Pediatric patient safety continues to challenge both pediatricians and pediatric physiatrists. While there is a trend toward developing general patient safety initiatives, there is little research on pediatric patient safety. This article identifies major areas of general safety risk, with a focus on timely diagnosis and care coordination to prevent secondary complications that compromise health, function, and quality of life in pediatric neuromuscular disease, spinal cord disorders, and amputation.
Pediatric patient safety continues to challenge both pediatricians and pediatric physiatrists. While there is a trend toward developing general patient safety initiatives, there is little research on pediatric patient safety. This article identifies major areas of general safety risk, with a focus on timely diagnosis and care coordination to prevent secondary complications that compromise health, function, and quality of life in pediatric neuromuscular disease, spinal cord disorders, and amputation.
Assessment of the pediatric patient in the rehabilitation setting, with an emphasis on safety
Assessment of the pediatric patient should contain information about the child in the variety of environments in which he or she lives and receives care. The most commonly encountered settings are home, school, therapy gym, and medical facilities.
Medical History
This section should describe the child’s principal diagnosis and include pertinent information about the events that led to the present condition in chronologic order (ie, trauma that led to spinal cord injury or brain injury; cancer that necessitated lower limb amputation). The historian should be a reliable source. Key points of the medical history, with an emphasis on safety, are briefly discussed here.
Birth and developmental history
Birth and developmental history include prenatal care, perinatal and neonatal events, prematurity, and age onset of major developmental milestones. It is important to distinguish between steady delay and skills regression for accuracy of diagnosis.
Medical and surgical history
It is important to determine the child’s general health status, and review hospitalizations, providers, allergies, and immunizations. A systemic approach to disease-specific complications is helpful. Seizures, visual and hearing impairments, and behavioral issues are more common in static and progressive diseases of the central nervous system. History of past or present respiratory complications should be explored in disabilities such as spina bifida, muscular dystrophy, cerebral palsy (CP), spinal cord injury (SCI), and spinal muscular atrophy. Frequent infections or failure to thrive may indicate chronic aspiration. Other examples of disease-specific complications and interventions include: recurrent aspiration, malnutrition, antispasticity, and orthopedic management in CP; central ventilatory dysfunction, syringobulbia, tethered cord, autonomic dysreflexia, pressure ulcers, urinary tract infections, and latex allergy in spinal cord disorders; nightmares, sweating, insomnia and fatigue consistent with hypercapnia, or exercise dyspnea from cardiomyopathy in advanced muscular dystrophy. Pressure ulcers may be related to weight changes, contractures, malnutrition, and incontinence, in addition to ill-fitting braces and poor positioning. Caregivers should have a high index of suspicion and be educated about signs of occult fracture in children with mobility issues.
Medication safety risks
Children with disabilities often require several different classes of medications including antiepileptics, antispasticity agents, antidepressants, and opiates. These medications may be prescribed by several different providers in several different environments (ie, acute rehabilitation units, long-term care facility, school, patient’s home), and also have significant side effects and drug-drug interactions. There is a high risk for medication-related errors in dosing and administration. A common risk factor is weight-based dosing and off-label use. Prescribers often deviate from standardized medication dosing. Medication side effects should be monitored and dosages adjusted as weight changes. The most common adverse drug reactions are associated with skin-related complications.
Neuromusculoskeletal Problems
Contractures and deformities of the extremities and spine secondary to weakness, spasticity, and pain can all contribute to loss of functions such as ambulation and self-care, and this in turn can lead to additional problems such as skin breakdown. Growth and decreased motor function may be associated with increased energy costs, contractures, and muscle stiffness. Spinal deformity secondary to scoliosis and the rate of increasing curvature must be well documented to help plan surgical intervention. Manual dexterity is also of significant importance because limited use of the hands can adversely affect the ability to propel a wheelchair, don/doff a prosthesis or orthosis, perform activities of daily living, and self-catheterize the bladder. Children with hemiplegia should also be assessed for functional deficits in the nonhemiplegic hand.
