To better understand the challenges to the equitable management of spasticity care, it is helpful to consider the pathway to receiving care from both the patient’s and the health system’s perspective. Acute stroke remains a leading cause of severe spasticity; thus, we analyze a potential pathway to care for post-stroke spasticity to understand analogous challenges in other pathologies ( Fig. 1 ).

The Pathway and Barriers to Spasticity Care; this flowchart with swim lanes outlines the key stages in a patient’s journey from acute neurologic injury to long-term multidisciplinary management of spasticity. This graphic also seeks to highlight the patient, community, and health care system factors that can contribute to disparities along the pathway. These identified barriers are some of the ongoing targets of focus for patient education, health systems planning, policymaking, and future research.

One of the earliest barriers to connecting with post-stroke spasticity care begins with the onset of stroke. A person’s location and nearby available resources when seeking initial acute stroke care may lead to a delay in the identification of stroke, thus risking future long-term complications such as those related to the development of spasticity. For example, the use of Emergency Medical Services (EMS) may be a contributing factor to the promptness of early stroke care and early outcomes. About 60% of patients are transported to the hospital by EMS, according to data from the National Get With the Guidelines-Stroke registry. Patients with aphasia, altered level of consciousness, or weakness or paresis are more likely to present using EMS than patients without these symptoms. Patients with less common presenting symptoms, including vision changes, nausea, or vertigo, have more frequent delays in diagnosis and treatment. It is hypothesized that the suboptimal utilization rates of EMS are in part due to symptom recognition and financial disincentives to presenting with less classic symptoms. When considering inequities in seeking initial stroke care, Hispanic and Black patients show lower utilization rates of EMS for transportation to an acute care center during a stroke episode as compared to White patients. ^, There is also evidence of a financial disincentive for patients who present with less common symptoms of acute stroke, as delays in recognition and treatment, insurance-related barriers, and potential denial of emergency care coverage can increase the risk of high out-of-pocket costs for these individuals. Further, there is a worrying trend in the United States of insurance companies denying payment for emergency care if the final diagnosis is not deemed emergent, regardless of the red-flag symptoms that prompted the visit. This practice may further deter patients with more subtle or atypical symptoms from seeking emergency care due to fear of the expense.

Following symptom recognition and EMS activation, local and regional protocols frequently dictate the next steps. Hsia and colleagues found that even after adjusting for population size and capacity, hospitals serving the most disadvantaged communities had a 42% lower hazard of adopting any stroke certification when compared to mixed-advantage communities. Hospitals with higher-level designations, including comprehensive stroke centers and thrombectomy-capable stroke centers, are clustered around the most advantaged communities. Rural hospitals also have lower rates of mechanical thrombectomy and intravenous thrombolytic administration, with Black patients from rural areas having the lowest odds of receiving timely intervention when compared with White patients in urban areas. Similar evidence also shows that patients with inadequate insurance coverage experience similar delays in the early care pathway. These differences contribute to delayed hospital presentation times, longer times since last known normal, and delayed treatment initiation.

The rates of acute stroke intervention continue to trend upward, suggesting that overall access to care may be improving, but these differences in access and outcomes remain persistent. The underlying reasons for these disparities are complex and require institution-level engagement to help close the gaps in early care.

Goal-directed spasticity management ideally starts with early recognition and diagnosis, and often these assessments begin while a patient is still receiving care for their acute stroke. Early assessments for spasticity help to track the development, severity, and response to treatment over time. This early recognition may occur during the acute hospital stay, as spasticity can be detected as early as 1 week after stroke; however, care is more often initiated during the post-acute phase. Skilled physiotherapists play a critical role in this early recognition and intervention. Early physiotherapy is a central, first-line intervention in spasticity management. Early goals of preserving joint range of motion, maintaining muscle length, and improving function through task-specific training help to limit the disability that can result from spasticity. While pharmacologic or surgical treatment may later become necessary, data support physiotherapy as a crucial part of an ongoing, multimodal rehabilitation program.

