Spasticity Management in Long-Term Care Facilities

CHAPTER 30 Spasticity Management in Long-Term Care Facilities

Amanda Currie and David Charles

Spasticity is an element of the upper motor neuron syndrome defined by a velocity-dependent increase in stretch reflex with muscle overactivity (1). This syndrome is often a chronic, disabling, and painful condition that can result from any injury or illness to the brain or spinal cord. When present, spasticity can interfere with active function, such as walking and performing activities of daily living; and provision of passive care, such as transfers from bed to wheelchair, bathing, and dressing. From the patient’s perspective, spasticity can severely decrease quality of life (2) and lead to decreased mood, self-image, and motivation (3).

Because spasticity is a chronic condition, patients with spasticity require long-term care and monitoring. Many treatments for spasticity, including neurotoxin injections, intrathecal baclofen therapy, oral medications, and physical and occupational therapy require periodic evaluation by a physician and therapist in order to maximize therapeutic benefits and monitor for adverse effects. Even among patients who are not receiving treatment for their spasticity, monitoring is necessary to ensure that spasticity is not interfering with passive care or activities of daily living.

Although spasticity alone rarely necessitates placement in a long-term care facility, both adults and children with spasticity often have other chronic comorbidities requiring ongoing care and support for general health maintenance. These conditions, including cerebral palsy, multiple sclerosis, traumatic brain or spinal cord injury, stroke, and epilepsy, often require long-term evaluation and integrated health and rehabilitative services. In a population survey to determine the prevalence of spasticity at a long-term care facility for adults with intellectual and developmental disabilities, 68% of residents diagnosed with spasticity had co-occurring epilepsy, and 76% had co-occurring cerebral palsy (4). Considering the chronic nature of spasticity and the multiple comorbidities often associated with this disorder, it can be inferred that a considerable portion of patients in long-term care facilities suffer from spasticity (Box 30.1).

Unfortunately, the literature suggests that spasticity is often underdiagnosed and undertreated in long-term care facilities (4–7). In this chapter, we discuss the barriers to the diagnosis and treatment of spasticity in this population, and we present strategies to address these barriers. Because the majority of these authors’ experiences with the management of spasticity in long-term care facilities have involved adults with intellectual and developmental disabilities residing in a developmental center, the unique needs of this population are highlighted in this chapter.

PREVALENCE OF SPASTICITY IN LONG-TERM CARE FACILITIES

The prevalence of spasticity is likely increased in all long-term care settings, including acute care rehabilitation, skilled nursing facilities, and long-term residential facilities for both the elderly and individuals with developmental disabilities. In fact, epidemiological studies have confirmed a high prevalence of spasticity in long-term care facilities. In a population survey of all residents in a public developmental center for adults with intellectual and developmental disabilities, it was found that 35% of residents (72/205) suffered from spasticity (4). In a survey of medical directors at 11 public developmental centers, directors reported that approximately 33% (range, 17%–30%) of their residents had spasticity (5). Finally, a population survey of adults in a single nursing home revealed that 21% of residents (45/215) had spasticity (6). It can, therefore, be inferred that approximately one third of residents living in long-term care facilities suffer from spasticity (Table 30.1).

BOX 30.1

Key Points:

• The prevalence of spasticity in long-term care facilities is high.

• People with spasticity often have chronic comorbidities requiring ongoing care and support in a long-term care facility.

TABLE 30.1

PREVALENCE OF SPASTICITY IN LONG-TERM CARE FACILITIES
Study	Population	Prevalence of Spasticity
Pfister et al, 2003 (4)	Adults with IDD in one public developmental center	35% (72/205)
Gill et al, 2009 (5)	Adults with IDD in 11 public developmental centers	33% (range, 13%–70%)
Gill et al, 2008 (6)	Adults in a nursing home	21% (45/215)

IDD, intellectual and developmental disabilities.

Source: Adapted from Refs. (4–6).

