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The goal of a deep brain stimulation (DBS) program is to treat those patients who have appropriate indications for DBS and are in the referral base for the program. A successful DBS program: (1) identifies suitable patients on a regular basis; (2) undertakes an appropriate evaluation protocol; (3) educates patients and their care partners about DBS; (4) performs the DBS surgery; (5) cares for the patient before and after surgery by programming the stimulators and adjusting medications; and (6) does all of this in an economically feasible manner. Doing this requires a team approach that includes physicians, nurses, mental health professionals, other medical professionals, and the patient and their care partners. Assembling the necessary evaluation and treatment components for a successful program is the topic discussed in this chapter.
Specifically, this chapter considers how a neurologist specializing in movement disorders should assemble a team (Table 13.1) and organize a standard protocol for accomplishing the necessary procedures. Similar approaches should be followed to assemble teams focused on treating patients with epilepsy with DBS. See Chapter 11 for detailed information on the team-based approached recommended for evaluating and managing patients with psychiatric disorders.
Although it may seem easiest to organize a DBS team in the setting of an academic health center, successful programs can be established in private practice neurology centers with expertise in movement disorders. It is only necessary that all essential components are present and that the medical professionals act cooperatively, adhering to a specific and deliberate protocol.
Movement disorder neurologist
Initial screening evaluation of the referred patient
Coordination of other team members
Education of the patient and their care providers
Performance of off-medication and on-medication motor evaluations
Programming of DBS device
Education of referring neurologists, primary care physicians, and other clinicians
Neurosurgeon
Neurosurgical evaluation
Education of patient and their care providers
Performance of DBS surgery
Perioperative care of patient
Education of referring neurologists and primary care physicians
Psychologist
Psychological testing
Neurocognitive testing
Psychological treatment, as needed
Referring neurologist
Referral of patient
Communication of history of prior treatment and outcomes
Continued clinical care of patient
Primary care physicians
Medical clearance for surgery
Continued clinical care of patient
Psychiatrist
Psychiatric evaluation and treatment, as needed
Physical, occupational, and speech therapists
Evaluation and treatment, as needed
A program that has excellent neurosurgeons, movement disorder neurologists, nurses, and psychologists working as a team will not thrive unless there are relationships with referring neurologists and internists/family physicians. These relationships and referral patterns develop over time and are based on clinician education, good communication, and the demonstration that patients are handled successfully. Although DBS has been approved by the US Food and Drug Administration for essential tremor (ET) since 1997, for Parkinson’s disease (PD) since 2002, and for dystonia (under a Humanitarian Device Exemption) since 2003, many physicians are still not familiar with the selection criteria and outcomes for this treatment. Face-to-face educational opportunities with referring clinicians, including lectures and discussions, are helpful in cultivating these relationships. Communication with these clinical care providers at each stage of the evaluation and treatment phases of the DBS protocol is good medicine. The indications for DBS evolve over time,1 so it is important to update referring physicians on a regular basis.
The DBS evaluation protocol is more complex for PD than for ET and dystonia, so much of the discussion here is focused on PD. Additional specific comments regarding ET and dystonia are presented where appropriate.
The DBS team
A successful DBS team should operate like a well-oiled machine. Each member of the team should understand their role and communicate their findings in a reliable manner. A monthly multidisciplinary review of upcoming DBS candidates and current patients who may be potential candidates for treatment with DBS should be routinely conducted.
Detailed descriptions of the procedures for patient selection and care are provided in previous chapters. The general roles of the team members are discussed here.
Movement disorder neurologist
It is the movement disorder neurologist whose task it is to decide if the patient satisfies the clinical criteria that predict a favorable benefit/risk assessment and likelihood of a good outcome with DBS treatment. The movement disorder neurologist is best able to ensure that a patient indeed has idiopathic PD (or ET or dystonia), rather than another condition,2 and that the pharmacological management has been optimized before proceeding to DBS surgery. In addition, the movement disorder neurologist must establish that the patient has symptoms that are likely to be helped by DBS, and that they do not have significant contraindications to surgery. Additional responsibilities include coordinating the other team members, education of the patient and care partners, programming (or supervising the programming) of the DBS device, and medication management postoperatively.
