Introduction
The American Board of Physical Medicine and Rehabilitation (ABPMR) describes pediatric rehabilitation medicine (PRM) as “the subspecialty that uses an interdisciplinary approach to address the prevention, diagnosis, treatment, and management of congenital and childhood-onset physical impairments including related or secondary medical, physical, functional, psychosocial, cognitive, and vocational limitations or conditions, with an understanding of the life course of disability.”
The ultimate goals of a pediatric rehabilitation program are to help pediatric patients reach adulthood as happy, healthy, and independent as possible. This is usually achieved by simultaneously enhancing their health, helping them avoid secondary complications of their condition, and maximizing their function either through regaining skills after injury or functional loss (rehabilitation) or by learning new skills in the context of a previously present disability (habilitation).
History of Pediatric Rehabilitation
Applying the principles of rehabilitation medicine to the care of children became critical in the mid-20th century when the polio epidemic reached its peak. Early PRM physicians such as Dr. George Deaver (who pioneered the concept of activities of daily living and was one of the founding members of the American Academy for Cerebral Palsy) and Dr. Jesse Wright (inventor of the rocking bed used for respiratory support) combined a multidisciplinary approach to care with the rehabilitation technologies of the day to help children stricken with the disease regain their independence in self-care skills and mobility.
In the 1970s, physiatrists who were interested in pediatric rehabilitation joined together to offer educational programs on pediatric topics and host networking opportunities at national meetings of the American Academy of Physical Medicine and Rehabilitation (AAPMR). In 1983 this group became the AAPMR’s Pediatric Special Interest Group. Two decades later, in 2003, the ABPMR began offering subspecialty certification in PRM “in order to enhance the quality of care available to individuals with pediatric rehabilitation needs and their families.”
Current Distribution of Prm Physicians
While there are over 10,000 board-certified physiatrists in the United States today, less than 3% of them are PRM physicians. As can be seen in Table 24.1 , there is also a significantly unequal distribution of these subspecialists across the country with four states having more than 20 PRM physicians each while thirteen states have none at all. Even in states with practicing PRM physicians, children with disabilities living in rural areas often have to travel long distances to gain access to their care.
| 293 Pediatric Physiatrists | |||||
|---|---|---|---|---|---|
| Alabama | 5 | Alaska | 0 | Arizona | 3 |
| Arkansas | 1 | California | 23 | Colorado | 12 |
| Connecticut | 1 | Delaware | 5 | DC | 6 |
| Florida | 10 | Georgia | 3 | Hawaii | 1 |
| Idaho | 2 | Illinois | 14 | Indiana | 4 |
| Iowa | 1 | Kansas | 0 | Kentucky | 2 |
| Louisiana | 3 | Maine | 0 | Maryland | 9 |
| Mass. | 6 | Michigan | 11 | Minnesota | 19 |
| Mississippi | 0 | Missouri | 10 | Montana | 0 |
| Nebraska | 0 | Nevada | 0 | New Hampshire | 0 |
| New Jersey | 12 | New Mexico | 0 | New York | 22 |
| NC | 8 | North Dakota | 0 | Ohio | 29 |
| Oklahoma | 0 | Oregon | 3 | Pennsylvania | 15 |
| Rhode Island | 0 | SC | 1 | South Dakota | 2 |
| Tennessee | 1 | Texas | 22 | Utah | 5 |
| Vermont | 1 | Virginia | 4 | Washington | 9 |
| West Virginia | 1 | Wisconsin | 6 | Wyoming | 0 |
| Puerto Rico | 2 | ||||
There are far fewer physicians practicing PRM outside the United States. Table 24.2 lists the number of Physical Medicine and Rehabilitation providers from throughout the world who are members of the American Academy for Cerebral Palsy and Developmental Medicine, an international organization “dedicated to providing multidisciplinary scientific education and promoting excellence in research and services for the benefit of people with and at risk for cerebral palsy and other childhood-onset disabilities” ( https://www.aacpdm.org/about ; Accessed 31.01.21).