When considering early access to critical rehabilitation care, analyzing disparities has proven to be a challenging task. In a recent scoping review analyzing the broad equity of rehabilitation care after stroke, Freburger and colleagues found significant variability among the findings and methodologies of the studies reviewed. The most consistent results in this analysis confirmed that individuals from lower socioeconomic backgrounds and those residing in rural areas had fewer opportunities for early rehabilitation care. However, the results were more mixed for the studies investigating race, ethnicity, age, and sex. Notably, among the studies that adjusted for patient function, results were more consistent that older persons and nonwhite persons were less likely to receive early rehabilitation care. These gaps in early rehab care have large implications for spasticity management. A large single-institutional study revealed post-stroke spasticity rates to be 68% on admission to acute rehabilitation and 50% at discharge, suggesting that multidisciplinary management at this level of care can improve outcomes.

For patients who were unable to engage with early rehabilitation care, or those who developed more notable spasticity after discharge to the community, there is an additional hurdle in the education needed by both patients and clinicians to recognize spasticity. Online resources are a common first stop for patients and caregivers seeking to recognize and understand spasticity. While high-quality educational resources for spasticity are available online, most are written at a level beyond the health literacy of most American citizens. Persons with limited proficiency in English face further challenges at this stage as well. This barrier of recognition and early referral may significantly limit patients who do not know of the care available. For patients who remain residents of long-term care facilities, spasticity remains underrecognized and undertreated, and a large portion of these residents are unaware of many of the available treatment options. In a study interviewing long-term care facility residents with spasticity, only 21% were aware of ITB, and 40% were aware of BoNT. When asked about the perceived barriers to treatment, a majority indicated that they had difficulties with traveling to a doctor’s office, and fewer than a third knew if their insurance would cover spasticity treatment. This study highlights an opportunity to educate this at-risk population on the available care options.

One of the most concerning barriers along the care pathway is the difficulty in connecting with outpatient spasticity services for continued post-stroke spasticity care. Focal injectable treatments are well known to manage post-stroke spasticity; however, a recent cross-sectional analysis of 2017 Medicare Provider Utilization and Payment Data revealed only 566 US providers with substantial adult spasticity chemodenervation practices treating Medicare fee-for-service beneficiaries. These providers were defined as having a practice with ≥11 unique Medicare patients treated with chemodenervation for spasticity, the minimum number required for inclusion in this public dataset. Provider specialties were evenly distributed among physical medicine and rehabilitation (280, 49.5%) and neurology (266, 47.0%). Similar to previous research, this study also showed that nonurban areas have less access to this form of specialty care. The US Southeast has the highest concentration of Medicare Fee-For-Service beneficiaries, suggesting that reduced nonurban access may disproportionately affect this region. In addition, access disparities among Hispanic beneficiaries were concentrated along the US-Mexico border in rural areas. These patterns reflect a troublesome geographic maldistribution of specialty care access.

Insurance and payor factors additionally affect the timeline of spasticity care. Insurance status significantly limits access to acute rehabilitation, with uninsured and publicly insured patients facing additional challenges compared to those with private insurance. In an analysis of a national-level stroke database, patients under Medicaid or Medicare were less likely to be discharged following a stroke to an acute rehabilitation unit than to a skilled nursing facility, when compared with those with private insurance (AOR 0.73, 0.70–0.77).

Health insurance limitations, particularly in the United States, significantly influence both the selection and timing of therapeutic interventions such as BoNT injections. The Centers for Medicare and Medicaid Services (CMS) requires that providers document an inadequate response or intolerance to less invasive treatments (oral antispasmodics, physiotherapy) before reimbursing treatment with BoNT. Additionally, prior authorization and benefits coordination are required before proceeding with treatment, increasing the administrative workload for providers and staff. Insurance requirements and procedures are a well-recognized source of delay and restricted access in spasticity management. While the cost of treatment is a significant challenge for both patients and providers, it has now been shown that there are reductions in overall health care costs after spasticity management.

Despite the growing literature supporting the need to enhance spasticity care, limitations remain in collecting data to support clinical practice guidelines and policy reform. Many studies on rehabilitation access and disparities use national-level data, which can be helpful to guide policy making; however, these data have limitations when applied on the local and regional levels. Differences in access to rehabilitation care are multifaceted and likely dynamic, changing in response to local and regional policy shifts, educational training, and variations in care availability. This more specific regional information has been more difficult to assess and may disproportionately affect underrepresented and marginalized communities. Collecting data at the local or regional level, as well as the inclusion of underrepresented groups in clinical trials, should be emphasized when discussing the advancement of rehabilitation medicine.

