Creating and developing a comprehensive pediatric physical medicine program: A 10-year experience

Abstract

PURPOSE:

A multi-institutional and multidisciplinary pediatric physical medicine rehabilitation healthcare system was developed to meet regional patient needs.

METHODS:

A ten-year experience meeting regional patient care needs in northeast Florida and southern Georgia is described.

RESULTS:

A collaborative effort of multiple institutions resulted in the recruitment of a pediatric physical medicine and rehabilitation physician in June 2009, followed by planning stages that included initiation, development, and structuring of the program. Phase I: selection of clinic spaces, training of existing staff, creating specialized programs. Phase II: recruitment of an additional physician and dedicated advanced practice registered nurse, hospital nursing and radiology personnel training, development of protocols for specific disease entities, formulating a team approach for patient care, development of dedicated clinics for disease processes. Phase III: incorporating care into existing multidisciplinary clinics, education of existing physical, occupational, and speech therapists in dedicated remote clinics on early detection and management of specialty issues. Phase IV: ongoing education provided by rehabilitation faculty. Quality improvement aspects included outcome studies, coordinating with the Cerebral Palsy Research Network databank, and others. All phases overlapped in time and are ongoing, adapting to new needs.

CONCLUSION:

A collaborative program can be created to provide comprehensive pediatric physical medicine and rehabilitation in regions lacking such a system.

1 Introduction

Children with disabilities and chronic medical conditions have ongoing medical/social needs of varying intensity. The needs of these children and their families are best managed in a comprehensive multidisciplinary setting [1]. They have a variety of educational, social, and medical needs that may require access to specialists, subspecialists, support services, administrative agencies, and different programs [2, 3]. Comprehensive healthcare models for children with disabilities and chronic healthcare needs have been shown to lower health and social costs by reducing hospitalizations, as well as decrease the number of days lost from work by parents and care providers [1, 4–7]. There is a lack of facilities that provide pediatric comprehensive multidisciplinary health care to these youth in the continental United States as well as significant regional disparities in the availability of such care [8–10]. Those facilities that exist usually differ in their intrinsic structure according to the background and training of the various team members, and in evaluation and management protocols [11].

A comprehensive multi-institutional and multidisciplinary pediatric physical medicine program was created to meet the needs of children with disabilities and chronic health care conditions in the region of northeast Florida and southern Georgia. This information may be useful to others in creating similar programs, to meet the needs of youth in the continental and overseas territories of the United States.

2 Methods

A collaborative effort between the leadership of the University of Florida College of Medicine Jacksonville (UFCOMJ) and Wolfson Children’s Hospital (WCH)/Baptist Health of Northeast Florida established the Division of Pediatric Neurosurgery in 2003. At the time, there was no program in place for the care of youth with disabilities, spasticity, and chronic healthcare needs. An independent service identified there were approximately 2000 children with spasticity in northern Florida, but only 200 had been identified and cared for by the Nemours Children’s Health Division of Orthopedics. The lead author facilitated communications between the UFCOMJ Department of Pediatrics, WCH Administration, WCH Department of Rehabilitation, and the Nemours Children’s Health Division of Orthopedics. None of the three institutions had access to physicians that were fellowship-trained in pediatric physical medicine and rehabilitation (PPMR) or equivalent adult training. The WCH Department of Rehabilitation was structured with an administrative manager, outpatient clinics, and inpatient services provided by physical, occupational, and speech therapists with pediatric training. All parties agreed there was a great need for a PPMR program in the region. Ways to develop the program and its location were delineated. The successful recruitment of a PPMR physician occurred in June 2009, and the Physical Medicine and Rehabilitation Program was initiated within the UFCOMJ Department of Pediatrics Division of Community Medicine.

A detailed report on the initiation of the spasticity portion of the program was previously published [12]. In this report the authors performed an overview of the initiation, structuring and development of programs and services. The initial steps included identifying local needs, establishing outpatient clinic locations, providing inpatient consultations, training allied health personnel, and collaborating with existing programs. This was followed by training nurses, pediatric physical therapists (PPTs), and pediatric occupational therapists (POTs) for outpatient subspecialty clinics and inpatient procedures. The next step was the initiation of subspecialty physical medicine clinics, multidisciplinary clinics, and other programs. Subsequent steps included expansion of services, recruitment of additional personnel, and quality improvement, and these are ongoing. This is a report on systems formation and organization and does not involve patient research. Consequently, the Baptist Medical Center (BMC)/WCH Institutional Review Board waived review requirements.

3 Results

Described here are different phases of services and programs that overlapped in time and sequence to provide the matrix structure.