Current and Prior Level of Function
Current and prior level of function includes 5 major domains, including physical development (such as transfers and ambulation), and cognitive, communication, social, and adaptive/self-care skills. The amount of personal assistance and equipment needed for maximal independence should be documented. Screening tools commonly used to identify developmental delays include Denver II, CAT/CLAMS, or Developmental Assessment of Young Children (DAYC). A functional decline associated with new neurologic impairments may be a sign of myopathy, or cord tethering in spina bifida, or myelopathy in Down syndrome.
Poorly fitting orthotics, prostheses, and equipment
It is important for the clinician to inquire about orthotics, prostheses, and equipment. Questions regarding poor fit, pain with use, skin irritation, recent weight changes, and integrity and function of the devices are important in determining safety with application. Orthotic or prosthetic devices used by children with neurologic or sensory deficits can increase the risk of injury or skin breakdown. The child should be evaluated at home and school for assistive devices and adaptive equipment that can maximize safety and access to the environment (ie, wheelchairs/mobility/gait aids, standers, adaptive/feeding chairs, hospital bed, augmentative communication devices, grab bars, tub benches, bedside commodes, hand-held showers, raised toilet seats).
Impaired cognition
The cause of impaired memory, attention span, and judgment can be multifactorial in origin. Factors that can contribute include: underlying neurologic disorders; effects of medications such as antiepileptics, spasticity agents, and pain medications; infections and metabolic disorders; and attention-deficit disorder. Impaired cognition can delay acquisition of motor skills and affect performance in school and activities of daily living, as well as safety with outdoor play.
Impaired swallowing, feeding, and communication
Inability to swallow effectively can increase the risk of aspiration pneumonia and malnutrition. It is important to review dietary history as well as history of swallowing abnormalities and diagnostic testing results; one should monitor for aspiration signs, such as coughing with feeds or when asleep. Children may need positioning strategies for feeding. Caloric requirements in children need to be adjusted based on growth curves adjusted for height and weight, and activity patterns consistent with specific disability. It is important to monitor growth velocity as well as actual growth itself. It is especially important to elicit dietary history as active children transition to wheelchairs.
Impaired adaptive skills: dressing, toileting, and hygiene
The ability of the child to perform self-care should be recorded. The child may need undergarments to protect skin maceration secondary to soiling. The use of indwelling catheters should also be recorded because they can predispose a child to urinary tract infections.
Education and Socioeconomic Issues
It is important for rehabilitation clinicians to have a good understanding about the child’s level of family, financial, and community support, including educational services, environmental accommodations, service coordination, and adequacy of home health aide and nursing services. It is also important to evaluate the level of understanding of the child and caregiver about the child’s medical diagnosis and impairments. Language barriers should also be identified.
Physical Examination
It is important to perform a comprehensive physical examination of the child living with a physical disability, and attention should be given to neuromuscular and functional impairments that can exacerbate or create safety risks in the rehabilitation setting. The same diagnosis may require different examination techniques as the child with disability grows and develops. For example, in neonatal brachial plexus injury (BPI), the examination focus is on spontaneous movements, primitive reflexes, and tone, whereas in older children with persistent weakness attributable to BPI, the examination focus is on contractures, shoulder instability, and compensatory movements and function. Examiners must be familiar with age-appropriate milestones and developmental trajectories in various disabilities. A child-friendly environment is required for cooperation with examination. The most informative and accurate part of the examination often occurs while the child plays in the waiting room or proceeds into the examination room. Hands-on examination should occur last. The following are some key areas to be examined that are relevant to the patient’s safety.
Neurologic system
- 1.
Cognitive and behavioral evaluation: the level of the child’s alertness, awareness, attention, behavior, and cooperation should be recorded.
- 2.
Cranial nerve examination should focus on vision, hearing, smell, facial symmetry, and tongue movements. Bedside swallowing evaluation can be beneficial.
- 3.
Motor strength can be tested in key muscles of the upper and lower limbs in school-aged children. Spontaneous active movements should be observed at rest initially, and may be elicited in infants using primitive reflexes and position changes. Quality of movement, asymmetries, postures, weakness, incoordination, and reflex abnormalities may reflect motor deficits and should be recorded.
- 4.
Sensory evaluation may include assessment of light touch, pain/temperature, proprioception, and vibration if indicated and when possible. When accurate sensory examination in young children is limited, behavior changes and motor response to sensory stimulation should be recorded.
