Understanding the High Fracture Risk in Adults With Cerebral Palsy Over Five Years

When cerebral palsy is diagnosed in childhood, the immediate focus understandably centers on early development, therapy, and helping children gain skills and independence. Bone health and fracture risk rarely enter early conversations, as broken bones don’t seem like pressing concerns when a child is young.

However, research has revealed something that transforms how we should think about long-term care for people with cerebral palsy: adults with CP face dramatically elevated fracture risks that begin surprisingly early in adulthood and accelerate with age in ways that parallel bone health patterns seen in elderly people without disabilities.

Recent large-scale studies tracking adults with cerebral palsy over five years have documented fracture rates that should fundamentally change clinical practice and family awareness. Understanding these risks, why they occur, and what can be done to prevent fractures becomes essential for anyone involved in long-term care of people with CP.

Why Fracture Risk Matters More Than You Might Think

Broken bones might seem like inconveniences that heal with time. For adults with cerebral palsy, fractures carry far more serious implications.

A fracture in someone with limited mobility can mean the difference between walking with assistance and losing the ability to walk entirely. When standing and weight-bearing are already challenging, the weeks or months required for fracture healing can result in permanent loss of function that never fully recovers.

Fractures directly correlate with increased morbidity and mortality in people with CP. Studies show that fractures signal accelerated declines in overall health and are associated with higher death rates. This isn’t because the fracture itself is deadly but because fractures indicate underlying fragility and often trigger cascades of complications.

The pain from fractures affects quality of life, participation in activities, and independence. For people who already face daily physical challenges, the additional burden of healing fractures and managing pain can be overwhelming.

Fractures create substantial caregiver burden. Caring for someone with a healing fracture, managing pain, attending medical appointments, and compensating for lost function requires significant time and energy from family caregivers who are often already stretched thin.

Economic costs of fractures include medical care, rehabilitation, adaptive equipment, potential lost employment for both the person with CP and family caregivers, and sometimes need for higher levels of care temporarily or permanently.

Understanding that fractures represent serious medical events rather than minor inconveniences helps frame why prevention deserves urgent attention.

Shocking Statistics About Fracture Rates in Young Adults With Cerebral Palsy

The most striking findings from recent research involve just how early fracture risks become elevated and how dramatically they exceed what’s seen in the general population.

Young adults with cerebral palsy ages 18 to 30 experience fracture rates equivalent to or exceeding those typically seen in people ages 65 to 74 without disabilities. Let that sink in: twenty-somethings with CP have the bone fragility of people in their late sixties and seventies.

Over a five-year period, all-cause fracture prevalence among privately insured U.S. adults with CP ages 18 to 64 was 6.3%, compared to 2.7% for age-matched adults without CP. This represents more than double the risk even after accounting for other health conditions.

Young adults with CP ages 18 to 30 face up to 6.5 times higher fracture prevalence compared to people the same age without CP. This is not a small increase but rather a massive elevation in risk occurring at ages when most people don’t worry about bone health at all.

The number and rate of subsequent fractures (meaning second, third, or more fractures after an initial break) among young men ages 18 to 40 and middle-aged women ages 41 to 64 with CP parallel patterns seen in elderly adults without CP. This suggests not just initial vulnerability but ongoing high risk of repeated fractures.

These aren’t theoretical risks or small studies. These findings come from large nationwide datasets tracking thousands of adults with CP over time, providing robust evidence that fracture risk begins dramatically early and remains persistently elevated throughout adulthood.

Why Adults With Cerebral Palsy Develop Fragile Bones

Understanding why bones become fragile in people with CP requires examining how bones develop strength and what factors compromise bone health in this population.

Bone is living tissue that constantly remodels itself in response to mechanical loading. When muscles pull on bones and weight-bearing activities create force through the skeleton, bones respond by maintaining or increasing their density and strength. This process is called Wolff’s Law: bone adapts to the loads placed upon it.

People with cerebral palsy often have reduced mechanical loading on their bones throughout life. Limited mobility, reduced weight-bearing, muscle weakness, and spasticity all decrease the forces that normally stimulate bone maintenance and growth.

This means that from childhood through adulthood, bones may never reach the peak bone mass that people without CP achieve. Starting adulthood with lower bone density creates vulnerability that persists throughout life.

