By Julie Jung
At Children's Memorial Hospital, a variety of programs help patients and their families prepare for a longer life
Most people in the United States transition from a pediatrician to an adult care internist around their teen years. But for children who have grown up with chronic illness, it's not so easy.
It's not that internists do not want to help these patients. But many simply don't have the experience or training with adults with these illnesses. Until fairly recently, most children with chronic diseases such as spina bifida or cystic fibrosis did not live through puberty, let alone into their teen years and beyond. Certain illnesses that lead to retardation, such as phenylketonuria (PKU), were recognized as early as 1930, but until the 1960s there was no effective prenatal testing and accurate preventative care.
Recent significant advances in medicine, prevention, and genetic testing have allowed an entirely new group of patients with a variety of illnesses to survive to adulthood, where patients have to learn how to navigate issues such as managing their health in school and/or in the workplace. Children's Memorial Hospital in Chicago has been a trailblazer and is one of a handful of hospitals that are responding to this growing need with the development of transition programs for children aging out of pediatric care.
Hazel Vespa and Sandy Rubovits, both alumnae of Crown Family School's master's program, Class of 1968, are among the doctors, nurses, nutritionists, and therapists who have helped create Children's transitions programs. With intensive training in long-term counseling for chronic illness, they have helped hundreds of patients and their families meet the challenges of finding adultlevel care and social supports.
"As social workers, we are learning how to build bridges for children who grow up and have to work with an adult doctor," Rubovits says. "At Children's, our patients have a social worker, a nutritionist, a genetic counselor, but working with an adult doctor, they probably won't have that team of people working on their case anymore."
When talking about hospital social workers, Vespa likes to cite Richard Cabot, a progressive doctor and medical reformer from the early twentieth century, who said that their role is "a translator and communicator between two sides with differing perspectives." Hospital social workers guide families through both practical and psychosocial issues during the process of critical care. They do intake and discharge planning, provide psychosocial services, arrange for language translators, help families navigate the labyrinth of insurance and disability forms, and provide a constant, friendly face for families who often see many different doctors. "Social workers help families to cope as best they can," Vespa says.
During her master's fieldwork at the Jewish Family and Community Services, Vespa wrote her first research paper for a class taught by Professor Mary Lou Somers that framed the family unit as a small group—a unique perspective for its time. She says that this early research enabled her to later develop Children's programs for patients with PKU, a genetic condition where children cannot metabolize the protein phenylalanine. Treatment is entirely diet modification.
Based on her research and case experience, Vespa created the first family intake evaluation for PKU at Children's in the early 1970s. Now a senior social worker in the Division of Genetics, Birth Defects and Metabolism, and Family Services, Vespa sees newly diagnosed PKU and rare metabolic patients. One of her patients dubbed her "the grandmother of PKU," an honor she clearly enjoys.
Rubovits, a cardiology/heart transplant social worker, works with the Mended Little Heart Support Group at Children's, a program sponsored by the Division of Cardiology in conjunction with the American Heart Association. She helps parent support group leaders to secure speakers such as psychologists, cardiologists, and therapists to talk to patients and families facing organ transplantation. Groups such as Mended Little Heart give families the opportunities to build and provide a network of support.
Rubovits says that Children's legacy of hospital social work is due to its decades of field placement programs and student interns from schools such as SSA and hospital social work pioneers, including Betty Butler, Bernece Simon, Karen Teigiser, Shelton Key and Phyllis Wexler— Crown Family School graduates and instructors during the 1940s through the 1970s. Crown Family School has provided particularly strong consultation and direct field instruction to the student unit. "It has been a wonderful opportunity for students to learn—and to the benefit of the patients," Rubovits says.
Rubovits' own internship was at Children's, working with the "caring and insightful" Betty Butler. "We did groups on the medical floors with patients in ward service, at times with a mixture of medical diagnoses. First- and second-year Crown Family School students attempted to help patients express their feelings and responses about medical procedures, isolation of hospitalization, and fears evoked by their respective illnesses," she says.