| 307 Member Listings | |||||
|---|---|---|---|---|---|
| Argentina | 1 | Armenia | 1 | Australia | 6 |
| Brazil | 1 | Canada | 12 | Costa Rica | 1 |
| Ghana | 1 | Israel | 2 | Italy | 1 |
| Japan | 2 | Korea | 9 | Luxembourg | 1 |
| Mexico | 7 | Netherlands | 9 | Philippines | 1 |
| People’s Republic of China | 3 | Poland | 3 | ||
| Qatar | 1 | Spain | 1 | Taiwan | 2 |
| Thailand | 1 | Turkey | 2 | United States | 239 |
Telerehabilitation offers a means to overcome this disparity in the geographic distribution of PRM specialists and improve access to care for children with disabilities and their families regardless of where they live throughout the world.
Pediatric Conditions That Most Benefit From Telerehabilitation
Although procedures most often performed by PRM physicians (like botulinum toxin injections and baclofen pump refills) cannot be offered directly through telerehabilitation, the majority of patients with conditions commonly seen in a pediatric rehabilitation practice can be served well, saving them and their families significant amounts of time, travel, and cost. Table 24.3 provides a list of common conditions seen in PRM that can benefit from telerehabilitation interventions.
| Anoxic brain injury | Limb deficiencies |
| Cerebral palsy | Neuromuscular diseases |
| Cognitive assessments | Spasticity management |
| Concussion | Spina bifida |
| Counseling | Spinal cord injury |
| Feeding difficulties | Stroke |
| Gait abnormality | Traumatic brain injury |
Pediatric Telerehabilitation
History
In the mid- to late-1990s, advances in two-way videoconferencing technologies helped lead to the establishment of the first telerehabilitation programs for children with special needs in the United States.
In 1994 the Specialized Interdisciplinary Consultation Telemedicine Project, one of the five clinical projects that were part of a larger National Library of Medicine grant, provided real time, multidisciplinary team-to-team consultation services for children with special health and behavioral needs in rural Iowa communities, particularly in their school environments. This clinical research program placed an emphasis on evaluating the efficacy of the telerehabilitation medium for coordinated, team-to-team–based care for children with disabilities. While some parents (10%–12%) reported technical problems during the telerehabilitation sessions, usually with poor audio and camera movement, the vast majority of parents felt the quality of care provided was good to excellent and reported they were satisfied or very satisfied with the care their child received via telerehabilitation.
In 1995 the Children’s Medical Services of the State of Georgia contracted with the Department of Pediatrics of the Medical College of Georgia (MCG) and the MCG Telemedicine Center to develop telemedicine programs to provide subspecialty care for children with special health care needs. Most of these telemedicine consultations (35%) involved pediatric allergy/immunology. Other subspecialties included pulmonology (29%), neurology (19%), and genetics (16%). Overall, families were satisfied with the services they received and the authors concluded that telemedicine was “an acceptable means of delivering specific pediatric subspecialty consultation services to children with special health care needs, living in rural areas distant to tertiary centers.”
In 1996 and 1997, two remote telemedicine clinics were established at nursing schools and linked to an interdisciplinary team at the University of Texas Medical Branch to improve access for children with special health care needs living in Texas. These clinics were evaluated to determine if the tertiary interdisciplinary team could effectively assess and plan interventions for children with special health care needs and to assess patient and caregiver satisfaction with this intervention. The interdisciplinary team and the patients and their families were highly satisfied with this arrangement.
TelAbility was the first pediatric telerehabilitation program created by, and provided through, a PM&R department. Founded in 1998, this community-oriented, interdisciplinary program used multiple internet-based telecommunications technologies (including real-time video clinics, multipoint virtual interdisciplinary educational programs, searchable online expertise directories, chat rooms, listservs, and more) to improve the lives of young children with disabilities. The goal of this program was to use telerehabilitation to provide comprehensive, coordinated, family-centered care to children with disabilities across the state of North Carolina and to offer education, training, and peer support for people who cared for them. Instead of using the hub-and-spoke model popular at the time, TelAbility used a lattice-like network of early intervention centers, specialized day care centers, and private pediatric therapy offices to build a virtual community of caring that shared knowledge, resources, and access points.