Additionally, many people with CP have nutritional deficiencies that affect bone health. Vitamin D deficiency is particularly common due to limited sun exposure (spending more time indoors, inability to be outside easily, or living in care facilities). Calcium intake may be inadequate if eating is difficult or diets are restricted.

Medications commonly used to manage CP symptoms can affect bone health. Some anti-seizure medications interfere with vitamin D metabolism and calcium absorption. Prolonged use of certain medications contributes to bone loss over time.

Hormonal factors play roles, particularly in women. Early menopause or irregular menstrual cycles, more common in women with CP, lead to earlier decline in estrogen, which protects bone density. Lower estrogen means accelerated bone loss.

The bones themselves may be structurally different in people with CP. Studies using imaging and bone density measurements show that bones are often smaller in diameter and have thinner cortical shells (the dense outer layer of bone). Even when bone density measurements are relatively normal, structural differences make bones more fragile.

Understanding Different Types of Fractures That Occur

Not all fractures are the same, and the types of fractures occurring in adults with CP provide insight into underlying bone fragility.

Fragility fractures occur from low-energy trauma that wouldn’t normally cause breaks in healthy bones. These include fractures from falls from standing height or less, fractures occurring during routine care activities like transfers, or even spontaneous fractures occurring without clear trauma.

The presence of fragility fractures at young ages signals serious bone weakness. In the general population, fragility fractures are markers of osteoporosis and typically occur in people over 65. When young adults with CP experience fragility fractures, it indicates bone fragility equivalent to advanced osteoporosis decades earlier than expected.

Common fracture sites in adults with CP include the hip, femur (thighbone), vertebrae (spine), radius and ulna (forearm bones), and humerus (upper arm bone). Hip and femoral fractures are particularly concerning because they dramatically affect mobility and carry high complication rates.

Lower extremity fractures (leg bones) are especially problematic for people with CP because they directly impair the mobility and weight-bearing that may already be limited. A femur fracture in someone who walks with assistance might permanently end independent walking.

Vertebral compression fractures occur when vertebrae in the spine collapse due to weakness. These can happen spontaneously or from minor trauma and cause chronic back pain, height loss, and spinal deformity. Vertebral fractures are underdiagnosed because they can occur without obvious trauma and symptoms may be attributed to other causes.

Recurrent fractures (multiple fractures over time) indicate particularly severe bone fragility and represent a pattern deserving urgent intervention. Once one fragility fracture occurs, risk of subsequent fractures increases substantially, creating a concerning cycle.

How Low Bone Mineral Density Contributes to Fracture Risk

Bone mineral density (BMD) is a measurement of how much mineral content (primarily calcium and phosphate) exists within bone tissue. Higher density generally means stronger bones less likely to fracture.

BMD is typically measured using DXA scans (dual-energy X-ray absorptiometry), which compare an individual’s bone density to population norms. Results are reported as T-scores comparing to healthy young adults or Z-scores comparing to age-matched peers.

In the general population, low BMD (osteopenia) and very low BMD (osteoporosis) are diagnosed primarily in older adults. Osteoporosis is defined as BMD 2.5 standard deviations below the young adult mean, and this threshold predicts substantially increased fracture risk.

Studies of adults with cerebral palsy consistently show lower BMD than age-matched controls, with many meeting criteria for osteopenia or osteoporosis at relatively young ages. Some research indicates that low BMD is nearly universal in adults with CP who are non-ambulatory.

The relationship between BMD and fracture risk in CP is complex. While low BMD certainly increases risk, fractures can occur even when BMD measurements don’t reach osteoporotic thresholds, suggesting that other factors like bone structure, fall risk, and muscle function also contribute significantly.

This means that BMD measurement alone doesn’t fully capture fracture risk in people with CP. Someone might have BMD in the osteopenic range (moderately low but not technically osteoporotic) but still have high fracture risk due to frequent falls, poor muscle strength, and abnormal bone structure.

Nevertheless, BMD measurement provides valuable information about one component of fracture risk and helps guide treatment decisions about medications that increase bone density.

The Role of Falls in Creating Fractures

While weak bones make fractures more likely, falls provide the trauma that actually causes many breaks. Adults with CP face elevated fall risk due to multiple factors related to their condition.