Neurosurgeon
The neurosurgeon is responsible for determining that the patient is a DBS surgical candidate and is able to tolerate the surgery. In addition, the neurosurgeon educates the patient concerning the surgery and must ensure that the patient and family understand the potential risks of the DBS surgery in the context of the expected benefits of DBS treatment in order for the patient to provide informed consent. Finally, the neurosurgeon must care for the patient in the perioperative period and must communicate operative findings (see Chapter 3) during the surgery to the patient and their family, and to the neurologist responsible for programming the device. The neurosurgeon must also be available to replace the neurostimulator as it nears end of service and to replace device components that are not functioning optimally.
Nurse, nurse practitioner, or physician assistant
Nurses, often advanced practice nurses (such as clinical nurse specialists or nurse practitioners), are commonly members of the DBS team. In many DBS centers, they assist in the preoperative evaluation, perform pre- and post-DBS education for the patient and their care providers, assist in the operating room during DBS surgery, perform DBS device programming, and play a vital role in the long-term management of patients. Physician assistants may perform similar roles at some DBS centers.
Psychologist/neuropsychologist
A psychologist provides psychological monitoring and mental healthcare to patients. The neuropsychologist, an individual with specialized training in brain–behavior relationships, is responsible for the performance and interpretation of neurocognitive testing (see Chapter 2). The outcome of the psychological testing is communicated to the movement disorder neurologist and the rest of the team. If cognitive dysfunction is found that was not anticipated by the movement disorder neurologist during the initial evaluation, this is communicated to the neurologist and internist and attention is given to finding reversible causes by medication review, evaluation of sleep, etc. If significant psychiatric illness (especially depression or anxiety) is found, patients are referred to appropriate psychiatrists and psychologists. When appropriate, neurocognitive testing is repeated when the psychiatric illness is optimally treated.
Referring neurologist
Most often, a patient is referred from a neurologist who has cared for the patient for several years when that neurologist thinks the patient might be helped by DBS. The medical records from this neurologist are valuable information to help understand the effects of prior medication trials/changes, as patient recollection of details of therapy may be poor. It is important to communicate with this physician about the DBS evaluation, and this often involves a telephone conversation to clarify the patient’s response to medications. Often the patient will continue to see the referring neurologist, especially when the patient lives outside the local area of the DBS center. In addition to being good for patient care, the success of a program depends on referrals from other neurologists and therefore good working relationships are important.
Internist/family physician
The patient’s primary care physician is an integral member of the team. That physician may have the longest relationship with the patient and may be best able to advise on the patient’s comorbid medical conditions. The role of the internist/family physician is to help with medical clearance for the DBS surgery and ensure that any comorbid medical conditions are optimally treated. Often if a patient has other significant illnesses, additional specialists (such as cardiologists, endocrinologists, pulmonologists, psychiatrists) will also be involved in the evaluation process. In more rural areas where there may be a paucity of neurologists, internists may be the ones managing movement disorder patients and may thus make the referrals directly to the movement disorder neurologist or DBS center.
Psychiatrist
Although some centers have a psychiatrist who is a member of the team see each patient being considered for DBS,3 this is not routinely done.4,5 This practice may change if studies suggest there is additional benefit of a psychiatric evaluation above and beyond the neuropsychological testing routinely employed. Typically, an in-depth clinical interview is part of the neuropsychological evaluation, and detection of psychiatric concerns is therefore likely to occur as part of this evaluation. If a patient has significant psychiatric illness (for example, depression or anxiety), the patient is referred to both a psychologist for counseling/cognitive therapies and the psychiatrist for their evaluation and pharmacological treatment.
Physical, occupational, and speech therapists
These therapists play an integral role in the treatment of patients with PD,6–9 as well as in the treatment of patients with ET and dystonia. A few centers routinely have all patients seen by each of these therapists as part of the DBS evaluation rather than on an as-needed basis. In most cases, the movement disorder neurologist makes a decision for individual patients whether to refer for therapy evaluations as part of the DBS evaluation process. Often patients are seen in consideration of DBS because of symptoms for which DBS is not indicated or helpful (gait freezing/falls, speech impairment). If these are the main difficulties for the patient, they are counseled that these problems are not reasons to be treated with DBS and they are instead referred to physical or speech therapists.
DBS evaluation protocol
The details of the patient selection process are discussed in Chapter 2. For this chapter, 13 established DBS programs were queried as to their specific DBS screening protocols (personal communications). A typical evaluation protocol is presented here in order to illustrate the logistics of carrying out the procedures in an efficient manner. Several additional procedures are often done for academic interest and research purposes, but when not necessary for successful clinical outcome, those are not included here.