Throughout the first two decades of the 21st century, growth of pediatric telerehabilitation programs was slowed by restricted payment for services, liability and licensure issues, concerns over HIPAA compliance, and other constraints. Many of these limitations were subsequently removed by the Coronavirus Aid, Relief, and Economic Security Act of 2020, leading to accelerated adoption in the use of virtual medical and therapy services for children with disabilities and their families. While it is not yet known if these new policies will outlast the state of emergency related to the COVID-19 pandemic, more and more people have been given the opportunity to provide or receive telerehabilitation care and have discovered its many benefits.
Performance of Telerehabilitation Using Different Techniques in this Specialty
Like other forms of telerehabilitation, pediatric telerehabilitation can be offered through multiple delivery mechanisms, including asynchronous/store and forward, real-time virtual visits, and remote monitoring.
In asynchronous/store and forward telerehabilitation, photos, videos, and other recordings are captured, stored, and sent to providers who then review them and provide interpretation and/or feedback at a later time. Examples include a photo of a pressure ulcer or ill-fitting brace or a video of a child’s gait pattern or movement disorder. This approach can be more effective than an in-person examination in some cases because it allows for the capture and sharing of an action or movement that might not be present during a clinic visit. It also eliminates the chance that an examination may be limited by a pediatric patient’s diminished ability to cooperate due to a change in their daily routine (having to travel to a doctor’s office), an unfamiliar environment (the examination room in a doctor’s office or medical center), and/or the presence of a stranger (the examiner).
Virtual visits offer the opportunity for two-way interactions between the provider and the patient/patient’s family. This allows for real-time feedback between the two sites that can optimize the examination, offer virtual mentorship, facilitate education, and provide an enhanced understanding of the patient’s natural environment. Because it eliminates the need to travel to a distant location, virtual visits often enable other providers or family members to attend the visit, improving communication, care coordination, and compliance with recommendations.
While not yet as commonly utilized, remote patient monitoring (RPM) uses digital technologies to collect health-related data from individuals in one location and electronically transmit that information securely to health care providers in a different location for their assessment and recommendations. This can enable providers to monitor a patient’s health and functional status to anticipate and prevent secondary complications of their condition and optimize their independence. RPM is already being used to facilitate follow-up of neonatal intensive care unit (NICU) graduates, monitor cardiac function in pediatric patients with congenital heart disease, and follow patients with seizure disorders.
Wearable technologies that seamlessly download data into a parent’s smartphone or physician’s secure electronic medical record will soon enable providers to keep track of their patient’s activity levels (heart rate, step counts), range of motion (through goniometric measuring devices embedded in clothing or through real-time video movement analysis at home or in the community), participation in the community (through GPS-tracking devices), and more.
Practice
Use of Pediatric Telerehabilitation for Initial Consultation Purposes
These delivery systems can be used in a myriad of ways to provide comprehensive consultations, problem-focused services, therapy services, education, mentorship, and support.
Comprehensive Consultations
Telerehabilitation allows experts in PRM to provide direct comprehensive consultations to their patients in their homes, schools, early intervention centers, pediatric long-term care facilities, and other locales (the author has personal experience in providing teleconsultations to patients on the beach, in the parking lot of a fast food restaurant, and even in the middle of a corn field!). While these locations may be more convenient for the family, each presents a unique challenge to gather sufficient information through parent and patient interview and virtual examination through observation of the video.
Tips for providing direct consultations include positioning the patient and camera to optimize the video and audio input (still often limited by the family’s internet speeds at home or on the road) and utilizing a second person (or a robotic mount with remote pan-tilt capability) to hold the camera/phone while the first facilitates the examination (imagine trying to perform a range of motion assessment with one hand while holding a phone in the other—doable, but suboptimal). Instructing the parent to flip the camera on the phone from mirror to distant image can improve the quality of a gait evaluation (which should be repeated to include front, back, and side views of the patient walking). The use of peripheral devices (e.g., thermometer, otoscope, stethoscope) attached to the parent’s phone can enhance the cardiac, pulmonary, and ear, nose, and throat examination in a cooperative child.
