28
December
2018
|
01:00 PM
America/New_York

HSS Receives Half Million Dollar Grant to Investigate How to Improve Health Care System for Chronically Ill Adolescents

An indomitable spirit. An inquisitive mind. And a most compassionate heart. Bobby Menges possessed intelligence and maturity far beyond his years and left a lasting impression on almost everyone he met. Friendly and outgoing, he was the kind of kid who went over and sat with the shy student eating alone at lunchtime. 

A diagnosis of cancer, originally at age 5, and other health problems didn’t stop him from living life to the fullest. Despite the treatments, and despite multiple surgeries, a profound capacity for empathy compelled him to look outside of himself, and he sought to help others, according to Elizabeth Menges, Bobby’s mother. He devoted much of his life to community service and fundraising, hosting charity events and blood drives. 

Although Bobby passed away last year at age 19, his legacy lives on in a foundation that his family created in his memory. The "I’m Not Done Yet" Foundation, based in Garden City, helps adolescent patients with serious, long-term, and chronic illnesses transition from pediatrics to adulthood. 

As part of its mission, the foundation has pledged a five-year, $500,000 research grant to Hospital for Special Surgery (HSS) in New York City to establish best practices to meet the changing needs of young patients as they become teenagers and young adults in the health care system. 

At HSS, a specialty hospital dedicated to orthopedics, rheumatology and rehabilitation, doctors often follow patients from a very young age through young adulthood. The patient population includes babies born with musculoskeletal conditions such as cerebral palsy and young people with chronic rheumatologic diseases who are treated from the time they are children.  

Bobby recognized the need for health care providers to be mindful of the evolving psychosocial needs of young people with any chronic illness, not only cancer, according to Peter Menges, Bobby’s father. "HSS is a world class organization with the right resources, the right experience and the right expertise to undertake a comprehensive research initiative to really hone in on what this patient population needs, whether it’s physical space, specific services, a certain kind of care, or emotional support," Peter Menges said. "Although HSS will be the catalyst and epicenter of the research, our goal is to see the findings and best practices adopted throughout the U.S., and even worldwide."

The HSS grant, "The Bobby Menges ‘I’m Not Done Yet’ Initiative," will address the psychosocial challenges young patients face as they become adolescents and teenagers in the health care system. The foundation’s website explains: "Imagine you're a 19-year-old cancer patient. You've been in and out of treatment since the age of 5, and because you were diagnosed with a pediatric cancer, you continue to be treated as a pediatric patient. The supports for young children were just what you needed as a child, but now, as an adolescent, you have different needs: peace and quiet, a study room, a place to connect to Wifi... But often those services do not exist."

Dr. S. Robert Rozbruch will lead the research project at HSS. Chief of the hospital’s Limb Lengthening and Complex Reconstruction Service, Dr. Rozbruch met Bobby after a skiing accident and subsequent fracture, treatment at another hospital, and a complication left him with one leg that was shorter than the other. 

Without the proper and highly specialized care, Bobby’s leg could have been five inches shorter than his unaffected leg. After several surgeries by Dr. Rozbruch and successful treatment over more than 10 years, Bobby’s leg was straight and the proper length. During that time, Dr. Rozbruch worked closely with Bobby’s oncologists, and his cancer was in remission. 

Dr. Rozbruch developed a close relationship with Bobby and his family. "Bobby was a very special person, even when he was a child,” Dr. Rozbruch says. “He had a sparkle in his eyes. He had a positive outlook. He had a kind of wisdom and an inner peace that was very dramatic." 

"By the time patients turn 15, their needs start to change, and Bobby began to notice the void in health care as he got older," explained Elizabeth Menges. "He realized that some of his doctors didn’t understand some of the issues he faced. He wondered why doctors still addressed me, but not him when they spoke. Dr. Rozbruch was among those Bobby felt understood him. He said Dr. Rozbruch had a knack for that."

Dr. Rozbruch, who treats many patients starting at a young age, has been interested in the  developmental, emotional and psychological factors involved in caring for them as they get older.  

"The research initiative, which will include a psychologist, aims to evaluate the changing psychosocial and emotional needs of young patients in the health care setting and determine the best way to meet those needs. Surveys and questionnaires will be designed for past and current patients and their families," Dr. Rozbruch says. "We intend to publish and share our research findings with the broad medical community well beyond orthopedics and HSS." 

Carl Menges, Bobby’s great uncle, a life trustee of HSS and a significant financial supporter of the initiative, says the research grant is a way to honor Bobby’s memory. "The purpose of the initiative is to honor his deep concern for young people like himself facing complex conditions throughout childhood and young adulthood,” he said. “Bobby’s courage and spirit has been an inspiration to many, and this is a continuation of the work that he personally initiated and was so passionate about."

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