly all aspects of pediatric cardiology, including noninvasive radiology, intraoperative imaging, interventional cardiac catheterization and electrophysiology.

Howard Rosenfeld, MD, co-director of the Division of Pediatric Cardiology at UCSF Benioff Children’s Hospital Oakland, adds that the Oakland team – which has long provided expert fetal and neonatology interventions for life-

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C O N T E N T S

Perspective 2

Experience and Access Matter for Children withKidney Disease 2

Expanding Care for Children with Diabetes and Endocrine Disorders 4

Supporting the Survivors of Childhood Cancer 5

CME Courses 8

Perspective

In October 2016, the UCSF Division of Pediatric Nephrology celebrated its 50th anniversary with an academic symposium, followed by a family day celebra-tion with many former and current patients. The celebration did more than exemplify the patient-centered, leading-edge approach of the division; it also helped mark the ongoing integration of UCSF Benioff Children’s Hospitals in Oakland and San Francisco.

“This integration, which formalizes a long-standing relationship with our Oakland colleagues, is excit-ing and opens up possibilities to expand our nephrology program and extend access to many more patients,” says Interim Chief of Pediatric Nephrology Farzana Perwad, MD.

A Comprehensive Referral CenterA referral center covering a wide geographic area that includes California and Nevada but also extends to patients around the world, the pediatric nephrology program offers services that include:

• Acute and chronic hemodialysis

• Acute and chronic peritoneal dialysis

• Continuous renal replacement therapy

• Kidney transplant

Paul Brakeman, MD, PhD, directs a world-renowned kidney transplant team that has transplanted more than 500 children since its inception and includes transplant surgeons, nephrologists, nurses, nutrition-ists and social workers.

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It is not easy to integrate two world-class health care institutions, but when you share the vision of giving children throughout the Bay Area access to the very finest in pediatric care, that’s a powerful starting point and inspiration. We are using this inspiration to move as quickly as we can to build on the inherent synergies between UCSF Benioff Children’s Hospitals in Oakland and San Francisco, so we can better respond to every child and family who might need our expertise.

This newsletter offers a few examples. The lead story describes our progress toward the creation of a comprehensive center of excellence for pediatric heart care. To our already exemplary cardiology and cardiothoracic surgery expertise, we are adding a heart failure and transplant program so that we cover all aspects of care for children facing cardiovascular challenges.

Other stories in this issue describe why integrating programs in nephrology, endocrinology and cancer survivorship provides multiple benefits for patients with kidney disease, diabetes and other endocrine disorders, and cancer. The benefits include access to specialty care as close to home as possible, as well as the ability to more rapidly deliver research discoveries to patients’ bedsides.

Yet these articles offer only a glimpse into what we have set in motion. Increasingly, we will share research grants across our health systems and grow our efforts to personalize care for all of our patients, especially those from the Bay Area’s most underserved communities.

We are grateful to have you as our partners in realizing this vision.

Michael R. Anderson, MD, MBA, FAAPPresident UCSF Benioff Children’s Hospitals

Experience and Access Matter for Children with Kidney Disease

“We’ve transplanted children as young as 5 months of age for polycystic kidney disease whose enlarged kidneys compromised respiratory function,” says Dr. Perwad. “Without a trans-plant, these infants would not have survived.”

Child and Family- Centered Care Across the BoardFor medical complications related to kidney disease, expert nephrol- ogy teams also work closely with the patients’ families and pediatricians to ensure the best possible quality of life.

“This enables us to save the family time and resources because common pediatric problems can be managed in the local commu-nity,” says Perwad. “And the

integration means many of our patients can receive care closer to home, whether it’s in Oakland or one of our outreach clinics.” UCSF teams hold clinic days in locations that include Fresno, Modesto, Salinas, San Ramon, Santa Rosa and Walnut Creek.

The integration also broadens the reach of other special services that are difficult to find anywhere else. For example, Perwad and former Chief Anthony Portale, MD, staff a metabolic bone clinic.

“We specialize in seeing children with kidney stones caused by rare inherited diseases like primary hyperoxaluria and also see patients with rare bone diseases, such as X-linked hypophospha-temic [XLH] rickets,” says Perwad.

Traditionally, supportive manage-ment has been the sole option for XLH, which can manifest as early

as 6 months of age. “But we are the only West Coast center involved in a multicenter clinical trial using a novel therapy to treat children with XLH; the therapy preserves bone health by pre-venting the leakage of phosphorus from the kidney and boosts vitamin D hormone production.”

UCSF nephrologists also work closely with endocrinologists and cardiologists to diagnose and treat hypertension in children.

