FOUR

Choosing the Health Care Team that Is Right for You

When considering DBS, one of the most important decisions you will make is your choice of a DBS health care team. Your decision will impact not only you but also your family and other care partners. Undergoing DBS surgery leads to a long-term relationship with those who will manage your DBS system. There will be several visits prior to your surgery. After surgery, you will be followed for as long as you have your DBS. Having the right health care team before and after surgery, as well as for your long-term follow-up, will help to ensure you have the best possible experience. To have a good outcome from your DBS surgery, you need to choose a team that you trust will provide you with excellent care.

Since the approval of DBS for Parkinson’s disease, tremor, and dystonia by the FDA, there has been an increase in the number of surgeons performing DBS surgery. It is estimated that there are approximately 250 DBS centers in the USA. You may be referred to one of these centers by your neurologist or primary care physician, or you may get a recommendation through a support group, friend, or a health care worker that you know personally. Your favorite Internet search engine may also be useful in finding information about DBS centers in your area. However, how do you know which centers are qualified to perform DBS surgery? What makes a qualified DBS center? Unfortunately, there is no “certification” process for becoming a DBS center or for surgeons who want to provide this service. Similarly, there is no standardized process for selecting the best candidates for DBS. It will largely be up to you to determine if the DBS center that has been recommended is right for you. In this chapter, we will describe how to find your ideal DBS team.

THE DBS TEAM: CONSIDERATIONS

When choosing a DBS team, you will need to consider where you live and the distance you must travel to the DBS center. There are likely to be several appointments prior to surgery. After surgery, there will be regular follow-up visits. These numerous visits before and after surgery make distance from home an important consideration. Make sure you are prepared to travel back and forth to the DBS center as much as needed. We recommend that you choose a center that is as close to your home as possible.

If you have your DBS surgery a long distance from your home, do not assume that you will be able to find someone closer to home that will take over the management of your DBS after it is implanted. While it may certainly be possible to be followed closer to home, do not wait until after your surgery to find a local DBS physician. It is best to make those arrangements before surgery. Whenever possible, we believe it is best to have your long-term follow-up done by the members of the team that did your preoperative evaluation and DBS surgery. They have insight into your condition and DBS surgery that an outside physician may not be able to appreciate.

It also should not be assumed that the closest center to your home is the best choice for you. While distance is an important factor, there are a number of other considerations to think about when choosing a DBS center. Among the most important factors in choosing a DBS center are the experience and the skill of the health care providers. We strongly believe that the best outcomes are achieved by experienced, well-trained, multidisciplinary DBS teams.

MEMBERS OF THE DBS TEAM

The DBS team is a group of health care providers who work together to help determine if DBS is the right choice for you. They evaluate your condition to determine whether you will benefit from DBS. They also consider any adverse effects that DBS may have on your condition. After surgery, the team provides ongoing management of your DBS.

The DBS team is led by a DBS neurologist and a DBS neurosurgeon. Others on the team may include neuropsychologists or psychiatrists, speech and language pathologists, nurses, nurse practitioners, physician assistants (PAs), neurophysiologists, social workers, and physical therapists. Together, they have the knowledge and experience to care for people with DBS. The following information describes the role and qualifications of the key health care providers that may be on your DBS team. When choosing your DBS team, be sure to ask about their training and experience.

The Neurosurgeon

The neurosurgeon is responsible for placing your DBS system and managing any surgical complications. Careful consideration should be given to the reputation of the neurosurgeon on your DBS team. A neurosurgeon is a physician who has completed 4 years of college, 4 years of medical school, a surgical internship, and 5–6 years of neurosurgery residency. Ask if the neurosurgeon is board-certified by the American Board of Neurological Surgery. Board certification means that the surgeon has met the board requirements for education, peer review, and examination in the practice of neurological surgery.

DBS surgery is a stereotactic procedure that uses images to guide placement of the lead. A qualified DBS neurosurgeon should have undergone specialized training beyond the neurosurgery residency in a fellowship related to stereotactic or functional neurosurgery. This means that the neurosurgeon is specially trained in neurosurgical procedures using computer images to reach precise targets in the brain.

A key element of DBS success is experience. The DBS neurosurgeon should average at least one DBS surgery per month to remain proficient. If the neurosurgeon does not perform very many DBS surgeries, he or she will not have enough experience to maintain his or her skills. This may lead to longer operative times and complications. When meeting the surgeon, ask about the frequency of the DBS surgeries that he or she performs and the number of cases he or she has performed in his or her career. Also, inquire about the rate of complications experienced by the neurosurgeon. Find out how his or her complication rate compares with other DBS centers. No more than 2%–3% of the neurosurgeon’s cases should result in serious or permanent complications.

