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 Table of Contents  
PERSPECTIVE
Year : 2021  |  Volume : 4  |  Issue : 1  |  Page : 8-14

A call to develop standardized guidelines for treatment of spasticity


Department of Physical Medicine & Rehabilitation, King Fahad Medical City, Riyadh, Saudi Arabia

Date of Submission26-May-2020
Date of Decision08-Jul-2020
Date of Acceptance09-Oct-2020
Date of Web Publication10-Feb-2021

Correspondence Address:
Dr. Ahmad Zaheer Qureshi
Department of Physical Medicine & Rehabilitation, King Fahad Medical City Riyadh
Saudi Arabia
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jisprm.jisprm_29_20

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  Abstract 


Due to the lack of understanding of spasticity across different medical disciplines, the approach and treatment strategies vary considerably among clinicians. This is further disjointed in health systems around the world due to differences in training, resources and infrastructure. Spasticity guidelines available in the literature mainly focus on clinical or specialized aspects of care. The vast majority of patients in the community across the world do not have access to specialized treatment of spasticity. To meet these requirements, this article calls for professional organizations to take the initiative at the international level to develop guidelines by involving stakeholders across different levels of health systems.

Keywords: Guidelines, model of care, spasticity


How to cite this article:
Qureshi AZ. A call to develop standardized guidelines for treatment of spasticity. J Int Soc Phys Rehabil Med 2021;4:8-14

How to cite this URL:
Qureshi AZ. A call to develop standardized guidelines for treatment of spasticity. J Int Soc Phys Rehabil Med [serial online] 2021 [cited 2021 Apr 14];4:8-14. Available from: https://www.jisprm.org/text.asp?2021/4/1/8/309053




  Introduction Top


The understanding, approach and treatment strategies in spasticity vary considerably around the globe.[1],[2],[3] The disparity is multifactorial. This may be due to the lack of consensual definition of spasticity,[4],[5],[6] insufficient structured training and lack of resources in different health systems. This can also be attributed to the difference in understanding of tone related disorders among health care providers (HCPs) and other stakeholders involved in the treatment of spasticity.[7] Spasticity involves experts with a different scope of practices, trainings and expertise; however, a unified approach across different disciplines is generally lacking. There are various treatment guidelines on spasticity[7],[8],[9],[10],[11],[12],[13],[14],[15],[16],[17],[18],[19] which are largely focusing on clinical aspects of care; however, there is no standardized guideline available in the literature which includes non-clinical aspects of care and can be adapted by HCPs of any background dealing with spasticity across different health systems. The emphasis on non-clinical aspects of care and stakeholders beyond HCPs is less emphasized in the literature. To address this global challenge, this article provides a framework to facilitate the development of guidelines for the treatment of spasticity which can be adapted and modified in various health systems based on the infrastructure, resources, privileging and scope of practice. An integrated clinical statement is proposed in the article, which can serve as the foundation for the framework.


  The Need for Developing Standardized Guidelines Top


There is a lack of structured curriculum and training on spasticity across various clinical disciplines; consequently, a highly varied approach in the treatment of spasticity is observed in different health systems. There is a lack of evidence to support this statement and one can argue that there is a lack of standardization in many disease treatments around the world, so how spasticity is any different? This rather, supports the idea that there is need of a framework to standardize the care of patients with disabling spasticity which can serve as a resource to develop institutionalized or local guidelines suitable to any health system; however, such an initiative needs to be taken at an international platform under the umbrella of academic or professional organizations. The need of standardized guidelines is explained below in the context of variations in spasticity management.

Lack of understanding of spasticity

Spasticity is sometimes considered synonymous with hypertonicity, which leads to one of the major misconceptions in spasticity management. It is imperative for HCPs to understand that there are many different reasons for hypertonicity, and spasticity is possibly one of them. The differential diagnosis of spasticity is well elaborated in the literature; however, it can be confused with other common forms of hypertonicity such as spastic dystonia, rigidity, or contractures.[4],[5],[6],[20] Similarly, for patients and families, different types of hypertonicity are categorized under the umbrella term “stiffness.” This may be due to the reason that spasticity is a scientific concept that is difficult for a non-clinician to comprehend or even clinicians to explain it to the patients or the families, especially when spasticity is coupled with other forms of hypertonicity. It is even more challenging when the focus of patients and their families is not spasticity, rather the unrealistic expectation to have a normal movement restoration in situations when it is not possible. This is of critical importance when considering interventional or surgical treatments. It is important to acknowledge that the major influencers in spasticity management are the administrative stakeholders, indirectly yet profoundly. The payer systems, health authorities, social services, and managerial stakeholders across a hierarchy may not recognize the importance of care pathways involved in spasticity management resulting in a significant barrier to developing large projects or procurement of resources. One may assume that it would be easier for physicians in administrative positions to understand the impact of neurological impairments given their background in medicine, but it could entirely be the opposite. Given the fact that disability care is one of the least recognized subjects in undergraduate and postgraduate education in medicine; it remains underemphasized in healthcare.[21],[22],[23],[24]

