Neurosurgery registry for continuous improvement of care and quality of life

Dec. 11, 2018

Mayo Clinic has launched a neurosurgery registry designed to further improve patient safety and outcomes. The registry records detailed surgical and patient-reported outcomes for every neurosurgical procedure performed at Mayo Clinic. "Our goal is for the data to inform and direct patient care, in the sense that we use the data to further improve outcomes," says Mohamad Bydon, M.D., a neurosurgeon at Mayo Clinic in Rochester, Minnesota, and the registry's medical director. "As one of the largest-volume neurologic surgery practices, we have the capacity to affect best practices and standards of care and to share what we learn with others."

The registry augments Mayo Clinic's parallel effort to collect samples of every resected brain tumor for genetic analysis and biobank storage. "Mayo Clinic has a strong commitment to individualized medicine. The more data we collect on patients — in terms of clinical presentation, blood work and biomarkers — the better able we are to find treatment paradigms tailored to specific patients," says Selby G. Chen, M.D., a neurosurgeon at Mayo Clinic in Jacksonville, Florida.

Clinical and patient-reported outcomes

Grounded in Mayo Clinic's commitment to evidence-based care, the registry covers all neurosurgeries performed at Mayo's campuses in Minnesota, Florida and Arizona, as well as at the Mayo Clinic Health System sites in Mankato, Minnesota, and Eau Claire and La Crosse, Wisconsin. Launched in mid-2016, the registry includes information from patient surveys in addition to complete clinical and surgical records.

"We expect that information from the registry will inform patient selection for various procedures as well as our pre-surgery guidance to patients about possible surgical outcomes," Dr. Chen says.

Patient input is a key component of the registry. "Historically, health care providers have judged outcomes. The registry makes the patient a partner in these assessments," says Bernard R. Bendok, M.D., chair of Neurosurgery at Mayo Clinic in Phoenix/Scottsdale, Arizona. "Discussions about quality of life have been somewhat ignored in health care. At Mayo Clinic, we want to stay ahead of the curve by measuring and assessing quality of life, educating ourselves and also patients on these issues, and changing course where appropriate."

Dr. Bendok notes that a 30-minute clinical follow-up a year after neurosurgery isn't sufficient to assess quality of life. "You can't just ask a couple questions in the clinic and be done," he says. "Quality of life is a complicated issue. But there are now rigorous, validated surveys that ask the right questions."

Obtaining that detailed information can yield insights that ultimately guide treatment decisions. Dr. Bendok offers a hypothetical example of a patient with a tumor who can expect the same medical outcome, in terms of length of life, after treatment with surgery or radiation. "If radiation requires daily visits to the clinic for 40 days, and causes fatigue and deteriorated social life, then surgery might provide better quality of life," he says. "In addition, with detailed patient surveys, we can drill down on why patients might feel their quality of life is not as good after radiation treatments. Was it the fatigue, or perhaps hair loss or pain? To improve quality of life, we need to measure it."

The registry also enhances Mayo Clinic's team approach to patient care. For example, many patients with spinal conditions also experience depression. "We utilize very specific modules and parameters to assess overall health, including mental health. There are occasions when patients need additional clinical assessment and intervention prior to consideration of a surgery," says Jamal McClendon Jr., M.D., a neurosurgeon at Mayo Clinic's campus in Arizona.

Information collected in the registry is already having an impact on aspects of Mayo Clinic's practice, such as the length of patients' hospital stays. "With the help of colleagues from the Kern Center for the Science of Health Care Delivery and practice leadership, we are using the data to inform our opioid usage for the treatment of pain and sharing that data to help guide treatment throughout Mayo," Dr. Bydon says. "Mayo Clinic has a strong commitment to evidence-based care," he adds. "Our goal is to continuously improve outcomes to benefit our patients."