Medicine’s success in treating children with cerebral palsy (CP) and other serious congenital disabilities creates a new series of challenges as these individuals reach adulthood. As adults, they will need care from practitioners of adult medicine who can deal with the comorbidities that CP may present, and can respond to the crises (e.g. cardiac arrest) that may occur in adults but are rarely seen in children. Adult patients will need supports in a number of areas – e.g. finding employment, dealing with substance abuse, and drafting wills – that a social services system for children cannot provide. At the same time, these patients will continue to need the coordinated approach to care that pediatric medicine provides. This paper recounts how one institution, Gillette Children’s Specialty Healthcare, developed a program to respond to this need and presents a model for developing a transition program for adults with childhood-onset disabilities.
This paper describes how Gillette Specialty Healthcare developed a program to meet the specialty-care outpatient and in-patient needs of children with cerebral palsy (CP) and other serious congenital disabilities as they made the transition to early adulthood. The program began in 2001, with the opening of a pilot clinic for adult outpatients. Several years later, the hospital opened a small in-patient unit for selected patients. Careful planning, consultation with staff, and partnerships with caregivers were crucial to program development. Attention to the physical environment was also essential. Utilizing an integrative model of care, the patient, caregivers, and the program service providers create a comprehensive plan of care that reflects each patient’s needs, preferences, and priorities. The Gillette program, when evaluated over the long term, may serve as a model for meeting the emerging needs of the young adult with CP.
Initiating an outpatient transition program at a pediatric health facility
For several years, Gillette Children’s Specialty Healthcare deliberated over how they could help ensure that their patients with chronic conditions continued to receive high-quality care as they entered adulthood. They were particularly motivated by the fact that young-adult patients who had been treated at Gillette as children continued to return for care, opting for providers, and a facility familiar with disability rather than for age-appropriate settings in their communities.
In 2000, Gillette created a work group to guide an initiative to pilot-test an outpatient clinic for adults with CP. The pilot clinic, called Gillette Lifetime Specialty Healthcare, opened in October 2001. The care team was anchored by a physical medicine and rehabilitation specialist. Social workers, nurses, occupational and physical therapists, seating specialists, and orthotists met with each patient to screen for needs. In keeping with the adult model, patients and their caregivers had direct access to the allied health team members before meeting with the physician. The intent of this practice was to equip patients for active participation in decision-making and to establish a comprehensive care plan through education and structured interviews to screen for functional needs. Interventions focused on two goals: (1) maximizing current function; and (2) preventing or reducing the impact of secondary conditions, such as contractures from spasticity, pressure sores or wounds due to loss of sensation and immobility, shoulder or wrist pain from overuse, and fatigue from deconditioning.
That modest pilot effort, initiated nearly a decade ago, continues to grow. Today, the Lifetime Care Clinic treats adolescents aged 16 and older and adults with a variety of childhood-onset conditions, including CP, spina bifida, epilepsy, a history of polio, Rett and Down syndromes, and neuromuscular disorders. The specialist nature of clinic services provides a natural transition to adult care for individuals familiar with a rehabilitation model. One key program feature is the use of an integrated approach. Specialists collaborate with the patient and other caregivers to address the unique needs of each patient. The program practitioners respect what the patient and family bring to the healthcare encounter and value patient and family input into decision-making. Their team orientation and varied backgrounds complement each other. Partnerships among physician, patient, and family are essential.
An appropriate physical facility is equally important. In the exam room, patients may choose adjustable switches to dim or brighten overhead lights. Hospital beds and a 4- by 7-foot mat replace the standard adjustable-height exam table in several of the exam rooms, accommodating patients of various sizes and degrees of fragility. The tops of the exam tables were widened by six inches, giving a stronger sense of security for individuals with spasticity and allowing them to relax. Several of the tables have adjustable elevating headrests to ease breathing or allow eye-to-eye supported positioning for conversations with providers. Two side-by-side monitors at the computer desk can be pivoted so patients can view their medical record or images or view educational material. To assist with transfers, portable mechanical lifts, and in-ceiling lifts are used. Two of the lifts have scales integrated into them so that patients can be weighed within the privacy of the exam room as they transfer from their wheelchair to the exam table. For those who can stand, a scale with built-in stabilizing grab bars is rolled into the room. Recliners on wheels with 8-inch-wide side tables that fold up or down are popular. It is not unusual to see patients moved about in the recliners while their wheelchairs are being fitted with custom seating.