3.1 Phase I

A designated space for the outpatient clinic for PPMR was located within the University of Florida Multispecialty Clinic next to BMC/WCH. Administrative and nursing personnel were educated and trained on services to be provided by a PPMR physician. Outpatient facilities and inpatient consultations by the WCH Department of Rehabilitation had been previously established and were ongoing. These facilities were staffed by pediatric physical, occupational, and speech therapists. A PPMR physician provided education to the staff there, introducing areas of specialized disease processes such as, but not limited to, spasticity, cerebral palsy, brachial plexus injuries, and head traumas. Subspecialized clinics were created for spasticity, cerebral palsy, and brachial plexus injuries. Experienced PPTs and POTs were identified and assigned to each of these clinics. A PPMR physician provided inpatient consultations at WCH and to the pediatric ward at Brooks Rehabilitation Hospital.

3.2 Phase II

The Spasticity Clinic was opened in December 2009. In this clinic, children with spasticity are evaluated by a team consisting of a PPMR physician, a PPT, an advanced practice registered nurse (APRN), and a social worker. The initial clinics were held one day per week but have expanded to three days weekly due to increasing demand from referrals. Management decisions are made with the parent(s) and/or care providers in attendance. Medical reports are prepared and sent to the patient’s primary care provider. Authorizations for therapy and/or procedures are forwarded to the patient’s insurance for approval. For patients requiring PPT or POT, appointments are arranged at the pertinent regional outreach rehabilitation clinics of WCH. For those patients needing botulinum toxin injections, sessions are performed by the PPMR physician in the office or in the hospital setting, under minimal sedation or general anesthesia as needed, in a dedicated and monitored area. Baclofen trials are performed by a PPMR physician in an inpatient area. PPT is an integral component of the baclofen trials to determine the effect on spasticity and function. A multidisciplinary spasticity patient management conference is held once per month. Patients who have failed conservative management are presented in the monthly multidisciplinary conference. Participants include but are not limited to PPMR (session coordinator), pediatric neurosurgery, pediatric orthopedics, PPT, and social services. A pediatrician from the Center for Medically Complex Children is also invited, depending on individual patient needs. Videos of pre- and post-baclofen trials are reviewed. If an established patient requires further treatment, videos on their status are also reviewed. Treatment alternatives are discussed, and management recommendations made. The PPMR physician reports the team decisions to the parent(s)/caregiver(s). Patients previously treated with baclofen pumps, selective dorsal rhizotomies (SDRs), and/or related procedures, are also discussed. Details as to the initiation, development, and structuring of the spasticity program have been published [12]. A Spasticity Preoperative Clinic is held once per month; there, patients who have already been evaluated and discussed in the Spasticity Conference, and in whom SDR is indicated, have a joint preoperative session with their parent(s)/caregiver(s), PPMR and pediatric neurosurgery.

Expansion of PPMR clinics was accompanied by training hospital nurses, physician assistants (PAs), and therapists on specific disease entities and protocols for these programs. During this phase of recruitment, a program-dedicated APRN was hired, followed by the recruitment of a second PPMRphysician.

3.3 Phase III

3.3.1 Incorporating PPMR into existing clinics and program

In this phase, the PPMR physician and/or APRN became participants of pre-existing clinics and programs such as, but not limited to, the Spinal Defects Clinic [13], Pediatric Neurosciences Clinic [14], Center for Medical Complex Children, Neuro-Oncology Clinic, and Interdisciplinary Inpatient Rehabilitation Rounds (with PPT and POT). In addition, the physical medicine clinics for cerebral palsy and traumatic brain injury were increased to five days per week. Also, during this phase, a third APRN and dedicated nurse coordinator were recruited.

3.3.2 Training, education, and consultation with therapists in remote WCH rehabilitation clinics

The WCH Department of Rehabilitation has five remote clinic sites located in North Florida and South Georgia that are staffed by PPT and POT. PPMR physicians provide education and consultations to the personnel in those locations. Patients identified with need for further diagnosis, services, or procedures are referred to specific clinics and/or programs in Jacksonville.

Initial trials are ongoing with a telemedicine clinic based at WCH and remote WCH rehabilitation clinics. PPMR physicians at the base site consult and perform follow-up patient care visits with the PPT and POT in the remote clinics.

3.4 Phase IV

3.4.1 Education, providing regional resources to pediatricians, primary care providers, and others

Educational programs on subjects related to PPMR are ongoing. These are directed to pediatricians, primary care providers, school nurses, staff at Children’s Medical Services of Northern Florida and Southern Georgia, and Brooks Rehabilitation Hospital. These programs are but are not limited to regional courses on spasticity management, WCH Pediatric Grand Rounds, and subject-specific handouts. Consultations are provided for all infants in whom a high risk of cerebral palsy has been identified prior to NICU discharge. PPMR physicians and APRN/PAs provide education to the UFCOMJ residents in pediatrics and neurology, as well as medical students. Mayo Clinic Rochester residents in rehabilitation medicine who have requested an elective rotation in Jacksonville also participate in the education process.

3.4.2 Quality improvement, clinical research and further program development

Team members are currently developing evaluation and treatment paradigms for different forms of spasticity. PPMR physicians are collaborating with the Cerebral Palsy Research Network (CPRN) providing data on incidence and severity of spasticity, comparison of botulinum toxin injections to SDR, and other facets of spasticity management. PPMR physicians are also exploring treatment paradigms that will incorporate gait analysis studies in youth with spasticity, where indicated.