When considering the neurosurgeon, ask about the availability of another qualified neurosurgeon to cover when the DBS neurosurgeon is not available. Inquire about who covers for the DBS neurosurgeon in the off-hours, in the weekends, or when he or she is out of town. Is the covering physician experienced? Is coverage left to a general neurosurgeon, neurosurgery resident, or physician’s assistant? The ability to manage complications from DBS surgery is as important as the ability to perform the surgery. If your DBS surgeon is not available, there should be another neurosurgeon available who is equally well trained and experienced.

The neurosurgeon’s hospital or medical center affiliation is another important consideration. At minimum, the facility should be accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). JCAHO focuses on patient safety and the quality of care. Hospitals and health care facilities that meet the standards for JCAHO accreditation provide care using good health care practice and policy. Many third-party insurance payers make JCAHO accreditation a requirement for payment. If the facility is not accredited, your insurance may not cover the DBS procedure at that facility. General information about the accreditation status can be located on the hospital or medical center website. Your insurance carrier will also have information about whether they have a contract with the chosen facility.

Consider the reputation of the health care facility where your DBS surgeon is employed. Does it have a good reputation in the community? Your primary care physician, your insurance company, or someone you know in the health care industry may provide important insight about the care provided at the hospital affiliated with the DBS neurosurgeon. You will want a facility with a surgical suite that houses state-of-the-art technology and image guidance equipment. Is there an MRI suite on site? Information about the available equipment may be described in the hospital or DBS team written literature or Internet website. The neurosurgeon can provide information about the methods and equipment he or she uses for his or her DBS cases. Surgical methods and equipment will be discussed later in this book.

If microelectrode recording is used during surgery, it is essential to have an experienced neurophysiologist to accurately interpret the recordings. (See Chapter 7 for more information on the use of microelectrode recording during surgery.) In some DBS centers, the neurophysiologist may also be the DBS neurosurgeon or neurologist. In others, it may be a different member of the team. The neurophysiologist records and interprets electrical activity of the brain. The recordings help precisely locate the target in the brain for placement of the DBS electrode. Some centers do not use microelectrode recordings because they feel confident about their ability to correctly place the DBS lead in the target without them. Some centers may also perform intraoperative MRI rather than microelectrode recordings to confirm placement. Since most centers still use microelectrode recording during surgery, if the center you are considering does not use this, you should ask why.

The Neurologist

While the neurosurgeon manages the surgical placement of DBS, the neurologist provides ongoing follow-up after DBS placement. The DBS neurologist is a physician who has completed medical school, a 4-year neurology residency, as well as a fellowship in movement disorders. This means that the neurologist has spent an extra year or two beyond the standard neurology residency to learn how to take care of people living with movement disorders such as Parkinson’s disease, tremor, and dystonia. The DBS neurologist has also spent additional time taking care of and programming individuals with DBS. As with your DBS neurosurgeon, ask if the neurologist is board certified. The governing board for neurologists is the American Board of Psychiatry and Neurology. Board certification means that the neurologist has met the board requirements for education, peer review, and examination in the practice of neurology. There is no additional formal certification at the present time for care of movement disorders or the care of the individuals with DBS.

The roles of the DBS neurologist are to help select the best candidates for DBS and to provide follow-up care for people living with Parkinson’s disease, tremor, or dystonia who have undergone DBS placement. The DBS neurologist should know how to perform DBS programming. Many DBS centers have nurses, nurse practitioners, PAs, or others who know how to program the DBS system. Although it is quite helpful and efficient to have others trained in DBS programming, it is important for the DBS neurologist to also be an experienced DBS programmer. The reason for this is that the best outcomes from DBS involve changes not only in stimulation but also in medications. The few months after DBS surgery as stimulation is being applied and medications are being decreased can be challenging. Thus, evaluation and management of DBS outcomes are best accomplished by neurologists with DBS programming skills who have knowledge of the entire picture. Be wary if the neurologist relies solely on others to perform DBS programming. Also, be cautious if the DBS neurologist relies on the representative from the DBS manufacturer to advise him or her on programming the device. These are signs that the DBS center neurologist has little or no experience with DBS.