“We offer ambulatory blood pres-sure monitoring and long-term hypertension management, which includes dietary consultation, lifestyle changes and medica-tions to our patients in close collaboration with community pediatricians,” says Perwad.

For more information, contact Dr. Perwad at 415-476-2423.

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Farzana Perwad, MD

The celebration did more than exemplify the patient-centered, leading-edge approach of the division; it also helped mark the ongoing integration of UCSF Benioff Children’s Hospitals in Oakland and San Francisco.

At the family day celebration, kids enjoyed face painting, a photo booth with props, and cartoon visitors, plus health and safety activity booths presented by UCSF staff and local fire and police departments.

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Expanding Care for Children with Diabetes and Endocrine Disorders

“By creating one of the country’s largest pediatric endocrinology divisions, we expand our ability to deliver some of the most innova-tive and comprehensive care in pediatric endocrinology, which includes but goes beyond our world-renowned diabetes care,” says Stephen Gitelman, MD, chief of the Division of Pediatric Endo-crinology at UCSF Benioff Chil-dren’s Hospital San Francisco.

Leading Diabetes CareTo address a surge in new cases of type 1 and type 2 diabetes, both hospitals deliver sensitive, innovative clinical care that opti-mizes blood sugar control to eliminate long-term complications.

“Our type 1 patients take advan-tage of the latest technology advances – from the artificial pan-creas through increased use of insulin pumps and continuous glucose monitors – and can securely upload their data to the cloud, so we can provide feedback on daily diabetes management,” says Jennifer Olson, MD, chief of the Division of Endocrinology and Diabetes Care at UCSF Benioff Children’s Hospital Oakland.

Type 1 patients also benefit from joint research that is helping clini- cians screen and predict who might eventually get the condition. “We have some very promising preven- tion trials underway,” says Gitelman.

In addition, Oakland is a leader in tackling the emerging problem of type 2 diabetes in the pediatric population. “Researchers expect that half of all African Americans and Hispanics will develop type 2, which is a more toxic form of the disease in terms of chronic com-plications and coexisting medical conditions,” says Olson. “Our program draws on a team of specialists who deliver patient education and care in culturally sensitive ways.”

To prevent type 2 diabetes and associated conditions, the programs focus on the obesity epidemic through the Weight Assessment for Teen and Child Health (WATCH) Clinic in San Francisco and the Oakland-based Healthy Eating Active Living (HEAL) Program.

Finally, the merged division is creating a program that helps young people with diabetes transition into adult life and adult diabetes management.

From Gender Through Hyperinsulinism The division also hosts many other clinics across both settings to deal with a range of endocrine-related conditions.

• The Child and Adolescent Gender Center (CAGC) Clinic offers comprehensive medical and psychological care for gender-expansive children, adolescents and young adults at both facilities.

• Endocrinologist Roger Long, MD, co-leads the interdisciplinary

UCSF Skeletal Health Service. “Banking bone for later in life is important – and assessing bone health problems demands expertise, specialized equipment and an understanding of how to apply adult tests and treatments to children,” says Gitelman.

• A pediatric thyroid clinic deploys a specialized team that includes a radiologist and pediatric surgeons in addition to a pediatric endocrinologist.

• Pediatric endocrinologist Christine Ferrara, MD, brings rare expertise to an interdisci-plinary team treating congenital hyperinsulinism, a genetic disorder that causes profound and recurrent hypoglycemia.

“We also provide support for multiple other specialties where endocrine disorders can play a role, including long-term cancer survivors,” says Olson.

To refer a patient, call the UCSF Benioff Children’s Hospital San Francisco Access Center at 877-822-4453 or, in Oakland, call 510-428-3654.

Stephen Gitelman, MD

Jennifer Olson, MD

“Our type 1 patients take advantage of the latest technology advances… and can securely upload their data to the cloud, so we can provide feed- back on daily diabetes management.”

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Supporting the Survivors of Childhood Cancer

Treatment advances mean that nearly 80 percent of pediatric cancer patients are now expected to survive at least 10 years after diagnosis. Many never experi-ence complications, but nearly a third will eventually suffer from severe or life-threatening chronic con- ditions related to their therapy. These can include fertility problems, learning difficulties, mental and emotional health challenges, secondary cancers, treatment-related organ dysfunction and problems accessing health care and obtaining health insurance.

These challenges explain the importance of survivor- ship programs, which use medical care, education and research to help these young people prevent or manage the long-term effects of their cancer.

“The integration of these programs across UCSF Benioff Children’s Hospitals should yield benefits that include more efficient care delivery and opportu-nities to speed research discoveries to our patients,” says pediatric oncologist Robert Goldsby, MD, who co-directs the Survivors of Childhood Cancer Pro-gram with pediatric oncologist James Feusner, MD.