Balance impairments from the neurological effects of CP make falls more likely. Difficulty with coordination, altered proprioception (sense of body position), and challenges with rapid balance corrections all increase fall risk.

Muscle weakness contributes to both fall risk and injury severity when falls occur. Weak muscles can’t catch the body as effectively during falls, leading to harder impacts. The inability to use arms to break falls means direct impact on hips, spine, or head.

Spasticity and abnormal muscle tone affect stability and increase fall likelihood. Sudden muscle spasms can cause loss of balance. Difficulty controlling movements makes navigating uneven surfaces or obstacles challenging.

Mobility equipment like walkers, crutches, or wheelchairs sometimes contribute to falls if they malfunction, are used incorrectly, or encounter environmental barriers like uneven surfaces or obstacles.

Environmental hazards pose particular risks for people with mobility limitations. Things that typical adults navigate easily (rugs, cords, clutter, stairs, uneven flooring) become significant fall risks for someone with impaired balance or mobility.

Medications affecting alertness, balance, or blood pressure may increase fall risk as side effects. Some seizure medications, pain medications, or muscle relaxants can impair coordination or cause dizziness.

Vision problems, more common in people with CP, affect the ability to see and avoid hazards.

The intersection of weak bones and high fall risk creates a particularly dangerous situation. Even if bones were strong, frequent falls would cause injuries. Even if falls were rare, weak bones might fracture from minor traumas. The combination multiplies risk substantially.

Why Standard Fracture Screening Guidelines Miss People With Cerebral Palsy

Current medical guidelines for osteoporosis screening and fracture prevention generally recommend beginning at age 65 for women and age 70 for men in the general population. Some guidelines recommend earlier screening only for people with specific risk factors.

These guidelines are based on when fracture risk increases substantially in typical populations. Before these ages, fractures are relatively uncommon and usually result from significant trauma rather than underlying bone fragility.

Applying these standard timelines to adults with CP represents massive underrecognition of risk. Waiting until age 65 to begin screening means missing decades of elevated fracture risk and multiple opportunities for intervention.

Research clearly indicates that screening and prevention in adults with CP should begin as early as their twenties or thirties, up to five decades earlier than standard guidelines suggest. This represents a paradigm shift in thinking about bone health in this population.

Most primary care physicians and even specialists managing CP care don’t routinely address bone health in young adults with CP because existing guidelines don’t prompt them to consider it. The gap between standard care and what research shows is needed creates a situation where known risks go unaddressed.

Insurance coverage for bone density testing and osteoporosis treatments in young adults can be challenging because these services are typically covered for older adults based on standard guidelines. Getting approval for BMD screening in a 25-year-old with CP may require extensive documentation and appeals despite clear medical justification.

The lack of CP-specific guidelines means that most care providers don’t know when or how to screen for bone health problems in this population. Recommendations developed for the general population don’t translate directly to people with CP who have different risk factors and baselines.

What Bone Health Screening Should Include for Adults With CP

Comprehensive bone health assessment for adults with CP should begin in the twenties or early thirties and continue regularly throughout adulthood.

Bone mineral density testing using DXA scans should be performed initially and repeated periodically (often annually or every other year depending on initial results and interventions). These scans measure BMD at the hip and spine, providing quantitative data about bone strength.

Vitamin D levels should be checked regularly. Vitamin D deficiency is extremely common in people with CP and contributes to bone weakness. Testing allows targeted supplementation when levels are low.

Calcium intake assessment through dietary recall helps determine if calcium supplementation is needed. Many people with CP don’t consume adequate calcium through diet alone.

Falls assessment should document fall frequency, circumstances, and injuries. Understanding fall patterns helps guide interventions to reduce fall risk.

Medication review should identify drugs that might affect bone health, allowing consideration of alternatives when possible or additional bone protection when necessary medications must continue.

Fracture history documentation creates baseline understanding of risk and helps track whether interventions are working. Any history of fragility fractures indicates high risk warranting aggressive intervention.

Physical function assessment including mobility, balance, and muscle strength provides context for fracture risk. People with worse function face higher risks and need more intensive prevention.

Nutritional assessment addresses overall diet quality, barriers to adequate nutrition, and specific deficiencies that might affect bone health.

This comprehensive approach goes beyond just measuring bone density to address all factors contributing to fracture risk in people with CP.