The program’s population base has expanded. About half of the patients were recent patients at Gillette Children’s hospital; the other half come from the community by self-referral or physician referred. Group homes in the area have benefited because their patients may now receive multiple services at a single location. Everyone involved in the patient’s care can talk face-to-face and generate a single, comprehensive plan for specialty care. Reducing the fragmentation of adult care significantly eases the burden of caregivers, who no longer have to play the role of interpreter of one specialist to the next while sorting the relevant from irrelevant information for communication.
Creating an in-patient unit for adults
Treating adults for their outpatient specialty-care needs led to a demand for in-patient services in Gillette’s pediatric hospital. Again, a work group met to decide on guidelines of a new, adult-oriented in-patient service. Given the exponential increase in risk factors at age 45, it was decided to limit surgeries and in-patient care to age 40, with careful screening for surgery and post-surgical care. The intensive care-unit set an upper age limit of 25. Types of in-patient care were narrowed to those conditions Gillette knows best – orthopedic, urological, and neurosurgical. A six-bed unit was opened following recruitment and training of a nurse manager and nursing staff with adult-oriented preparation. All rooms were set up as private rooms. A small space for rehabilitation therapy was allotted to provide a level of privacy not available in the pediatric gym.
Currently, the program aims to admit patients for whom the environment of care is particularly important. Criteria allow admission of patients undergoing elective operations such as baclofen pump surgeries, shunt revisions, detethering, and orthopaedic procedures. Patients with certain medical conditions for which Gillette has the appropriate resources, including wound care, aspiration pneumonia, and non-emergent gastrointestinal disorders, are also admitted. Any patient over the age of 25 who might need intensive care is admitted at another hospital.
For patients who have made the transition from pediatric to adult care, Gillette’s Adult General Medicine physician and a nurse practitioner serve as an admitting service; for all other patients, they provide a consulting service. Two physical medicine and rehabilitation specialists providing in Lifetime patient coverage can admit patients who have transitioned to adult care at the program; otherwise, these specialists provide a consulting service.
Learning from experience
For Gillette, the presence of adult patients has heightened attention on surgical readiness in terms of nutritional status, consideration for post-surgical care, and ability to participate in rehabilitation, as well as an adoption of a more direct communication between provider and patient or caregiver in the patient room on rounds. The costs to the patient in terms of pain and deconditioning-related losses due to post-surgical immobilization are considered when discussing extensive surgeries.
One unexpected lesson from this experience has been the degree to which pediatric and the adult specialists have learned from one another. Key learning points include: (1) earlier consideration for powered mobility in pediatric patients to preserve upper-extremity function and reduce loss of independence in self-care due to overuse syndromes; (2) development of staff training and early training in patient self-management of lower-body skin care to prevent wounds and pressure ulcers; and (3) the testing of DVD-delivered education as a means for reinforcing critical self-care skills for patients and caregivers, as well as for healthcare professionals.
Staff have found that much of the disability-specific education provided to its patients at early ages translates well to adult life. At the same time, adulthood brings new challenges. Earlier onset of aging impacts function, fatigue, and pain for individuals with childhood-onset conditions, even when the underlying condition is considered to be non-progressive. The patient’s support and safety net change, requiring a new model of care and support systems. Treatment and education must keep pace promoting successful management of symptoms and prevention of secondary conditions.
We have also found that it is important to take into account the size of the adult patient and to make them feel comfortable in the facility and when using equipment. The clinic was designed to meet the needs of older teens and adults. The hallways, examination rooms, and treatment spaces are large enough to enable adults to easily maneuver with crutches, walkers, gait trainers, or wheelchairs. Necessary equipment and staff are in place to lift, transfer, weigh, and otherwise accommodate adult patients. For example, scales attached to lift equipment can weigh someone who is unable to stand. This clinic serves as a model for safe patient handling.