Variation in training and approach of health-care providers dealing with spasticity

Spasticity is a common entity in individuals with central nervous system injury. Spasticity affects nearly 38% of those with stroke, 90% with cerebral palsy, about half of individuals with traumatic brain injury, 40% with spinal cord injury and up to 90% with multiple sclerosis.[17],[25] The first point of contact for individuals with neurological illnesses is usually an internist, a family physician, a pediatrician or a neurologist. Interestingly, patients are likely going to follow with the same experts in the community. It is important to consider that neurology is still a rare specialty in many health systems around the world; hence the burden of care for most neurological diseases is on HCPs who may not have sufficient knowledge and expertise of treatment of spasticity and its disabling effects. Even though spasticity is a part of core training for specialists and therapists in the field of neurosciences, formal specialized training on the holistic treatment of spasticity is considerably lacking in many medical and clinical specialties. The vision beyond the treatment of tone or musculoskeletal impairments related to spasticity remains deficient. Given the fact that residency trainings are structured to include multiple core competencies in a time-limited training, trainees or students may not have sufficient exposure for skill development in one particular expertise such as spasticity. This renders the need for subspecialized or fellowship training programs across various disciplines that deal with spasticity. In North America, there are few non-accredited spasticity fellowship programs for neurologists or physiatrists; however, there is no accredited training programs in spasticity for physicians or clinicians.[26],[27],[28] This leaves HCPs to build up their expertise by virtue of experience, shadowing with experts and by attending continuous professional development activities including courses and workshops. Unfortunately, the focus remains limited to the clinical aspects of care. Even though the impact of spasticity in the disability population is considerable and spasticity has become a highly specialized entity, it remains underemphasized in training. In many health systems, neurology practice caters to movement disorders like dystonia and tremors, which are often not the scope of practice for physiatrists. Contrarily, physiatrists are more commonly involved in spasticity and contracture management, both of which may be differently approached by neurologists or surgeons. Spasticity management is an important and popular area of practice for rehabilitation clinicians; however, a considerable variation in approach may be present. It is an interesting area of research to objectively assess such variations.

What non-rehabilitation experts may miss during spasticity treatment?

Role of physicians who deal with impairments secondary to neurological disease remains crucial in spasticity management and disability in general; however, nonrehabilitation experts tend to lack formal training in disability management and rely on the rehabilitation resources available to them.[8] Vice versa, rehabilitation clinicians, tend to often rely on primary physicians or neurologists to address medical concerns related to spasticity such as the identification and treatment of trigger factors, investigating and treating pain, reviewing the need of pharmacological or injection treatments, input on orthotics devices or assistive technology and coordination of care with other specialties or stakeholders. This clearly requires expertise beyond identifying spasticity or prescribing conventional oral medications, which could otherwise have detrimental side effects, especially in patients with cognitive impairment or acquired brain injury. In many health systems, where such expertise is not available, there may be a tendency of therapists to initiate medical treatments outside their scope of practice which could compromise patient care. This renders the need of the primary treating physicians dealing with spasticity to meet certain standards of care or acquire expertise in the treatment of spasticity. Alternatively, to fill in this vacuum, the scope of practice for physical therapists and nurses has been extended in some health systems to include botulinum toxin injections, prescription of medications and intrathecal baclofen pump management.[29],[30] These are limited technical privileges which may not include other skills required in holistic treatment of spasticity.