UNDERDIAGNOSIS OF SPASTICITY

Despite the fact that residents of long-term care facilities are regularly monitored by medical professionals, spasticity is often underdiagnosed in this setting. Surveys of patients in long-term care facilities have revealed that significant numbers of residents are living with undiagnosed spasticity. The prospective population survey of residents at a single nursing home mentioned earlier involved a physical examination and a medical record review to determine the prevalence of spasticity at the facility. A comparison of the results from the physical examinations with the results of the chart reviews revealed that, of the 45 residents who were diagnosed with spasticity through a physical examination, only five had previously been diagnosed with spasticity (6). This discrepancy demonstrates that approximately 89% of the cases of spasticity at this facility were undiagnosed. Although additional data comparing diagnosis and prevalence rates of spasticity are lacking, it is likely that spasticity is similarly underdiagnosed at other long-term care facilities.

UNDERTREATMENT OF SPASTICITY

This underdiagnosis rate presents a problem inasmuch as it suggests that residents who are suffering from spasticity and could be good candidates for treatment are not receiving appropriate therapy for their spasticity. There is a host of Food and Drug Administration (FDA)-approved and commonly used treatments for spasticity described elsewhere in this book. However, even among residents of long-term care facilities who have documented cases of spasticity, these treatments are rarely prescribed to residents. Although occupational and physical therapy are sometimes prescribed, medical and surgical treatments and interventions, which can improve the effectiveness of physical and occupational therapy, are often not used.

In the prospective population survey of residents in a single nursing home mentioned previously, it was found that 39 of the 45 residents (87%) who were diagnosed with spasticity were not receiving treatment for their spasticity. This degree of undertreatment is not troublesome in and of itself because spasticity treatment should be goal directed, and spasticity does not interfere with daily care goals, and can even be helpful, in some cases. More troublesome, however, was the finding that, of the 45 residents who were diagnosed with spasticity, this disorder interfered with at least one activity of daily living in 32 residents (71%). Therefore, it was found that 71% of the nursing home residents who could have possibly benefitted from a spasticity management program were not receiving optimal treatment (6).

A similar trend was discovered in a population survey of adults with intellectual and developmental disabilities living in a public developmental center. In this prospective study, all 205 residents of the facility were examined for spasticity by a movement disorders specialist. Spasticity was identified in 72 of the residents. After a consultation with each patient’s multidisciplinary care team, including physical therapists, occupational therapists, nurses, primary care physicians, and developmental technicians, it was determined that spasticity was interfering with one or more activities of daily living in 54 of these residents. It can be concluded that 75% of the residents at this facility who could have possibly benefited from a comprehensive spasticity management program were not receiving optimal treatment (4).

BOX 30.2

Key Point:

• Spasticity is underdiagnosed and undertreated in long-term care facilities.

Undertreatment of spasticity was also demonstrated in a Chinese study of patients with upper limb spasticity residing in long-term care facilities. The purpose of this study was to investigate the effect of botulinum toxin injections on caregiver burden. The authors report that, at baseline, 18% of residents with spasticity were receiving limb stretching programs, 11% were receiving limb splinting therapy, and 36% were receiving oral drug therapy. The authors further implied that none of the residents were receiving other types of spasticity therapy including botulinum toxin injections or intrathecal baclofen therapy at baseline (7). Although the exact extent of undertreatment in this population cannot be ascertained from the data provided, it can be inferred that a significant proportion of residents at this facility could have benefited from a comprehensive spasticity management program.

This evidence clearly demonstrates that many patients with spasticity in long-term care facilities are not receiving treatment for this condition that is interfering with their activities of daily living. Although a variety of FDA-approved treatments for spasticity are available, they are not being used at a high rate in long-term care facilities. This discrepancy can be partially explained by the underdiagnosis of spasticity; if spasticity is not diagnosed, it cannot be treated. A host of additional barriers prevent those patients who have been diagnosed with spasticity from having access to the treatments they deserve (Box 30.2).