Access to ExpertiseRegular clinics at both locations offer patients and their families access to the following specialists:

• Pediatric oncologists

• Psychologists

• Social workers

These expert teams review risks, refer patients to subspecialists and support programs, provide infor- mation about other resources and discuss the latest research with patients and their families. Patients receive a concise summary of their disease, treatment histories and follow-up recommendations, which they can share with their primary care provider. This helps the primary care provider effectively monitor these patients for potential complications and appropriately counsel them about lifestyle choices.

The San Francisco survivorship program also con-nects adolescent and young adult oncology patients with in-person and online support through a social community and resource network called Intersections.

Conducting and Applying the ResearchFeusner emphasizes that, “Given our diverse popu-lation, it’s important that we deliver all of these services in culturally sensitive ways.” This applies to another key element of the integration: the enhanced ability to conduct and apply research on prevention, screening and quality-of-life issues, including the

Above: Drs. James Feusner, Robert Raphael and Dina Hankin with a survivor-ship program patient at the Oakland campus.

Left: Dr. Goldsby examines a survivorship program patient in San Francisco.

• Nurses

• Genetic counselors

• Nutritionists

need to tailor emerging strategies to underserved populations.

“For example, some patients may have genetic mutations that put them at risk for specific late effects of their cancer or treatment. A better under-standing of these molecular changes may lead to more effective screening programs for these at-risk patients,” says Feusner.

He says that obesity, which is particularly prevalent among some survivors and tends to be more perva-sive among underserved populations, is another possible research path. And Goldsby points to yet another research need: “Understanding the effect on family dynamics needs more attention in survivor- ship research,” he says.

Fostering Transitions“Another benefit of integration is that with the additional option of [UCSF Medical Center], we may be able to appropriately transfer more of our older patients – who are more properly cared for in an adult health care system – to adult cancer providers,” says Feusner.

Finally, Goldsby points out that because reimburse-ment can still be problematic, “Survivorship programs need philanthropic donations.” Each year, the program’s biggest fundraiser is the Swim Across America (www.swimacrossamerica.org), but there are other opportunities to give as well.

For more information, contact the UCSF Benioff Children’s Hospitals Survivors of Childhood Cancer Program at 415-476-7910.

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threatening heart conditions – is excited by the possibilities of join- ing forces with San Francisco’s Fetal Treatment Center (FTC), known as the birthplace of fetal surgery. “It significantly enhances what we can offer patients and families,” he says.

The FTC includes a dedicated Fetal Cardiovascular Program, which assesses and manages fetal and neonatal heart disease and features the latest technol-ogy for sophisticated imaging as early as the late first trimester. After birth, babies are treated

GROWING A COMPREHENSIVE CENTER OF EXCELLENCE IN PEDIATRIC HEART CARE

(CONTINUED FROM COVER)

through the two-campus Pedi-atric Heart Center, an integrated program providing care from infancy through adolescence.

Full Complement of Surgical OfferingsBoth facilities also have long-standing relationships with world-renowned pediatric heart surgeon V. Mohan Reddy, MD, chief of the UCSF Division of Pediatric Cardiothoracic Surgery.

Shunji Sano, MD, PhD, another internationally hailed pediatric heart surgeon, recently came aboard as well. Sano is renowned for:

• Contributions to the surgical treatment of congenital heart disease, which include the Sano procedure for hypoplastic left heart syndrome

• A total right ventricular exclu-sion procedure for isolated congestive right ventricular failure

Heart Failure, Mechanical Assist and TransplantSimilarly, as the clinical options for addressing pediatric heart failure and cardiomyopathies have increased – most notably through more child-friendly mechanical assist devices as a bridge to transplant – cardiology teams have sought ways to ensure all options are available to their patients.

At UCSF Benioff Children’s Hospitals, this effort led to the hiring of pediatric cardiologist Jeffrey Gossett, MD, who was recruited from the heart trans-plant program at the Heart Center at Ann & Robert H. Lurie Children’s Hospital of Chicago.

“Despite having many great ther-apeutic options, some patients still need to be considered for transplant,” he says. “Heart transplant is one key piece of building a center of excellence in pediatric heart care.”

Gossett is putting together an interdisciplinary team that includes cardiologists, a trans-plant surgeon, transplant coordinators, nurse practitioners, nurses, nutritionists and phar-macists. “Two world-class hospitals working together in local communities will help ensure more patients have access to appropriate evaluation and treatment,” he says.

Transplant surgeries will take place at Mission Bay, but the teams will hold clinics there and in Oakland as well – and provide outpatient support and follow-up care in close collaboration with community cardiologists and clinics throughout the Bay Area.