Lack of concept of holistic care in medical education; a global dilemma

A major reason for physicians to lack the concept of holistic care while dealing with impairments like pain, spasticity or any chronic illness could be the medical education system itself, especially the undergraduate medical education. Even though modern medical curriculums outline the core competencies of “medical expert” quite clearly,[31] is it truly reflected in medical practice? A significant focus of training and education of HCPs is still organ-specific or system-specific education. Information is divided into sections, subsections and subspecialty sections, and unfortunately, mainly limited to clinical aspects of care. This leads the HCPs to be trained to look at things in segregation and limit their roles as clinicians, subconsciously. The other major reason for losing the holistic connection is the extraordinary emphasis on disease rather than “person” having the disease. Here, the word “person” is important inclusion to promote the idea of individual factors which are unique to every patient and can affect the outcome of the disease. Without addressing the non-clinical factors, a neurological disease outcome may be variable, especially if it is linked with a functional loss. That is why it is essential to consider impact of a disease on an individual and vice versa, and to go beyond clinical factors to include psychosocial, environmental, and vocational aspects of care in neurological disabilities. Nonclinical aspects of patient care need to be given equal emphasis so that the HCPs develop an insight into the impact of an ailment on quality of life. Physicians may associate their roles with “investigating,” “prescribing,” “ordering,” “diagnosing” and “treating the disease,” having less emphasis on the person who has the disease. The above insights are also reflected in approach of various HCPs while dealing with spasticity, which is not merely a disorder related to muscle tone, rather an impairment having considerable psychosocial impacts on the life of patients and their families. It is not an uncommon scenario when patients with stroke are least worried about the clot in the brain and are more concerned about hand recovery, inability to communicate, hemiplegic shoulder pain or behavioral changes. Neurologists or internists are often faced with such situations in a clinic setting. While the physicians may be focusing on secondary stroke prevention, the patient may be more concerned about return to work and fears losing the job because of poor hand function or aphasia. When coming across such situation, one must remove the cap of a clinician and explore the factors which can be addressed, identify the missing links and help to restore social empowerment of individuals with neurological disability, which is the ultimate goal of treatment of spasticity as well.

Lack of resources and infrastructure

Treatment of spasticity is multidisciplinary and requires a range of resources and a well-established infrastructure. Infrastructure is considered to be key to health care improvement.[32] Facilities involved in the care of individuals with disability need to consider the inclusion of expertise and technical resources specific for treatment of spasticity. This is important for the development of specialized spasticity programs. Few studies have evaluated the economic impact of spasticity and showed that spasticity produces both direct and indirect medical costs. It has been reported that there is a four-fold increase in the direct medical cost of stroke survivors with spasticity in the first year after stroke as compared with non-spastic patients.[33] Considering that spasticity is present in 38%–90% of individuals with various central nervous system injuries,[17],[25] the economic burden can be immense. Hence, it remains essentially important to involve the non-clinical stakeholders as many administrative stakeholders can potentially influence decisions at a larger level, play a pivotal role in directing health care systems and are the key players in developing health-related infrastructure. The dynamics of underdeveloped health systems may be beyond the expectations of HCPs from the developed health system. Ganapathy reported that there was not a single member, out of 3666 members of Neurological Society of India and Indian Academy of Neurology, who lived in a geographical area covering 934.8 million people.[34] Medical practice is challenging due to high turn-over, especially in urban areas. In a report on a tertiary care hospital in Pakistan, an average 2500–3000 patients visited outpatient daily and daily emergency visits made up 700–800 patients.[35] Immense workload, limited resources and financial constraints influence health-care practices in underdeveloped health systems. It is a challenge to ensure high-quality care, especially in areas requiring subspecialized care.


  Proposed Model of Care and Types of Guidelines Top


[Figure 1] proposes a model of care for the treatment of spasticity in a health-care system. A person-centered approach is projected here with specific guidelines for patients, family, caregivers and community. Separate guideline formulation is proposed here for institutional setting and HCPs in the community since their scope is variable. The importance of non-clinical guidelines for administrative stakeholders is highlighted in this framework, which needs to be customized to meet the needs of persons with disabling spasticity. One of the objectives is to highlight that, even though disability, in general, is governed by multiple stakeholders; there are many other stakeholders which can specifically influence spasticity treatment [Figure 1]. Though the model of care may cover some aspects of disability care in general, it is to be considered a focused model of spasticity care. [Figure 2] shows the classification of guidelines and [Table 1] describes provider-specific guidelines in the treatment of spasticity. It is proposed here that separate guidelines need to be developed based on the position or level of provider's or stakeholder's expertise in the health system. The division of first, second and third-line HCPs depends upon the extent of involvement across the health system in relevance to the patient; however, it may vary from on health system to another. [Table 2] shows various specialized programs and teams in the rehabilitation setting requiring specific guidelines.
Figure 1: Model of care for management of spasticity

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Figure 2: Classification of guidelines for treatment of spasticity

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Table 1: Provider--specific guidelines in treatment of spasticity

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Table 2: Examples of specialized programs and teams requiring specific guidelines for spasticity treatment

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Integrated clinical statement