There is often a high degree of anxiety concerning the procedure from patients and their families, but many patients are also quite anxious to have the procedure done as soon as possible. It is not unusual for patients to ask if the surgery can be done in a few weeks.
This rush to perform the DBS surgery should be avoided and instead a methodical and consistent approach undertaken. The necessary timeline for evaluation should be explained to the patient at the first encounter. It should be clear to them that the decision to proceed with DBS surgery requires extensive medical, psychological, and neurological evaluation involving a team of medical professionals, as well as appropriate education of the patient and family about the procedure and realistic expectations about what DBS can and cannot do to treat the patient’s symptoms.
Patients who are to proceed with the full DBS evaluation protocol are given a schedule of the evaluations. These include: (1) neurosurgical evaluation; (2) neuropsychological evaluation; (3) medical evaluation; and (4) off- and on-medication evaluation (for PD patients). While these are largely separate evaluations, some may occur sequentially or concurrently. Most often, the patient has the neuropsychological evaluation and neurological evaluation in the off- and on-medication conditions before seeing the neurosurgeon. Especially for patients traveling long distances to the center, some effort may be made to efficiently coordinate the evaluations to reduce the number of trips the patient has to make. For example, in our center the off/on evaluation and neuropsychological evaluation are sometimes performed at a single visit. It is helpful to give patients written instructions on each of the procedures that must be done.
Initial screening evaluation by movement disorder neurologist
Clinical procedures
Patients being considered for DBS will ordinarily be referred to the movement disorder neurologist by another neurologist who had been managing the patient, or from the clinic/practice of the movement disorder neurologist, because of difficult-to-control parkinsonian motor fluctuations, tremor, or refractory dystonia. The movement disorder neurologist is to perform a comprehensive initial screening evaluation to determine whether the patient will likely benefit from DBS and therefore whether to proceed with the full DBS evaluation protocol (see Chapter 2).
The consultation report is sent to all of the medical team members, including the neurosurgeon, psychologist, primary care physician, and any other treating physicians/psychologists.
It is common for patients to assume that all aspects of their disease will improve after DBS. Patients must be educated on the expected benefits from DBS and on those symptoms not expected to respond to DBS so that they have appropriate expectations. Patients with dystonia must understand that benefits from DBS may take several months to materialize.
Education
It is helpful to have family or other interested parties present for this discussion and to give the patient literature on the subject, some of which is supplied by support group organizations as well as the manufacturer of the DBS devices.
Because the DBS evaluation protocol, DBS surgery, and postoperative care are complex and sometimes confusing to patients, it is helpful at the initial screening procedure to give a written description of the sequence of events and what to expect at each visit and then to schedule the patient to attend an informational session. We hold such informational sessions on a monthly basis (see below). The opportunity to talk with another patient who has already been treated with DBS gives valuable information from a patient perspective, and this can be arranged after this first screening visit.
Educational session for patients and care partners
We have found it helpful to have patients and care partners attend an informational session where the surgical procedure, pre- and postoperative care, and appropriate expectations are discussed in a relaxed, unhurried atmosphere.
Patients should be told in advance that there will be other patients attending, in case they would refrain from attending because of privacy issues. The patient is encouraged to bring whoever ordinarily helps in making important medical decisions with them. A short presentation should cover the indications for the procedure, the evaluation process, what to expect during the surgery, their care after the surgery, and what restrictions they will face after the surgery (such as avoidance of diathermy, strong magnetic fields, MRI except under special circumstances, etc.). Having a demonstration DBS system available, so that the patients can see and hold the hardware, is useful. Patients are given sufficient time to have their questions answered. We hold these sessions on a monthly basis for any patients being considered for DBS to treat PD, ET, and dystonia. The importance of patient education cannot be underestimated. Most established centers queried offer this informational meeting for their patients. Some centers require all patients being considered for DBS to attend at least one educational session.
Related posts:
Managing essential tremor patients treated with deep brain stimulation
Principles of neurostimulation
Managing dystonia patients treated with deep brain stimulation
Managing epilepsy patients treated with deep brain stimulation
New techniques for deep brain stimulation lead implantation
Managing Parkinson’s disease patients treated with deep brain stimulation
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