Setting Realistic and Meaningful Goals for Treatment

CHAPTER 9 Setting Realistic and Meaningful Goals for Treatment

Elie Elovic and Allison Brashear

In 1998, O’Brien et al (1) discussed the importance of goal setting when planning spasticity interventions. Subsequently, the focus of goal setting has moved to the use of the Goal Attainment Scale (GAS) (2,3). Clearly, the setting of proper goals is an important component in the management of this condition. Clinical trials have focused on trying to replicate the clinic setting and set meaningful goals. To that end, the Disability Assessment Scale (DAS) (4) and the GAS (3) have been more recently used as additional end points to demonstrate clinical meaningfulness.

Numerous patients with a variety of neurologic conditions present for the management of his or her spasticity or other components of his or her upper motor neuron syndrome (UMNS) (5). The patient seeking treatment is looking for increased function, a decrease in his or her pain, improved posture, or easing of his or her caregiver’s burden. Most scales unfortunately do not reflect the individual nature of each patient’s specific issues. For example, patients do not present to a doctor’s office or a therapist’s clinic looking for improvement in their range of motion, a higher score on their Fugl-Meyer, a lowering of their Ashworth Scale, or a change in an electophysiologic measure, such as the H/M ratio. Yet, all too often, those are the outcome metrics that clinicians and scientists use when following up their patients or study participants during the course of treatment. However, patients do not seek treatment just to have changes in physiological parameters. Instead, they want changes that are meaningful to them. In fact, Taricco et al suggest that patient-oriented outcomes should not only be important for an individual seeking treatment but should also be the basis for evidence-based clinical practice (6). Other chapters in this text present an organized and extensive discussion of the numerous parameters that can be used to follow a person’s progress while they are undergoing treatment for their spasticity. The importance of choosing outcome measures that stress function and quality of life whenever possible as well as including the patient and family in the decision process cannot be overemphasized. This chapter helps guide clinicians in the process of choosing meaningful and realistic treatment goals.

CHOOSING MEANINGFUL AND REALISTIC TREATMENT GOALS

Patients and their families can be unrealistic and seek functional improvements that are just not likely to be obtainable. This can greatly complicate the efforts of clinicians who are often able to more accurately appraise what can reasonably be accomplished with treatment as compared to the patient or the family members. The challenge is to include the patient, family, and caregivers as members of the goal-setting team while maintaining professional objectivity and knowledge and guiding the treatment team into setting meaningful and obtainable goals. To accomplish this sometimes-challenging task, clinicians must communicate with the consumers of health care services while comprehensively evaluating the entire clinical scenario.

So what are the factors that clinicians need to consider when designing treatment goals and programs? These items can be placed into four separate categories: (a) the patient, (b) the support system, (c) financial resources, and (d) the skills of the treatment team and availability of different treatment modalities. Each of these items is discussed in greater detail in the sections that follow. It is critical that the clinicians perform an extensive assessment, including a history and physical evaluation that evaluates the items mentioned earlier, as the first step in the development of an appropriate treatment plan and goals.

The Patient and the Clinical Presentation

The patient’s clinical presentation, including the components of UMNS that he or she is experiencing and its etiology (6), is a critical component of the evaluation process. Other important factors include his or her prognosis, retained function, and the symptoms that the patient is experiencing. These items along with the other items discussed in the following are important in the decision process of goal setting for spasticity management.

Spasticity etiology. Clinical presentations may appear similar despite having very different etiologies. Spasticity that results from spinal cord injury and multiple sclerosis can respond well to oral antispasticity agents (7,8). As a result, it may be reasonable to set a goal to control a patient’s systemic spasticity and spasms by utilizing oral agents in these populations. This is not the same with spasticity, the etiology of which is from acquired brain injury. The cognitive side effects and sedation, as well as some of the agents’ potential for impairing recovery, and the limited efficacy of oral systemic antispasticity agents, make such a patient a relatively poor agent for systemic spasticity. The goal of reducing tone with an acceptable side effect profile with the acute brain injury population is very rarely met (9,10).

Time since onset. The treatment and goals that are pursued early after the onset of the condition often differ from those pursued later in the disease course. Although clearly there is some overlap, early treatment and goals place a greater emphasis on complication prevention and positioning while allowing and hopefully facilitating the recovery process. Chemodenervation is sometimes performed early on to facilitate recovery and improve range of motion and positioning, but certainly less often later in the tone management program. Early administration of a chemoneurolytic agent could lead to undesirable weakness or potentially block motor recovery because a person’s clinical presentation can rapidly change early in the recovery phase after a stroke. As a result, many of the interventional trials with botulinum toxins have as a criterion that the patient be at least 3 months out from the stroke before being eligible for study inclusion (11,12). Studies such as that of Brashear et al (4,13) used the DAS, which evaluated disability in the areas of hygiene, dressing, position, and pain to look for functional changes secondary to treatment. Elovic et al (14) looked at the effects of repeated open-label injections of botulinum toxin in areas such as quality of life and caregiver burden. These goals are important, but it is the long-term improvement in these areas that is most important clinically. Although there is some overlap in goal setting regarding the use of botulinum toxins, it is a very rare case where definitive procedures (ie, neuro-orthopedic, intrathecal baclofen placement) are performed early in the recovery, as the motor recovery process is nowhere near completion. Often, when clinicians utilize these procedures early on, it is an act of desperation because other more conservative modalities have failed to address the severe tone and significant contractures, or other complications are beginning to develop. As a result, when these procedures are introduced early on in the recovery phase, the goals often reflect complication prevention that is commonly seen early in the recovery phase.