Pertinent and current scientific literature related to spasticity is periodically reviewed and discussed in the monthly spasticity team conferences, with the objective of maintaining an ongoing educational forum with updated subject matter for all team members. This ongoing learning experience is an attempt to facilitate a cohesive approach for the diagnosis and management of children with spasticity.

Application is currently in progress in partnership with the Department of Rehabilitation at the University of Florida College of Medicine Gainesville for a fellowship training program in PPMR. In addition, WCH administration has developed a plan to create an inpatient pediatric rehabilitation unit in collaboration with the current smaller and previously approved pediatric rehabilitation unit at Brooks Rehabilitation Hospital.

The initiation and continuous development of PPMR programs were carried out according to the certification and the guidelines of the Florida Department of Health and its agencies. The Commission on Accreditation of Rehabilitation Facilities (CARF) has their own specific guidelines for certification of inpatient rehabilitation facilities. As the approval process for the Florida Department of Health is addressed, the guidelines of CARF are being harmonized as an ongoing program.

Involvement of various administrative disciplines in patient care may interfere with cohesive management. This is addressed in part by the PPMR physicians cross reporting quality improvement care issues directly to the medical director of WCH and the chairpersons of the Quality Improvement Committees of UFCOMJ and Baptist Health. Face-to-face interaction in monthly quality improvement meetings also serves to maintain quality as well as ongoing continuing medical education.

4 Discussion

There is a nationwide shortage of fellowship-trained physicians in PPMR [8, 16]. At the same time, childhood disability is on the rise [17, 18]. There are an estimated 5.9 million children in the continental United States with limitations in at least one functional domain due to chronic illness [19]. There are only 246 fellowship-trained PPMR physicians available to provide care for them [20].

Comprehensive healthcare models for children with chronic medical needs have been shown to lower healthcare and societal costs by reducing hospitalizations, as well as reducing days lost from work by parents and care providers [1, 4–7]. They have also been demonstrated to reduce spending and use when compared with a matched comparison group [21]. Currently, there are a limited number of comprehensive multispecialty clinics for the care of these children in the continental and overseas territories of the United States. This is due to many medical and social reasons such as restriction by state and private health plans for full reimbursement for care providers that are “outside of the network”; lack of reimbursement for chronic health care coordination for individual patients; lack of reimbursement for services provided by non-medical staff members; as well as limitation on the number of services that can be billed for a single visit or day [3, 4].

Cerebral palsy is documented to have increased from 1.5 per 1000 live births in the 1960s to 2.5 per 1000 live births reported in 2006 [22]. Approximately 80 percent of youth with cerebral palsy have spasticity [23]. This can lead to a variety of secondary medical problems such as restriction in movement and ambulation, muscle contractures, chronic pain, and impairment of neurocognitive development [24, 25]. There are multiple treatment strategies for the management of spasticity, due to the varying degrees of its clinical forms, thus requiring a variety of medical personnel. Consequently, each child needs to be evaluated and treated with a specialized, multidisciplinary approach with dedicated medical and non-medical professionals. Such a multidisciplinary approach needs to provide programs for quality improvement and structured reporting mechanisms to maintain a cohesive and caring sequence. The increased incidence of spasticity needs a regional and structured management strategy to provide medical access to all those with spasticity. Currently, there is no uniform and systematic approach to treating youth with spasticity provided by healthcare agencies in the United States. There are established spasticity programs nationwide with longstanding healthcare delivery and documentation [26–31]. The limitation in the number of comprehensive programs for the management of youth with spasticity is not only due to the previously discussed conditions, but also to the limited number of trained medical and non-medical personnel in the same regions and/or medicalfacilities.

There is a pressing ethical reason for increasing access to care for the vulnerable population of children with disabilities [19]. Steps that could facilitate such care delivery include:

Identify the full extent and need for such services in the continental and overseas territories of the United States. Aid for achieving this may be found by employing the blueprint for an efficient and cohesive process, proposed by Coller, et al [32].

State and Federal Health agencies promote and facilitate the development of regional comprehensive programs.

Increase pathways for training physicians in PPMR, as proposed by Spierre and colleagues [19].

Pediatricians and healthcare professionals in positions of leadership at national and state levels should promote addressing these issues with health care agencies and the insurance industry.

It is the authors’ intent with this report to assist those who are considering comprehensive PPMR programs to meet their local and regional healthcare needs.

5 Conclusion

There are regions of the continental and overseas territories of the United States that cannot provide necessary care to children with chronic health care needs. A multidisciplinary, multi-institutional, comprehensive PPMR program can be developed in the presence of interested and motivated professionals. This requires administrative support and solid lines of interdisciplinary communication. Emphasis on the scientific basis, quality improvement, and ongoing learning by the members of the team is vital to the success of the program.