- 5.
Presence of tone, spasticity, posturing, persistent primitive reflexes, and absent protective reactions should be noted, as they can potentially lead to contractures and increased risk for falls. Monitoring for changes in tone and spasticity should be carried out, using a standardized instrument such as the modified Ashworth Scale or Tardieu scale, respectively.
- 6.
Evaluate balance in both sitting and standing positions if possible.
Musculoskeletal system: limb and spinal deformities
Bone configuration and joint mobility can change over time. Posture, alignment, passive and active ranges of motion should be recorded for the upper and lower extremities and spine. Contractures should be recorded for each of the involved joints. Limb length discrepancies and painful/tender areas should also be identified. If the child has a lower limb amputation, then the residual limb shape, length, circumferential measurements, integrity of suture line and painful/tender areas should be recorded as well as any hip or knee contractures. Redness and swelling of an extremity after exertion may be the sign of a fracture.
Skin
The skin should be thoroughly checked for any evidence of skin breakdown or irritation in the affected limb or trunk of a child wearing an arm, leg, or thoracic orthosis. The skin of the residual limb should also be checked in the child using a prosthesis, especially over pressure-sensitive areas such as the tibial tuberosity. Nonambulatory children who are bed-bound, or spend a significant amount of time in a wheelchair and have significant spasticity, should have their skin checked at the following bony prominences: sacrum, greater trochanters, ischial tuberosities, heels, medial knees, thoracic spine, and occiput (especially in infants and young children with disproportionately large heads).
General pediatric rehabilitation prescription considerations to maximize patient safety
Precautions
Universal precautions are generally practiced during therapy. However, there are certain precautions that pediatric physiatrists may need to consider when writing a prescription for rehabilitation. Some examples include: (1) seizure precautions; (2) fracture/fall risk (ie, amputee, osteopenia, balance, cognitive disorder); (3) cardiac and fatigue precautions (ie, neuromuscular disease); (4) surgery-related precautions (ie, weight bearing and range-of-motion restrictions); (5) risk for autonomic dysreflexia, orthostasis, pressure sores, temperature regulation, and sensory precautions in children with spinal cord injuries; (6) impaired communication and cognition (can pose a risk if modalities such as heat, cold, and electrical stimulation are being considered); (7) risk for atlantoaxial instability (ie, Down syndrome, juvenile idiopathic arthritis, skeletal dysplasia); (8) visual-spatial deficits (ie, spina bifida); (9) behavioral issues (ie, aggressive behavior); (10) pulmonary precautions (ie, aspiration risk, need for positioning and supplemental oxygen or monitoring for oxygenation levels); (11) thermoregulation precautions with exercise; (12) shunt precautions and need for protective headgear (used to maximize safety in the child with cranial defects, unsafe gait, or previous brain injury).
Exercise Regimen
An important principle in the planning of rehabilitation therapies includes the timing of therapy sessions to minimize patient fatigue secondary to other treatments or comorbidities (ie, chemotherapy, radiation, and dialysis). There are several different types of exercises including aerobic, resistance, and flexibility. Aerobic exercises are the mainstay of rehabilitation and the least controversial. Resistive exercises are controversial because of the risk of muscle injury during this type of exercise, and are discussed further in the section on muscular dystrophy. Resistance training machines are safer than free weights because they allow a fixed pattern of movement and are easier to learn. Equipment must also have proper sizing to avoid joint and muscle malalignment.
General pediatric rehabilitation prescription considerations to maximize patient safety
Precautions
Universal precautions are generally practiced during therapy. However, there are certain precautions that pediatric physiatrists may need to consider when writing a prescription for rehabilitation. Some examples include: (1) seizure precautions; (2) fracture/fall risk (ie, amputee, osteopenia, balance, cognitive disorder); (3) cardiac and fatigue precautions (ie, neuromuscular disease); (4) surgery-related precautions (ie, weight bearing and range-of-motion restrictions); (5) risk for autonomic dysreflexia, orthostasis, pressure sores, temperature regulation, and sensory precautions in children with spinal cord injuries; (6) impaired communication and cognition (can pose a risk if modalities such as heat, cold, and electrical stimulation are being considered); (7) risk for atlantoaxial instability (ie, Down syndrome, juvenile idiopathic arthritis, skeletal dysplasia); (8) visual-spatial deficits (ie, spina bifida); (9) behavioral issues (ie, aggressive behavior); (10) pulmonary precautions (ie, aspiration risk, need for positioning and supplemental oxygen or monitoring for oxygenation levels); (11) thermoregulation precautions with exercise; (12) shunt precautions and need for protective headgear (used to maximize safety in the child with cranial defects, unsafe gait, or previous brain injury).