Anatomic distribution. An important consideration when designing both treatment approaches and goals is the distribution of the muscle over activity. In broad terms, distribution is normally categorized into three different groups: focal, regional, or generalized. Focal distribution is the term used to describe when a person’s tone-related issues are confined to an area such as the hand or foot (ie, clenched fist or equinus deformity). A regional pattern is seen commonly with hemiplegia when an entire extremity or both on the same side demonstrate sequelae of the UMNS (5). Finally, the term “generalized” is used when the increased spasticity is noted through all extremities.

So how will anatomic distribution affect goal setting? When the increased tone is local in nature, then treatment and goals will reflect the area involved. For the hand, this might include decreased discomfort while wearing or greater ease in donning their splint, improved hand hygiene, greater cosmesis, or improved positioning. If there is residual function, then there could also be improved performance on hand and finger tasks, such as object manipulation or a more useful grip. When the foot is the issue, treatment goals could be improved mobility, ease of applying the brace, or an improved weight-bearing surface. When the pattern is more of a regional nature, the treatment and goals should also reflect that; however, there could be some overlap. Intrathecal baclofen is commonly used for regional or generalized spasticity. Goals for its use include improved mobility or easing of personal hygiene; however, it may also demonstrate an effect on a focal condition and improve the foot’s weight-bearing surface. When the muscle overactivity is generalized in nature, functional goals are less likely to be obtainable. Goals that are normally pursued in these cases are more passive in nature and often involve reducing discomfort and easing the caregiver burden; however, mobility can sometimes be addressed with systemic interventions such as intrathecal baclofen.

Functional and overall prognosis. The functional prognosis and life expectancy of the person with muscle overactivity need to be considered when making decisions regarding goal setting. If the spasticity that is present is a result of a condition such as a very aggressive lesion with a resultant short life expectancy, then it would be unreasonable to plan complex interventions such as neuro-orthopedic procedures that might theoretically lead to better weight-bearing surfaces and improved mobility. The recuperation time, morbidity, and discomfort that might come from these procedures are likely to outweigh any potential short-lived benefits that might result. Instead goals such as increased comfort, easing of caregiver burden, and the ability to facilitate limited independence of a person are more appropriate. However, if more functional goals can be pursued with less aggressive interventions, such as chemodenervation with toxin, they should be considered.

The issue of functional prognosis can also play an important part in the treatment and goal-setting process. The case of a patient who presents for spasticity management several years after a stroke can serve as a good example of this principle. It may be reasonable to treat with botulinum toxin one or two times to observe for long-term benefits after the toxin wears off. However, if after several interventions the patient returns to baseline, then the goal should be to effect long-term change in tone management and a more definitive procedure should be considered. Likewise, in the patient whose prognosis is very guarded, such as permanent vegetative state, the goals should be designed to find long-term, cost-effective solutions to facilitate care, positioning, and complication prevention.

Cognitive status. It is important to assess a patient’s cognitive ability when designing treatment plans and goals. Clinicians must address the person’s potential to be compliant and adhere to a prescribed treatment. An issue that must be evaluated is a person’s ability to adhere, safely follow, and watch for complications when using a splint or using an oral antispasticity agent. If there are substantial cognitive deficits and a lack of adequate support, much more limited goals must often be the treatment target.

Concurrent medical problems: The overall medical condition of the patient being treated must be considered. When designing a treatment plan and setting goals, the medical comorbidities of the person being treated must be taken into account. Although a neuro-orthopedic intervention or placement of an intrathecal baclofen system may be the optimal treatment to achieve the goal of functional mobility and ease of care, sometimes the medical condition may greatly complicate the situation because the general anesthesia that is needed to perform these procedures may not be tolerated because of cardiac risk. An example of this in which the author of this chapter was involved is discussed as clinical case 5 later in this chapter. Other medical issues that may affect treatment and goal setting include impaired cognition, decreased arousal, orthostatic hypotension, problems with skin integrity, or an infected decubitus ulcer that makes the risk of implanting a device far greater.

Residual function. When discussing problems with the UMNS, the symptoms can be divided into positive symptoms (ie, muscle overactivity, spasticity, clonus, cocontraction, associated reactions) and the negative symptoms (eg, weakness, fatigue, problems with coordination, and loss of motor control) (5). Most of our interventions address the positive symptoms of the syndrome, and our ability to address the problems that result from the negative symptoms is very limited. As an example, when toxin intervention is utilized, although there can be some unmasking of residual function and potential improved motor control, the vast majority of motor movement must already be present before the treatment. When there is none, goals of the treatment must be primarily passive in nature. For there to be active finger extension, the extensor mechanism must be relatively intact before implementation of any treatment intervention. This is less true in the lower extremity, as the use of an orthotic device in combination with toxin treatment may facilitate mobility, even when active ankle dorsiflexion is very limited.

Response to previous treatment efforts.

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