• Research on cardiac regenera-tion therapy, using stem cells to treat severe congestive heart failure by generating new heart cells

“An integrated center of excel-lence enables us to move these types of advances forward more quickly and extend them to more patients and families,” says Moore.

Phillip Moore, MD

V. Mohan Reddy, MD

Shabnam Peyvandi, MD

Howard Rosenfeld, MD

Hitendra Patel, MD

Shunji Sano, MD, PhD Jeffrey Gossett, MD

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“We are building a single heart center with a critical mass of high-level cardio- thoracic and pediatric cardiology services that bridges clinical care, research and community service.”

Translational Research for Patient BenefitTeams at both hospitals also relish the opportunity to bring research findings to their patients. There are already studies in place that follow patients after cardiac surgery to see the effects on developmental out-comes – and to test interventions aimed at improving outcomes.

For example, pediatric cardiolo-gist Shabnam Peyvandi, MD, is working with neuroradiologists, neurologists and pediatric inten-sivists to understand whether fetal interventions can reduce the risk for neurological abnor-malities common in children with repaired or palliated con-genital heart disease. Enhanced patient volumes, including an affiliation with Kaiser Permanente for pediatric cardiology services, aid studies like these.

Community ServiceAnother advantage of the inte-gration grows from the fact that as more children with congenital heart disease live into adulthood, there is a need for a compre- hensive follow-up program that bridges them into adult care.

“We are working on forming effective transition clinics at both Oakland and San Francisco,” says Moore.

Moreover, the numerous satellite clinics and consultation agree-ments – including telehealth – with facilities as far north as Eureka and as far south as Salinas ease access to world-class pediatric heart care for patients throughout Northern California.

“We are building a single heart center with a critical mass of high-level cardiothoracic and pediatric cardiology services that bridges clinical care, research and community service,” says interventional pediatric and neonatal cardiologist Hitendra Patel, MD, chief and co-director of the Division of Cardiology at UCSF Benioff Children’s Hospital Oakland.

“It is something bigger than either of us could have done alone,” says Rosenfeld.

For more information, contact the Pediatric Heart Center (Oakland) at 510-428-3380 or the Pediatric Heart Center (San Francisco) at 415-353-2008.

San Francisco

For more information, visit www.cme.ucsf.edu

Course Title Dates Location

10th International Conference March 9-11, 2017 Park Central Hotel Neonatal and Childhood San Francisco Pulmonary Vascular Disease

50th Annual Advances and June 8-10, 2017 Park Central Hotel Controversies in Clinical Pediatrics San Francisco

CME Courses

Cancer (Best in Bay Area)

Cardiology & Heart Surgery

Diabetes & Endocrinology (Best in Bay Area)

Gastroenterology & GI Surgery

Neonatology (Best in Bay Area)

Nephrology

Neurology & Neurosurgery (Best in Bay Area)

Orthopedics

Pulmonology

Urology (Best in Bay Area)

UCSF Benioff Children’s Hospitals, with campuses in San Francisco and Oakland, is among the nation’s premier children’s hospitals in all 10 pediatric specialties, according to the 2016-2017 Best Children’s Hospital rankings conducted by U.S. News & World Report.

The 10 recognized specialties for UCSF Benioff Children’s Hospitals are:

UCSF Benioff Children’s Hospital News

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505 Parnassus Ave., San Francisco, CA 94143-0940Accessing Our Care

San Francisco CampusTo refer a patient to one of our specialty practices, to admit or transfer a patient, or for consultation on a difficult diagnosis, call 877-822-4453 [877-UC-CHILD], available 24/7.

Oakland CampusFor information about referring a patient via MD Link, direct admissions and access to referral forms, visit www.childrens hospitaloakland.org/refer.

Physician Liaison Service Physician liaisons visit referring physicians and practice represen-tatives throughout Northern California and Nevada to learn more about their referral needs and to provide information about the services and faculty expertise available at UCSF Benioff Children’s Hospitals.

To contact the Physician Liaison Service: San Francisco campus, call 800-444-2559; Oakland campus, call 510-428-3043.

UCSF Benioff Children’s Hospital News is published semiannually for referring physicians by the Marketing Department of UCSF Medical Center. It is written by Andrew Schwartz.

Mark R. Laret, President and Chief Executive Officer, UCSF Health

Kim Scurr, RN, Vice President

Michael R. Anderson, MD, MBA, FAAP, President

Donna Ferriero, MD, MS, Physician in Chief

Hanmin Lee, MD, Surgeon in Chief

Images: UFO RF, p. 1; Majed Abolfazli, pp. 2-3, 5-6; Alain McLaughlin Photography, pp. 4, 7; UCSF Documents & Media, p. 6

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