Exercise Regimen
An important principle in the planning of rehabilitation therapies includes the timing of therapy sessions to minimize patient fatigue secondary to other treatments or comorbidities (ie, chemotherapy, radiation, and dialysis). There are several different types of exercises including aerobic, resistance, and flexibility. Aerobic exercises are the mainstay of rehabilitation and the least controversial. Resistive exercises are controversial because of the risk of muscle injury during this type of exercise, and are discussed further in the section on muscular dystrophy. Resistance training machines are safer than free weights because they allow a fixed pattern of movement and are easier to learn. Equipment must also have proper sizing to avoid joint and muscle malalignment.
Impact of care coordination and transitional planning on patient safety
Transitions in Care
Rehabilitation clinicians involved in the care of children with disabilities should also consider factors such as transition points in the care of the child as potential safety risks. Examples of transitions in care include: medical care on medical/surgical wards of hospitals; transfer from hospital to rehabilitation ward or facility; transfer from rehabilitation facility to home or long-term care facility; and transitioning from pediatric to adult care. Health care providers must identify necessary transition services, coordinate care, and ensure timely referral before transition, as well as enhance patient knowledge, autonomy, and involvement in clinical decision making.
Coordination of care among multiple different clinicians and settings can be challenging given the multitude of clinical and nonclinical providers, including family, physicians, teachers, therapists, nurses, coaches, paraprofessionals, service coordinators, and home attendants. Among the most common reasons for failure to receive continued medical care is lack of recommendation by acute care doctors or schools. Effective transmission of information remains challenging, especially when surgical interventions are planned and informed consent is needed. Communication among providers at various points in the continuum of health care is important to ensure that information exchange occurs and care is not compromised as the child moves back and forth along this continuum. Communication extends to all caregivers of the child, and should take into account that caregivers rely on multiple sources of information in deciding on a plan of care. Portable care notebooks facilitate effective communication. Collaboration between acute care and community social workers and case managers can result in better patient-centered care. Children with special health care needs provided with care coordination in medical homes benefit from increased access to specialty care, higher rates of school attendance, decreased hospital use, fewer unmet needs, and decreased financial burden on the family.
Patient safety in children with neuromuscular disorders
This section addresses patient safety issues common to children with neuromuscular disorders. While these conditions have varied physiologic causes, they all share characteristic patterns of functional disability and common safety risks. This section focuses on dystrophinopathies and spinal muscular atrophy (SMA).
Dystrophinopathies represent a heterogeneous group of neuromuscular disorders occurring within the sarcolemma. The muscle cells undergo repeated cycles of necrosis and regeneration, with fibrous tissue infiltration of the affected tissue. Eventually the muscle cells are no longer able to regenerate, resulting in a clinical and functional decline. Death usually results from respiratory failure. The most common dystrophinopathy is Duchenne muscular dystrophy, affecting 1 in 3500 males. In Duchenne, the abnormality occurs via an out-of-frame mutation at the Xp21 gene loci, producing a nonfunctional protein. In its milder form, Becker muscular dystrophy, the defect is in an in-frame mutation of the X chromosome that produces some functioning dystrophin, with varying degrees of clinical and functional decline. Full review of dystrophinopathies is beyond the scope of this article; however, the topic has been discussed elsewhere in the literature. Table 1 outlines common impairments and secondary complications associated with Duchenne muscular dystrophy.