When providing pediatric telerehabilitation consultations at a facility, other members of the child’s care team can be invited to attend and contribute to an interdisciplinary discussion of the patient’s needs. Local care providers (including nurses, therapists, child service coordinators, and others) can provide valuable information and help facilitate the examination.
There is also a place for pediatric telerehabilitation consultations in the medical inpatient and outpatient settings. Inpatient consultations to an NICU where a child with spina bifida was just born or to a pediatric intensive care unit to help treat a patient with a traumatic brain injury or spinal cord injury are just a few examples. In the outpatient setting, pediatric telerehabilitation consults directed to pediatricians can help augment the care the child receives in their medical home.
Problem-Focused Services
Potential applications for the use of pediatric telerehabilitation are limited only by the availability of appropriate technology, sufficient connectivity, and the imagination of the practitioner. Here are just a few of the many problem-focused services that can be provided (and sometimes enhanced) through pediatric telerehabilitation.
Brace Checks
With appropriate lighting and camera angles, both asynchronous and real-time interactive videoconferencing can enable a clinician to evaluate the size and fit of an ankle foot orthosis (AFO) or other types of brace and determine if a new one is indicated.
Pressure Ulcers
In similar fashion, pressure ulcer size can be evaluated and monitored through store and forward photo capture or through real-time facilitated examination. As technology continues to improve, real-time and/or remote monitoring of skin pressure mapping at brace or wheelchair cushion interfaces may reduce the incidence of pressure ulcer development.
Movement Disorders
Parents of children with disability sometimes report concerns about their child’s new or chronic, but intermittent, movement disorder that is not present during an in-person clinic visit. Telerehabilitation technologies (real-time videoconferencing, asynchronous sharing of video recordings) enable the parent or local provider to capture a concerning movement pattern and share it with the clinician who can then make a diagnosis or suggest further evaluations such as EEG monitoring for a possible seizure disorder.
Gait Evaluations
In certain cases (a reluctant child, a specific terrain, etc.) telerehabilitation can enable a clinician to view a patient’s gait more fully than during an in-person visit. Asking the child to give a tour of their house, walk to their room, or walk up and down the stairs at home can offer more information about the child’s function in their natural environment than merely having them walk back and forth down a clinic hallway. Future technology may even allow for more objective kinematic and kinetic evaluations as telerehabilitation moves gait laboratories out of the confines of academic research centers and into the community.
Spasticity Management
While botulinum toxins cannot be virtually administered (yet), there is still a role for pediatric telerehabilitation in spasticity management. Instead of asking patients to return to the office to follow up on the effects of a toxin injection, one should consider scheduling a telerehabilitation visit facilitated by the patient’s local therapist who can share their experience treating the child, provide a proxy assessment of tone using the Modified Ashworth Scale, and enable a visual assessment of the child’s range of motion and movement patterns.
Care Coordination
Telerehabilitation can support and enhance the interdisciplinary nature of pediatric rehabilitation through multisite videoconferencing that facilitates communication and care coordination among PRM physicians, primary care providers, other subspecialists, school personnel, local therapists, child service coordinators, family members, social workers, psychologists, nutritionists, and others.
Use of Pediatric Telerehabilitation for Different Types of Therapy
Like telemedical services, pediatric therapy services can be provided (and sometimes enhanced) through the use of telerehabilitation.
Pediatric occupational therapists, physical therapists, and speech-language pathologists have been providing telerehabilitation therapies for children with disabilities for over a decade in rehabilitation centers, schools, and private practice settings.
Here are several commonly used pediatric telepractice interventions:
Virtual Therapy Services
Prior to 2020, virtual therapy services performed in the school setting were often provided to overcome a paucity of school therapists, especially in more rural areas. Private speech-language pathologists were contracted to offer services as part of the child’s individualized education plan where they provided visual and auditory information via videoconferencing and computer-based programs to help with cognitive, oral motor, and assistive technology training. Post-COVID-19, school systems, early intervention centers, and private pediatric therapy practices have embraced the use of teletherapy services to continue to serve their patients and their families. In-person and hands-on therapy has shifted to virtual observation, coaching, and home exercise program instruction for the child’s caregivers. A recent systematic review of teletherapy practices found that using a coaching approach during sessions and scheduling regular virtual therapy visits (as opposed to having the family contact the provider on an as-needed basis) were more frequently associated with improved outcomes.
