Experts from the NYU Langone Hospital for Joint Diseases’ Center for Children, part of the new Hassenfeld Pediatric Center, are finding an increasing need to guide parents and caregivers through the complexities of transitioning children suffering from chronic, complex conditions such as cerebral palsy (CP) from their pediatrician to an internist or other general practitioner who specializes in treating adults.
The U.S. Department of Health and Human Services 2005-2006 National Survey of Children with Special Health Care Needs estimated that 10.2 million children under 18 years of age, or 13.9 percent, in the U.S. have special health care needs. Of these children, only 41 percent received the services needed for transition to adult health care, work and independence. People with conditions like CP face a myriad of new health issues as they become adults, including early onset arthritis and osteoporosis, gastroesophogeal reflux, fractures and progressive spasticity.
“Many diseases once thought of only as ‘childhood diseases’, such as cerebral palsy, cystic fibrosis and congenital heart disease, can now be treated and managed into adulthood because of medical advances and technology innovation,” said Norman Otsuka, MD, professor, Departments of Orthopaedic Surgery and Pediatrics at NYU Langone and director of the Center for Children. “We now have a growing number of patients at an age where they should be transitioning from their pediatrician to a physician that treats adults – but their significant childhood-onset conditions can be challenging to a doctor who may have little experience dealing with the unique needs of these patients.”
As the increasing number of these children move from pediatric to adult care, adds Otsuka, it is important to educate parents and physicians about the special needs of these patients. It is also imperative that parents become active advocates and find appropriate experts to help build a long-term health plan. In order to begin planning for longer-term care as part of a meaningful and rich adult life, he suggests:
- Think ahead and plan for the transition early – start when the child is 13
- Discuss life expectations with your child and engage them as you build the plan
- Identify a health care provider willing to guide your family through the transition – and ask their help to identify an adult provider
- Ensure the plan is written down – and include a portable healthcare summary
“The initial goal for rehabilitation for children is to help them learn to move, communicate, and function successfully in school and everyday life – the transition to adult care can cause significant new stresses for the patient and their family,” added Joan Gold, MD, clinical professor and director of Rusk pediatric rehabilitation medicine, Hassenfeld Pediatric Center at NYU Langone, whose team also offers counseling and informational support groups for both parents and siblings of children in its pediatric rehabilitation program. “Because caring for these patients takes a great amount of time, finances and energy, it’s important to remember to provide support for everyone involved.”
HJD is one of the nation’s leading orthopaedic and rheumatologic specialty hospitals and is currently ranked among the nation’s top 10 hospitals for both orthopaedics and rheumatology by U.S. News & World Report “Best Hospitals 2011-2012” survey. HJD offers one of the most advanced orthopaedic programs in the region for musculoskeletal disorders and has the largest pediatric orthopaedic program in New York City. In addition, HJD is accredited by The Joint Commission and the Commission on the Accreditation of Rehabilitation Facilities (CARF).You can learn more about the Center for Children by going to http://centerforchildren.med.nyu.edu/ or calling 212-598-6205.