| History, Signs, Symptoms | Safety Risk | Consultation/Diagnostic Tests/Intervention |
|---|---|---|
| Proximal muscle weakness, calf pseudohypertrophy, Gower sign, waddling gait | Falls due to progressive neuromuscular weakness | Physiatry: for multidisciplinary care coordination of neuromuscular rehabilitation services across the home, school, hospital, and community settings |
| Shortness of breath/chest pain/palpitations/arrhythmias, orthopnea, pedal edema | Dilated cardiomyopathy, conduction abnormalities | Cardiology: echo or cardiac MRI by age 10 years and repeated annually or biannually, ECG for conduction abnormalities, initial studies suggest ACE inhibitors and β-blockers show benefit in treating heart failure and cardiomyopathy |
| Shortness of breath, snoring, insomnia, daytime sleepiness | Atelectasis, restrictive lung disease, respiratory failure | Pulmonary: baseline PFTs prior to wheelchair confinement, then twice-yearly pulmonary evaluations after FVC <80%; PFTs dictate management of scoliosis more so than the magnitude of the curve Incentive spirometry to prevent atelectasis |
| Lateral curvature of the spine, asymmetric shoulders, pelvic obliquity | Scoliosis | Spine surgery: close monitoring with serial radiographs around adolescent growth spurt. Indication for surgery: before the primary curve >25°–40° and FVC >50% of predicted Radiology: communicate proper positioning technique to place children as upright as possible to prevent erroneous scoliosis curve measurements |
| Loss of muscle/joint range of motion, decreased strength and endurance, impaired mobility, impaired activities of daily living, poor trunk control, falls, history of steroid use | Progressive, painful contractures of iliotibial band, hip, and knee flexors; overuse weakness; osteopenia; fractures; falls; pressure ulcers | Physical and occupational therapy: for passive stretching exercises to prevent contractures; for sitting balance, trunk strength, and standing/weight-bearing exercises, gait training, wheelchair mobility, energy-conservation techniques, and parental home exercise program instruction. Therapy programs should be yearlong because contractures rapidly progress after wheelchair dependence develops Board of Education/Individualized Education Program (IEP): an IEP evaluation should be expedited to assure timely delivery of PT, OT, paraprofessional services, adaptive physical education, transportation, and neuropsychological evaluation Durable medical equipment clinic: supine or prone stander, standing frame (EZ Stander) bathroom chair, semielectric hospital bed, manual and motorized wheelchairs, Hoyer lift Orthotics: posterior leaf spring, AFO while ambulatory, solid AFO when nonambulatory; orthotic sneakers, balanced forearm orthosis, night splints. It is important to understand the types of orthotics applied with DMD progression. Orthopedic surgery: for contracture release surgeries and fracture evaluations |
| Fever, cough | Infections: primarily pneumonia and influenza | Primary care: for basic medical care follow-up. The American Thoracic Society recommends that patients with DMD receive the pneumococcal and annual influenza vaccination |
| Weight loss, dysphagia, constipation, abdominal pain, heartburn, obesity | Decreased gastric motility causing dysphagia and GERD | Nutrition and GI: for balanced diet rich in nutrition supplementation, particularly vitamin D and calcium |
| Hearing loss, visual/spatial difficulties, delayed developmental milestones | Sensorineural hearing loss, impaired retinal neurotransmission, speech and language delay | Audiology: for hearing test to evaluate for sensorineural hearing loss Ophthalmology: to evaluate for vision loss. Obtain vision test prior to motorized wheelchair prescription Neuropsychology: for cognitive rehabilitation focusing on compensatory strategies |
| Stress/anxiety due to cultural, psychosocial, and financial reasons for the patient and family | Psychosocial stress, insurance obstacles, cultural/language barriers | Social work and service coordination: for insurance obstacles, home therapy, and HHA services. Service coordinators provide home visits to alleviate caregiver stress and meet care coordination needs that hospital social workers are unable to provide Child Life: for recommendation to Make-a-Wish Foundation Translation services: to help bridge cultural and language barriers Muscular Dystrophy Association Clinic: grant information and care coordination Palliative care team |
Related posts:
Patient Safety and Quality Improvement in Rehabilitation Medicine
Medication Safety in Rehabilitation Medicine
Patient Safety Considerations in the Rehabilitation of the Individual with Cognitive Impairment
Patient Safety in Rehabilitation Medicine: Traumatic Brain Injury
Patient Safety in the Rehabilitation of the Adult with an Amputation
Safety Considerations During Cardiac and Pulmonary Rehabilitation Program
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