The Neuropsychologist

Another important member of the DBS team is the neuropsychologist. A neuropsychologist is a licensed psychologist who has completed postdoctoral training in the specialty of neuropsychology. As a result, the neuropsychologist has extensive knowledge of brain structures and brain function. The neuropsychologist on the DBS team has specialized knowledge and experience in the effects of DBS on brain structures. The DBS neuropsychologist evaluates how behaviors such as thinking and memory are affected by DBS. Because DBS can affect cognition, the neuropsychologist’s role is to test cognitive skills to make sure there are no significant problems with memory, confusion, or depression prior to DBS. After surgery, the neuropsychologist evaluates the cognitive effects of DBS. If cognitive problems are identified, the neuropsychologist may make recommendations for treatment. When choosing a DBS center, make sure that there is a neuropsychologist on the team with experience in DBS.

Do your Homework!

Learn about DBS and find out about the centers you are considering and the individuals who make up that center. Make sure that you choose a DBS center with a multidisciplinary team of health care professionals who have the training, technology, and expertise in DBS.

Other Members of the Team

The three members listed above are essential for a DBS center. There are usually many other members of the team, although the makeup may be different from center to center. Some centers have a DBS psychiatrist. This is a physician who has completed a 4-year residency in psychiatry. The role of the psychiatrist in DBS is to evaluate for the presence of depression prior to surgery and to manage any mood issues that may arise after surgery. Some have a speech- language pathologist as an integral part of the team. A speech-language pathologist evaluates problems that affect communication. Speech-language pathologists have a minimum of a master’s degree, have completed 300–400 hours of clinical training, and have undergone testing for licensure or registration. The speech- language pathologist on the DBS team can be involved in the presurgical evaluation, as well as follow-up after the DBS is implanted, and may also be present during surgery to evaluate for possible changes in speech and language that might occur when the stimulation is turned on. The DBS center may also have a social worker who is involved in evaluating your living situation, stressors, and other factors that may impact your response and reaction to DBS surgery. The social worker may also be helpful in understanding and managing expectations for the surgery.

There will be other DBS team members who will play an important role in your DBS experience. Nurses and PAs, as well as the clerical staff, will each have a role in your care. When choosing a DBS center, consider how well you are treated before your surgery. This is a good indication of how well you will be treated during and after surgery. For example, are the encounters pleasant? Do they spend sufficient time with you at each encounter? Is the staff able to answer your questions and provide information? Do they appear organized and professional? Consider the ability to communicate with the DBS team. Do they provide a contact person or direct means of reaching them with any questions or concerns? The ability to communicate with the DBS team is critical to your experience.

Learn as much as possible about deep brain stimulation before you undergo surgery. Get a second opinion if you have not already. A lot of people get queasy discussing surgery, but the more information you have, the better equipped you will be to make an informed decision. If your doctor is not willing to take the time to discuss the procedure with you, find one who is.

TALKING TO OTHERS

An excellent way to get information about the DBS team is to speak to others who have gone through the surgery and are being followed at the DBS center. The DBS center should be willing to provide you with the contact information of people who have already been through DBS surgery. If they are unable to do this, be cautious about having your surgery there. Be prepared to talk to other people and ask about their impression of the DBS team. Ask about their experience and whether they would recommend the DBS team. Find out if they had any experiences that would keep them from coming back to this center. Share your particular circumstances and ask for an opinion as to whether they believe the center will provide a good experience for you.

As you consider a DBS team, your family, friends, or others may provide you with insight about your choice of a DBS center. Discuss your options with others to weigh the pros and cons of your decision. If you rely on others for transportation, the location of the center may be vital to your decision. On the other hand, even if you rely on others for transportation, the distance of the center may not be a significant factor to them. It is in your best interest to share information about the DBS center with your family, friends, or others that provide support in your health care needs. Their insight may help you evaluate your options so that you can choose a center that is right for you.

Now that you have decided to have DBS surgery, one of the first and most important decisions to make is which DBS center is right for you. Educate yourself about your options by searching the Internet, consulting with your physician, and speaking with family and friends. Talk to the members of the DBS team to find out about their training and experience. Choosing a convenient location that is near your home will make it much easier to travel back and forth from the many visits that will occur before and after surgery. However, to have the best possible outcome from your DBS, you will also want a center that has an experienced well-trained multidisciplinary DBS team. DBS is a complex procedure that requires expert care to optimize the benefits of DBS. It will be up to you to choose a DBS team that you have confidence will deliver the best care possible.