A clinical statement is defined as “An expression of a discrete item of clinical, clinically-related or public health information that is recorded because of its relevance to the care of a patient or other entity.[36] There are various forms of scientific guidelines, including clinical practice guidelines, clinical management guidelines or position statements.[8],[9],[10],[11],[12],[13],[14],[15],[16],[17],[18],[19] These guidelines are based on levels of evidence to minimize biases, distortions and conflict of interest; however, the clinical statement below is intended to provide a generic overview of core concepts in spasticity, resourced from already available guidelines. The statement exemplifies a strategy of establishing a foundation for a model of care. The idea is to compile a single statement that summarizes some of the evidence-based core concepts in the treatment of spasticity in a simple, yet practical, manner. It is narrated in a way so that the clinicians treating spasticity can relate to it regardless of their background and expertise in any setting, anywhere in the world. The statement is based on various clinical guidelines already published in the literature; however, it should not be considered a substitute to clinical guidelines per say. The unique aspect of this clinical statement is the flexibility it offers and its universality for possible application in an underdeveloped as well as a well-developed health system. This statement is generated from evidence-based practices and compels the clinician to consider aspects of care beyond routine care and to avoid compulsions to limit the care to certain practices. It should be considered that the statement offers the flexibility of adherence by the inclusion of words like “where possible,” “as much as possible,” “try” and “acknowledge;” however, where optimal recommended action is to be indicated, words like “should” or “must” are used.

The statement is narrated as follows. Here the word “patient” refers to patients, family members and caregivers.

“HCPs should understand that spasticity may not always require active treatment. It only requires treatment if it is disabling to the patient or has the potential to be problematic in the future.[37] Spasticity should never be treated in isolation and other contributors of disordered sensory motor control need to be addressed as well.[38],[39] HCPs should be able to recognize different forms of hypertonicity and tone-related disorders which can exist with or without spasticity, and may require a different treatment.[6],[7],[13],[39],[40],[41] HCPs need to adopt objective assessment and outcome measures during treatment as much as possible.[5],[7],[11],[12],[13],[14],[15],[16],[19],[42] They should address patient's expectations of motor or functional recovery during spasticity management and need to individualize the treatment based on patient's preferences. HCPs should ensure that the patient understands the goals of spasticity treatment which can pertain to active and passive functions.[14],[15],[16],[17],[18],[19],[43],[44] Wherever possible during spasticity treatment, HCPs need to focus on improving the participation of the individual in community, which will likely require treatment of factors other than spasticity.[18],[37],[43] HCPs need to acknowledge that ageing and life-changing events may require the goals to be modified in various phases of life.[45] They should always screen the patient in detail for trigger factors and incorporate more than one technique in management including early mobilization, positioning, therapeutic exercises, orthoses, casting, functional retraining, physical modalities, assistive technology, environmental modifications, pharmacological options, and newer techniques where possible.[10],[11],[12],[13],[14],[15],[16],[17],[18],[19] HCPs may consider injection, interventional or surgical procedures when deemed appropriate. They acknowledge that the most important interventions in spasticity management are patient education and counseling, which need to be carried out continually.[19],[37],[46] A HCP cannot treat spasticity alone and need to try to involve other experts dealing with spasticity, possibly using an interdisciplinary approach. HCPs must acknowledge that spasticity treatment requires considerable resilience and patience, where factors beyond tone are to be considered. As much as possible, cognitive, communicative, psychological, and socioeconomic barriers need to be addressed to facilitate treatment compliance and ensure continuity of care, especially in the community.[43],[47] HCPs need to acknowledge that HCPs dealing with spasticity may come from different professional backgrounds and trainings, and opinions can vary. They should be able to handle difference of opinion professionally and tactfully. HCPs have to work within their limits of competence and scope of practice, and should not be reluctant to seek help from others. They need to adapt evidence-based practices and improve their understanding and skills in treatment of hypertonicity. HCPs have to think innovatively to find creative solutions for patients through collaborative teamwork. They should practice without conflict of interest and should share their skills and knowledge with others. Their primary focus in spasticity treatment should always be the individual and not the tone.”


  The Way Forward Top


The idea of this perspective is to bring the attention of the professional associations and international societies to consider comprehensive guidelines on spasticity beyond clinical aspects of care. The article emphasizes the important role of nonrehabilitation HCPs which constitute the global majority of HCPs dealing with spasticity. Spasticity treatment carries a considerable burden of care in disability management in general. The role of nonclinical stakeholders, including administrative, contractual, and community health stakeholders need to be emphasized in strategic planning at the institutional level and above. The standardization of global practice in spasticity management is a challenging task; however, there is a possibility of drafting a blue print document which can potentially serve as a standard template or guide for local societies, institutes or academic organizations to develop their own guidelines. This can be achieved by formulating special committee of international experts on spasticity from various backgrounds and countries to initiate a collaborative effort. There are >70 national societies affiliated with the International Society of Physical and Rehabilitation Medicine.[48] Representatives from regional societies, experts from other disciplines of rehabilitation and surgical experts need to be on board. To establish a well-rounded approach, community HCPs and administrative stakeholders can provide valuable input from their perspective. Development of a pre-guideline document in the form of blue print could be the next step in this direction.

Acknowledgment

My patients and mentors. I am very grateful to Dr. Tina Thornhill for editorial corrections of the manuscript.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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