Nutritional Interventions That Support Bone Health

Nutrition plays fundamental roles in bone health, and many adults with CP have nutritional challenges requiring specific attention and intervention.

Calcium is the primary mineral component of bone, and adequate intake throughout life supports bone strength. Adults need 1,000 to 1,200 mg of calcium daily. Dairy products provide readily absorbed calcium, but many people with CP have difficulty consuming adequate dairy due to swallowing problems, lactose intolerance, or dietary restrictions.

Calcium supplementation becomes necessary when dietary intake is insufficient. Supplements come in various forms (calcium carbonate, calcium citrate) with different absorption characteristics. Taking calcium with food and spreading doses throughout the day optimizes absorption.

Vitamin D enables calcium absorption and has direct effects on bone cells. Vitamin D deficiency is endemic in people with CP due to limited sun exposure. Blood levels should be checked and deficiency corrected through supplementation.

Vitamin D supplementation doses for people with CP often need to be higher than standard recommendations due to baseline deficiency and ongoing limited sun exposure. Doses of 1,000 to 2,000 IU daily or more may be needed, guided by blood level monitoring.

Protein is essential for bone health and muscle maintenance. Adequate protein intake supports bone remodeling and preserves muscle mass that protects against falls. Many adults with CP don’t consume sufficient protein, particularly those with swallowing difficulties.

Overall nutritional adequacy matters because multiple micronutrients (magnesium, phosphorus, vitamin K, vitamin C, and others) contribute to bone health. A varied, nutrient-dense diet supports bones better than any single supplement.

For people with swallowing difficulties or who use feeding tubes, working with nutritionists to ensure complete nutrition including bone-supporting nutrients is crucial. Enteral nutrition formulas can be selected to provide optimal calcium, vitamin D, and protein.

Weight-bearing through adequate nutrition is itself protective. Being significantly underweight reduces mechanical loading on bones and decreases bone strength. Maintaining healthy weight supports bone health.

Exercise and Physical Activity to Strengthen Bones

Physical activity provides mechanical loading that stimulates bones to maintain or increase density and strength. For people with CP, appropriate exercise takes on crucial importance for bone health.

Weight-bearing activities where bones support body weight against gravity provide the strongest stimulus for bone strengthening. Walking, standing, and any activity involving supporting one’s own weight benefits bones.

For ambulatory adults with CP, regular walking provides important bone loading. Even if walking is slow or requires assistive devices, the act of weight-bearing stimulates bone maintenance. Walking programs should be encouraged within individual capabilities.

For people who use wheelchairs, standing programs using standing frames or standing wheelchairs provide weight-bearing even without walking ability. Regular standing for 30 to 60 minutes several times per week loads leg bones and can help maintain or slow loss of bone density.

Resistance exercises that involve pulling against resistance (weights, resistance bands, body weight) stimulate bones through muscle pull. Progressive resistance training can be adapted to various ability levels and provides bone benefits along with muscle strengthening.

Balance training reduces fall risk, indirectly preventing fractures. Activities challenging balance within safe parameters improve stability and may reduce fall frequency.

Hydrotherapy and aquatic exercise provide movement opportunities in supportive environments but offer less bone-loading benefit than land-based weight-bearing activities. Water’s buoyancy reduces mechanical loading that stimulates bones, so aquatic exercise, while valuable for other reasons, is less ideal specifically for bone health.

The intensity and type of exercise needed for bone benefits may exceed what people can do independently. Physical therapists can design adapted exercise programs specifically addressing bone health within individual capabilities and safety constraints.

Starting or modifying exercise programs in people with known bone fragility requires careful consideration. The benefits of loading bones must be balanced against fall and fracture risks during activities. Supervised programs in safe environments optimize this balance.

Medications That Can Protect Against Fractures

When nutritional interventions, exercise, and fall prevention aren’t sufficient to manage fracture risk, medications specifically targeting bone density may be appropriate.

Bisphosphonates are the most commonly prescribed osteoporosis medications in the general population. These drugs slow bone resorption (breakdown), shifting the balance toward net bone building. Alendronate, risedronate, and zoledronic acid are examples.

Bisphosphonates have strong evidence for fracture risk reduction in postmenopausal women and older men with osteoporosis. However, evidence specifically in adults with CP is limited, and considerations about use in younger adults require careful thought.