Home Evaluations
Before discharge from a pediatric acute inpatient rehabilitation program, family members can provide inpatient therapists with a tour of the child’s home/discharge destination so that therapists can identify potential physical barriers, arrange for necessary equipment and/or modifications, and work together to ensure that proper family training has been performed to optimally support the child’s return home. In the outpatient setting, therapists can use these virtual home tours to order appropriate equipment like lifts that work well in the patient’s bedroom and bath/shower chairs that fit well in the child’s bathroom.
Feeding Therapy
Pediatric feeding therapy sessions, often provided by pediatric speech therapists and occupational therapists, can be extended into the home through an arrangement where therapists can mentor and coach parents as they watch and listen to them feed their child. Positioning, equipment, and behavioral modifications can be made in real time as the therapist evaluates a feeding session and provides feedback to the parent to optimize feeding safety and efficacy.
Mobility Assessments
Whether the patient ambulates or uses a wheelchair for community mobility, new wearable technologies and other remote monitoring devices will allow providers to follow their patient’s activity levels, gait parameters, and mobility in the community. Goniometers, accelerometers, and GPS-tracking devices will be linked to a phone-based app and then downloaded to a cloud database, enabling the recording of movement in the child’s various natural environments (home, school, community) at various times of the day, with no direct observation required.
Behavioral Mentoring/Coaching for Parents
Pediatric psychologists and behavior therapists can use real-time videoconferencing to evaluate episodes and offer training and support to parents as they work to decrease behavior challenges that can arise around bedtime routines, potty training, and mealtimes. They can also use telerehabilitation technologies to coach parents and other caregivers to help reduce self-abusive behaviors, as well as aggressive behaviors toward others.
Nutritional Assessment and Coaching
Telerehabilitation technologies also enable pediatric dieticians to provide patient and family-centered nutritional counseling and coaching. During a home visit, the dietician can even peer into the family’s pantry and refrigerator to get a better idea of the foods the family keeps at home. This approach can supplement and often confirm the self-reports of patients and their families, leading to a more useful assessment of the child’s and family’s home diets.
Use of Pediatric Telerehabilitation for Education, Mentorship, and Support Programs
Telerehabilitation technologies provide a convenient way for pediatric rehabilitation physicians and therapists to access education, mentorship, and support in their chosen fields. In the current environment of limited travel due to the COVID-19 pandemic, webinars, listservs, and virtual conferences and meetings have become the de facto means to connect, share information, and collaborate with other providers within and between institutions, disciplines, and countries.
Parents also benefit from online resources and programs. Sources for web-based education, mentorship, and support for parents include national and international organizations that provide information about their child’s condition, information on related resources, online support groups, virtual mindfulness sessions, and community listservs.
Finally, pre-teen and teenaged patients can use web and smartphone apps to learn more about their condition, participate in virtual support groups, and get online counseling as they navigate their way through childhood and transition to life as an adult.
Special Considerations in Pediatric Telerehabilitation
As the popular pediatric saying goes, “Children are not just small adults.” In a similar fashion, pediatric telerehabilitation differs from other types of telerehabilitation in many ways, including the age of users, their comfort with technology, end-user locations, time savings, informed consent, and more.
There are currently two major generations of parents of children with disabilities—Generation Xers who are somewhat facile with technology use, and Millennials who grew up as digital natives and who have easily adopted new technologies and information-sharing platforms. While some older adult patients may struggle with telerehabilitation technology, most parents of children with disabilities are familiar with web-based videoconferencing, phone apps, and digital life. This makes it easier to enroll users in pediatric telerehabilitation programs, as long as they have sufficient interest in participating, and sufficient bandwidth at home. Once a visit has begun, younger parents and their children are usually comfortable with virtual interactions and are more tolerant of, and better able to correct, occasional technological problems that may occur during a session.