Rubovits' initial transition program, which she led for five years, was a group for heart transplant patients who were graduating from high school. Starting in 1999, Rubovits helped the members of her group explore what their next steps could be in job training settings, in finding employment and in peer-group self reflection, with the focus on what was to be expected as an emerging adult needing continual care of a transplanted organ.
Building from the heart-transplant group and other similar programs, Children's has instituted an institutional dictum over the last decade to prepare all patients early for transition in care. These transitions programs specifically aid patients in their move to adulthood and in dealing with adult self-care issues, such as cooking for themselves if a patient has special dietary needs.
Children's is developing transition programs across the multiple specialties of chronic diseases, including liver transplant programs, Marfan syndrome (a genetic disorder that affects the connective tissue), epilepsy, juvenile rheumatoid arthritis, spina bifida and PKU.
"By empowering patients during adolescence, we believe that they will be set up for success in managing their condition not only in the adult medical care setting but also in real life situations." says Sarah Ahlm, the program manager in the hospital's Epilepsy Center and a 1999 Crown Family School graduate.
A patient starts and may utilize a transition program at different times depending on their particular developmental needs. The program for a disease such as PKU starts early, initially teaching parents how to properly feed their newborns and later teaching pre-adolescents (ages 11-13) how to make healthy choices on their own. In contrast, an adult PKU patient who was not diagnosed early and faces cognitive problems will need ongoing counseling to address athome care and employment or disability options.
Social workers also help parents deal with chronic grief. Some of this work is done in transition program forums of support for families and patients during diagnosis and treatment, such as Children's all-volunteer ParentWISE program. "Only a parent or a patient who's been through this can relate to others in the same position. My job is to bring these people together so that they feel as if they have a community and a circle of support," Rubovits says.
Rubovits says her job provides enormous satisfaction, such as when a former heart patient came back to Children's to mentor and support younger patients. Now seventeen, the young man wrote a letter about how he was thankful for his care and that because his younger brothers had been tested, they did not have to endure what he did.
Vespa, whose PKU parent group held their 40th annual meeting this year, also says that watching her patients become part of the hospital's family is part of what she enjoys about the work. Her oldest PKU patient is in their 50s now, and she has watched many grow up to have their own children.
Lauren Leviton manages the Adult PKU Outreach Program for individuals living with PKU at Children's, which was funded by a grant from BioMarin Pharmaceuticals Inc. Initiated by Dr. Barbara Burton, M.D., the program's goals include educating adult patients about the neurocognitive and psychiatric consequences of elevated blood phenylalanine levels, sharing new treatment information, providing referrals to comprehensive medical care and linking patients to networking opportunities with other adults with PKU. So far, the clinic has connected with 59 patients previously lost to follow up care.
Last year, Vespa and Leviton cowrote a supplemental grant request to the PKU Organization of Illinois. As a result, the hospital has been able to support payment for medical services for some of the most vulnerable patients in the program—those in their 20s who are not insured, either because they've aged-out of state insurance or are no longer eligible to be on their parents' insurance plan.
Leviton, who graduated from Crown Family School with a master's in 2008, is one of a small army of social workers trained by Vepsa and Rubovits over the years. "People really need to have first-hand experience with patients as there are so many things that play into critical care," says Leviton, who also credits Assistant Professor Malitta Engstrom's Family Systems: Health and Mental Health class for providing a framework in how the course of illness applies to living with a diagnosis.
Leviton says she would like to see the PKU program evolve by creating separate meeting tracks for patients who learned they had PKU as a result of available newborn screening and for families of individuals who were diagnosed with PKU before newborn screening was available because some of their concerns and perceptions about their disease are different. She also believes that giving pre-adolescents opportunities to meet one-onone with their doctors (and without their parents) will help them to take further ownership of their own health care
Family-centered care, new innovations in counseling and a more evolved understanding about how to deliver chronic care has altered the domain of hospital social work. Vespa says that in training younger social workers, for example, she's finding that she can build on their Internet savvy and strengths in social networking to optimize the one-on-one social worker to patient relationship. This is particularly important because insurance companies are either severely restricting or do not allow for longterm counseling for chronic care.
"As social workers, we are able to give parents and children comprehensive care and help families to feel not so helpless," Rubovits says. It seems that hope, in the absence of a cure, is one of the best medicines.