BARRIERS TO DIAGNOSIS AND TREATMENT

A multitude of barriers hamper patients’ access to care for spasticity. The reasons contributing to the underdiagnosis and undertreatment of spasticity are likely multifactorial and include lack of physician knowledge about spasticity, patients’ communication difficulties, lack of perceived importance of treating spasticity compared to other comorbidities, limited treatment availability, and informed consent issues.

Many physicians, including specialists, lack the knowledge and behaviors to accurately diagnose spasticity. There is no biomarker or standardized clinical algorithm used in the diagnosis of spasticity. Specialists currently diagnose spasticity based on a clinical impression formed after considering the medical history and performing a neurologic and musculoskeletal examination. Factors contributing to the underdiagnosis of spasticity can, therefore, include a physician’s lack of knowledge about spasticity and insufficient training on how to perform the neurologic and musculoskeletal examination for spasticity.

Communication difficulties between patients with spasticity and their health care providers can serve as an additional barrier to the diagnosis and treatment of this condition. Some patients with spasticity, especially those with intellectual and developmental disabilities or other cognitive difficulties, are unable to identify or describe their symptoms to health care professionals. In addition, these patients are often unable to request particular treatments or advocate for their own medical care (7). Communication difficulties can, therefore, present a barrier to the diagnosis and treatment of spasticity.

The presence of spasticity is likely overshadowed by the severity of residents’ comorbidities in many cases, presenting an additional barrier to diagnosis and treatment. Although spasticity can be debilitating and can interfere with activities of daily living, it is rarely the primary reason patients are in long-term care facilities. Rather, patients are placed in long-term care facilities because they require a high level of care for another primary, potentially life-threatening comorbidity. Residents’ treatment plans are often focused on this primary condition, including stroke, traumatic brain or spinal cord injury, epilepsy, multiple sclerosis, and cerebral palsy, while the secondary developmental conditions such as spasticity are overlooked (4,8). A barrier contributing to the underdiagnosis and undertreatment of spasticity is likely a perceived lack of importance of treating spasticity when compared to the severity of other comorbidities.

Another barrier to the treatment of spasticity in residents of long-term care facilities is the lack of availability of treatments in these centers. A recent survey of medical directors at 11 public developmental centers in the United States highlighted this issue of access to spasticity treatments. Each medical director was asked to estimate the prevalence of spasticity at his or her facility, rate the importance of treating spasticity, and report the availability of spasticity treatments at the facility. All medical directors reported having patients with spasticity at their facilities, and they all expressed that treating spasticity was “important” or “very important.” However, neurotoxin injection was available at only 55% (6/11) of the centers, and patients at only 18% (2/11) of the facilities had access to intrathecal baclofen therapy (5). This study therefore demonstrates that, even when spasticity has been identified and its treatment is felt to be important, the lack of access to available FDA-approved therapies for spasticity is a significant barrier to treatment.

Another pervasive and troubling barrier to spasticity treatment is related to obtaining informed consent for spasticity interventions, especially among patients who are not able to provide informed consent for themselves. A recent study investigated the factors influencing the likelihood that a conservator would provide informed consent for spasticity treatment for a resident with intellectual and developmental disabilities in a long-term care facility. In this study, residents were examined for the presence of spasticity, and treatment recommendations were developed by a movement disorders specialist based on input from the patient’s care team. The conservators for all patients who received treatment recommendations were contacted to obtain informed consent for the recommended treatment, and conservators’ demographic characteristics were compared to their willingness to provide informed consent. The findings of this study revealed that court-appointed medical decision makers were significantly more likely to provide informed consent for recommended therapies, even if these therapies are invasive, compared to medical decision makers who were related to the patient. Furthermore, among conservators who were related to the patient, parents of residents were found to be significantly less willing to provide consent compared to nonparents. Finally, African American conservators were significantly less likely to provide informed consent for the recommended therapies compared to Caucasian conservators, regardless of the race of the patient (9,10). These findings, therefore, suggest that the medical decision-maker’s race and relation to the patient can pose significant barriers to spasticity treatment for residents of long-term care facilities (Box 30.3).

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