Potential originating sites for pediatric telerehabilitation visits mirror the common locations where children with disabilities go each day to receive care and education. Pediatric therapists who are required to provide early intervention services in the child’s natural environment can use telerehabilitation to provide visits in the child’s home and day care center. Other effective sites for telerehabilitation service provision include early intervention centers and schools where school personnel can facilitate a medical examination, and therapists, social workers, audiologists, and others can work virtually with special education teachers to provide related services mandated under the Individuals with Disabilities Education Act.
Health care locations that are useful originating sites for telerehabilitation services include primary care offices, pediatric specialty clinics, rural health care centers, and pediatric nursing and long-term care facilities. Other common sites include patients’ homes (where proxy examinations can sometimes be facilitated by home health care providers), and wheelchair clinics or prosthetic/orthotic practices where the virtual provider can offer their expertise as part of a multidisciplinary fitting team. Other, less common (and less ideal) telerehabilitation examination locations provided by the author have included inside family cars (some parked, others driving down the highway!), and a farmer’s field, where the examiner could assess the effectiveness of a child’s AFO as the patient walked on uneven terrain, stepping over and between rows of tobacco plants.
When calculating time savings related to pediatric telerehabilitation services, there are numerous beneficiaries of a virtual visit. The provider saves travel time (especially important for early intervention professionals who sometimes travel great distances only to discover that the child/family are not available for a home visit), the parent(s) save both travel time and time missed from work, and the school-aged child avoids missing classes. As mentioned previously, asynchronous store and forward telerehabilitation can help capture a finding that might otherwise be unavailable in a child who is unwilling to cooperate during an in-person examination.
Since children are not allowed to give true informed consent until they are age 18, it is imperative that (when informed consent is required) the provider obtain parental or guardian consent prior to commencing a pediatric telerehabilitation visit. In cases where the parent or guardian may not be able to attend the visit (school-based services is one example), a form that provides consent for a certain time period can be completed and kept on file.
Finally, compared with their adult counterparts, pediatric patients often have shorter attention spans and demand more play and reward during therapy sessions. In addition to encouragement from the therapist or caregiver, pediatric telerehabilitation has the potential to maintain patient engagement through virtual gamification of range of motion, strengthening, balance, and coordination exercises.
As technology continues to improve, we will likely see a host of new virtual therapy programs that will encourage pediatric patient participation through the use of rewards from points scored, levels achieved, and opportunities for virtual socialization with others during exercise.
Recommendations for the Further Advancement of Pediatric Telerehabilitation
Despite its 25-year history, pediatric telerehabilitation is still in its infancy. Perhaps, in light of the recent acceleration in use due to COVID-19, it has reached toddlerhood, starting to more boldly explore its potential as it continues to gain strength. In either case, its further development is contingent upon many factors.
- 1.
Further research should be performed to demonstrate the relative efficacy of medical and therapeutic assessments and interventions delivered in this new virtual world. Safety, efficacy, access to and quality of care, effects on health care costs, and provider and patient/family satisfaction must all be evaluated.
- 2.
Payment for virtual services should be on par with in-person delivery and should cover visits wherever the child is located (hospital, home, school, etc.). Positive and negative effects of telerehabilitation services should be studied under both fee-for-service and value-based care structures.
- 3.
Interstate licensure opportunities should be offered throughout the United States to enable provision of telerehabilitation services across the country.
- 4.
Residency and graduate student training programs should include telerehabilitation training and education to prepare graduates for future virtual interdisciplinary collaborations.
- 5.
Product innovations, such as technology-enhanced clothing, haptic transmission, and virtual therapy programs, must become cheaper and more available to users from all geographic and financial groups. Programs like fitness communities for pediatric patients with disabilities, and international communities of caring, should be implemented to encourage multisite collaborative provision of care and support.
In the end, interested parties should invest their time and energy to continue to develop, promote, and support pediatric telerehabilitation programs that will move children with disabilities and their families closer to a world of health and information equity, optimization of function, and equal opportunity for a well-lived life.