From the regulatory standpoint, the National Institute of Health (NIH) mandates that in all NIH-supported Phase III Clinical Trials, investigators must include a description of plans to recruit an adequate sample size and to detect significant differences in intervention effect by “sex/gender, racial/ethnic groups, and relevant subpopulations.” As of this writing and the most recent update to the Office of Management and Budget Statistical Policy Directive No. 15, one combined question for race and ethnicity is required, and respondents are encouraged to select as many options as apply to how they identify. These new requirements will likely continue to change our understanding of how racial and ethnic factors impact our delivery of care.

While patients with more generalized spasticity may achieve their goals with oral medication and physiotherapy alone, access to specialized interventions remains limited. The first-line treatment of patients with focal upper and lower limb spasticity is the use of BoNT, but there are few trained clinicians providing this intervention. Challenges in accessing spasticity care should also be considered across all age groups. BoNT is a well-established, effective, and generally safe treatment of reducing localized or segmental spasticity in children with cerebral palsy (CP), but access heavily depends on local expertize and multidisciplinary care availability. ^, Access to treatment across different ages is also largely influenced by regulatory considerations regarding approved indications, dose ranges, and payment coverage. Despite coverage benefits and product labels that outline treatment doses, wide variability remains in the application of botulinum toxin use and clinical practice patterns, showcasing the need for individualized and patient-centered approaches to management, even after access to care is achieved.

Chemoneurolysis with phenol or ethyl alcohol has received growing support as an effective option for focal intervention with minimal adverse effects; however, no standards exist regarding clinical guidelines or insurance regulations. ^, The training of clinicians for this intervention also varies widely, limiting options for large-scale clinical trials to further assess efficacy and long-term benefits. At the present time, no formal training is required for this intervention. Advantages of phenol neurolysis have historically been related to the quick onset and low cost, allowing for earlier treatment interventions in hospitalized patients. Further identification of how neurolysis impacts long-term outcomes is still to be determined.

For advanced systemic therapy, ITB therapy has become an important therapeutic option for managing severe spasticity, particularly in cases where oral medications are ineffective or produce intolerable side effects. However, access to this specialized treatment remains uneven across different regions and health care settings. There is published research indicating that access to ITB therapy is limited and that logistical barriers can result in undertreatment of spasticity. An analysis of hospital data in England revealed significant disparities in the availability and provision of ITB therapy, suggesting that geographic, institutional, and resource-related factors influence who receives this intervention. The study revealed a significant gap between the estimated need for ITB therapy and its actual provision, with only approximately 3.0 implants per million population performed, compared to an estimated need of 4.6 to 5.7 implants per million. The study identified multifactorial barriers to access, including organizational structures, resource and financial limitations, and variability in service delivery between regions. Such gaps may lead to inequities in patient outcomes, with some individuals unable to benefit from potentially life-changing spasticity management simply due to systemic limitations. We agree with the study authors that there is a need for further research and the potential development of national guidance to enhance access and service provision. Current training requirements for clinicians providing this therapy vary widely across different medical specialties, and the process for initiating therapy is not standardized between different health care systems.

Furthermore, research from the Netherlands has shown that the implementation of community-based and home-based ITB care models has shown promise in enhancing safety and feasibility, allowing patients to receive follow-up care closer to home. ^, Studies evaluating these programs indicate that with proper support and monitoring, ITB can be administered effectively outside of specialized centers, reducing the burden on patients and health care systems alike. Nonetheless, consistent access and standardized protocols are essential to ensure that all eligible patients can benefit from this treatment, highlighting the need for targeted efforts to address existing disparities and expand equitable access to ITB therapy in diverse settings.

The early identification and management of spasticity by a trained clinician remains highly variable across care settings, and access to surgical interventions is often influenced by socioeconomic factors. Referral patterns for surgical interventions are dependent on knowledge of these options in various regional settings and clinician familiarity with the implications of offering advanced treatments. Surgical interventions, including selective dorsal rhizotomy and tendon releases, are more frequently offered in larger urban, academic settings, resulting in disparities in access to these services for individuals in more remote, rural settings. A study of children with CP in Australia confirmed that the majority of patients receiving specialized surgical interventions (SDR and ITB) resided in urban settings, and the most socioeconomically disadvantaged regions were underrepresented in receiving these services.