Another factor to consider is that adult patients may need procedures, such as pelvic examinations, that are not necessary in the pediatric population and may not be available at their primary care site. Examination chairs at the Gillette Lifetime Adult Clinic recline, tilt, and provide support. Adjustable equipment makes pelvic examinations, radiography, and other procedures more effective and comfortable, especially for people who have spasticity or curvature of the spine. Staff can match patient and procedure-based need to exam rooms with adjustable-height hospital beds, an adjustable special procedures chair, 30-inch-wide exam tables, and a 4- by 7-foot mat table.
Gillette adopted new, age-neutral language for the organization’s educational and marketing materials where appropriate. Learning to think about what our patients will look like and how they will function when they are 30, 40, 50, 60, 70, or 80 years of age changes the way healthcare providers and families approach decision-making, planning, and implementation of life planning and care management. This is a shift for health-care providers as well as for families.
Independent living skills should be a focus in an adolescent and adult center care facility. Gillette’s therapy gym has space for exercise (including balance, strengthening, walking, and standing sessions), equipment evaluations, and range-of-motion assessments. The therapy kitchen allows for true assessment of capability and enables patients to practice cooking and other independent-living skills using adaptive feeding equipment and appliances. A treatment bathroom lets patients practice transferring to and from a toilet and bathtub, as well as using adaptive bath and toileting equipment.
In addition to the traditional vital signs of blood pressure and pulse, patients with suspected or known insensate lower extremities have their bare feet visually inspected and objectively tested with monofilament. A rating of risk is determined that may indicate a need for further education and evaluation, as well as suggest the frequency of return. Educational tools have been developed to assist patients in the prevention of wounds. (See training for patients at http://www.gillettechildrens.org, and select ‘Gillette Lifetime Speciality Healthcare’.)
When developing a program like Gillette’s, it is important to recognize that some adults with disabilities have never seen a specialty care provider. Specialists may not have been available to them, or their condition may not have affected their capabilities to the same degree in childhood as it does in adulthood.
Moving from a familiar, trusted relationship where parents take the lead to a new setting with new providers while considering legal guardianship questions and restrictions on insurance coverage for people over 18 can be frightening for our patients. The role of parents often changes, with the young people taking on more self-management responsibilities and engaging more actively in answering questions about their medical history and contributing to medical decision-making.
Unpaid internships for college students with disabilities can assist in this transition, both for other patients and the interns themselves. With defined learning objectives and specific deliverables, the young person contributes to a deepening of understanding of disability while gaining work experience in a professional setting.
For patients of all ages, care does not simply mean the treatment of a ‘condition’. Changes in pain, fatigue, or functional capabilities can cause emotional problems, such as sadness or a feeling of isolation. Gillette offers an environment where patients and caregivers can learn from each other. Patients are grateful for the opportunity to connect with others who understand their day-to-day lives. The multidisciplinary team views its patients holistically – their disability does not define who they are. Similarly, a person’s health may be impacted by their housing, transportation needs, emotions, or relationships.
The Gillette experience begins to answer the question, ‘How do we transition the maturing patient with CP to care from the adult medicine community?’ Gillette chose to do so by expanding a pediatric service into the early years of adulthood and beyond across the lifespan. It created policies and procedures governing eligibility for services and defined the spectrum of services to be provided.
Whether these are the ‘right’ policies and procedures and whether they can serve as a model for others will depend on Gillette’s long-term record, as well as the experience of other models that may be developed. Developing a consensus on policies and procedures that become the national or international norm is crucial to optimal long-term outcomes in these patients, so that training programs and family support networks can respond in an intelligent manner.
Gillette’s success builds on a pediatric foundation. Over the long term, the development of adult facilities may be required. Indeed, this is a near certainty, since the Gillette experience argues there is a limit to the professional ability of pediatric units to care for adult patients.
Gillette’s pilot begins to answer many of the practical questions that must be confronted. What facilities, equipment, and supplies are needed in a transition program? How should family needs be met? What information and resources will help the patients and their families navigates the transition and the years beyond? Perhaps most important, on what principle should care be organized? On this last question, Gillette provides an enthusiastic answer, drawn from pediatric success. For patients with serious life challenges, a coordinated approach to care is essential.