Side effects of bisphosphonates include gastrointestinal problems with oral forms, rare but serious jaw bone problems (osteonecrosis of the jaw), and very rare atypical femur fractures with very long-term use. For people with CP who have swallowing difficulties, oral bisphosphonates may not be feasible, making IV forms like zoledronic acid more appropriate.

Denosumab is an injectable medication given every six months that inhibits bone breakdown through a different mechanism than bisphosphonates. It may be appropriate for people who can’t take bisphosphonates or haven’t responded to them.

Teriparatide is an anabolic agent that actively builds bone rather than just slowing breakdown. It’s reserved for severe osteoporosis due to cost and requirement for daily injections. For people with CP who have very low bone density or history of multiple fractures, it might be considered.

Hormone therapy for women experiencing early menopause can protect bones by replacing lost estrogen. The risks and benefits of hormone therapy must be carefully weighed for individual situations.

The decision to use osteoporosis medications in young adults with CP involves balancing fracture risk against medication side effects and considering the lack of specific evidence in this population. Some physicians are hesitant to prescribe osteoporosis medications to people in their twenties or thirties despite high fracture risk.

Advocacy for appropriate medication when indicated may be necessary. If bone density is in the osteoporotic range or fracture history indicates high risk, standard age cutoffs for initiating treatment may not apply.

Fall Prevention Strategies Specific to Adults With Cerebral Palsy

Since many fractures result from falls, preventing falls directly reduces fracture risk.

Environmental modifications make living spaces safer. This includes removing tripping hazards like loose rugs and cords, improving lighting throughout the home, installing grab bars in bathrooms, ensuring handrails on stairs, and creating clear pathways free of clutter.

Appropriate assistive devices improve stability and should be properly fitted and maintained. Walkers, canes, and crutches should be the right height and in good repair. Wheelchairs should be regularly serviced to prevent mechanical failures that can cause falls or injuries.

Footwear matters significantly for fall prevention. Shoes should fit well, provide good traction, and be appropriate for the person’s gait pattern and mobility level. Avoiding slippery soles and ensuring shoes are fastened properly reduces fall risk.

Vision correction ensures people can see hazards. Regular eye exams and wearing prescribed glasses or contact lenses help people with CP navigate safely.

Medication management includes reviewing medications for fall risk side effects. If medications causing dizziness, sedation, or low blood pressure can be adjusted or alternatives considered, this reduces fall risk.

Physical therapy focused on balance training, gait training, and strengthening can improve stability and reduce fall likelihood. Regular therapy maintenance even in adulthood helps preserve function and safety.

Personal emergency response systems (devices that call for help if falls occur) don’t prevent falls but ensure rapid assistance if falls happen, potentially reducing injury severity and time lying injured.

Supervision or assistance during high-risk activities like bathing, transfers, or navigating stairs prevents falls during vulnerable moments.

For people who experience seizures, optimizing seizure control reduces fall risk from seizure-related loss of consciousness or coordination.

The goal is layered protection where multiple strategies work together to reduce overall fall risk.

What to Do After a Fracture Occurs

Despite prevention efforts, fractures may still occur. How fractures are managed can affect recovery and future risk.

Immediate appropriate medical care including accurate diagnosis, proper immobilization, and pain management is fundamental. Don’t hesitate to seek emergency care for suspected fractures.

Orthopedic care familiar with CP is ideal. Standard fracture care might need modification for people with spasticity, contractures, or unique bone anatomy. Finding orthopedic surgeons with experience treating people with disabilities improves outcomes.

Pain management requires special attention. People with CP may have different pain experiences or may communicate pain differently. Adequate pain control supports participation in necessary mobilization and rehabilitation.

Rehabilitation after fractures needs to begin as soon as medically appropriate. The goal is returning to pre-fracture function as quickly as safely possible to minimize permanent function loss. Extended immobilization can result in permanent loss of abilities.

Physical therapy during fracture healing maintains function in unaffected areas while protecting the healing bone. After healing, focused therapy works to regain lost function.

After one fracture, aggressive intervention to prevent subsequent fractures becomes urgent. A fragility fracture is a loud alarm signal about bone health requiring immediate action including bone density testing if not done previously, consideration of osteoporosis medications, optimization of calcium and vitamin D, and intensified fall prevention.

Evaluation of why the fracture occurred helps prevent recurrence. Was it a fall? What caused the fall? Can that be addressed? Was there no clear trauma, suggesting spontaneous fracture from severe bone weakness?

Psychological support helps people cope with the trauma of fracture, fear of future fractures, and any functional losses. Fractures can be emotionally devastating, particularly if independence is lost.

Coordinating Care Across Multiple Providers

Comprehensive bone health management for adults with CP requires coordination among various healthcare providers who may not routinely communicate with each other.

Primary care physicians often coordinate overall health but may not have specific expertise in CP or bone health in younger adults. They need to be educated about the elevated fracture risk in adults with CP and the need for early screening.

Orthopedic surgeons manage fractures when they occur and some specialize in osteoporosis and metabolic bone disease. Endocrinologists specialize in osteoporosis and metabolic conditions affecting bones. Either might appropriately manage osteoporosis in adults with CP.

Physiatrists (rehabilitation medicine doctors) often follow adults with CP for ongoing management of spasticity, function, and mobility. They are positioned to address bone health as part of comprehensive care.

Physical therapists implement exercise programs and fall prevention strategies and should be involved in bone health planning.

Nutritionists address dietary aspects of bone health and can be invaluable for people with CP who have feeding or swallowing difficulties.

The person with CP and their family members are the central coordinators of this care team. Ensuring that all providers know about bone health concerns and any interventions being implemented helps maintain coordinated care.

Maintaining a personal health record documenting bone density results, fracture history, medications, and test results ensures information is available to all providers.

Advocating for Appropriate Bone Health Care

Given that standard guidelines don’t address bone health in young adults with CP, advocacy for appropriate care may be necessary.

Educating healthcare providers about the research showing elevated fracture risk in young adults with CP can prompt needed screening and interventions. Bringing research articles or guidelines to appointments demonstrates seriousness and provides evidence.

If a provider is reluctant to order bone density testing for a young adult with CP, requesting clear documentation of why it’s being refused and what criteria would need to be met for testing to be ordered can sometimes change the conversation. Many providers will reconsider when asked to formally document refusal.

Seeking second opinions from providers with disability medicine expertise can provide access to specialists who understand unique health needs of people with CP.

Appealing insurance denials for bone density testing or osteoporosis medications in young adults requires documentation of medical necessity specific to CP. Letters from providers explaining elevated risk and need for early intervention support appeals.

Connecting with disability advocacy organizations provides resources and sometimes direct assistance with advocacy for appropriate care.

Documenting everything including requests for testing or treatment, responses from providers, and reasons given for any refusals creates a record useful for appeals, second opinions, or potential complaints.

The goal is ensuring that adults with CP receive the bone health screening and interventions that research clearly shows they need, regardless of age-based guidelines developed for people without disabilities.

Long-Term Outlook and the Importance of Lifelong Bone Health Management

Fracture risk in adults with CP isn’t a temporary concern but rather a lifelong issue requiring ongoing management.

Starting interventions early in adulthood when bone density may still be modifiable offers the best chance of preventing the severe bone loss and high fracture rates seen in older adults with CP.

Consistent long-term management including regular screening, maintained nutrition and supplementation, sustained exercise within capabilities, and appropriate medications when indicated can genuinely reduce fracture risk over decades.

Even small improvements in bone density or modest reductions in fall risk translate to meaningful decreases in fracture probability over time. The cumulative effect of consistent intervention is substantial.

Maintaining function through fracture prevention supports independence, quality of life, and longer healthspan. Each avoided fracture is a maintained ability to participate in life activities.

As people with CP live longer, thanks to improved healthcare, addressing bone health becomes increasingly important. The extended lifespan means more years during which fractures might occur, making prevention essential for healthy aging.

Research continues to improve understanding of bone health in CP and to identify optimal interventions. As evidence accumulates, guidelines will hopefully evolve to address the needs of this population more specifically.

The message is clear: bone health in adults with cerebral palsy requires attention beginning in young adulthood and continuing throughout life. The dramatically elevated five-year fracture risk documented by research demands that families, people with CP, and healthcare providers take this seriously as a priority health concern deserving proactive, aggressive intervention rather than waiting for fractures to occur before acting.