Quality of Care and Outcomes in Pediatric Neurosurgery: Incorporating Evidence-Based Practice

Quality of Care

How we define quality of care in neurosurgery is similar to other, especially surgical, subspecialties of medicine. Though not the focus of this chapter, neurosurgeons must first ask what are the indications for surgery, and how does the procedure compare to other surgical or nonsurgical interventions?

Three basic tenets of any intervention are

• (1)

  Is there a survival benefit or alternatively an increase in mortality following an intervention relative to the natural history of the disease?

• (2)

  If there is a survival benefit, what is the child's quality of life or functional status?

• (3)

  What is the cost of the intervention and is the perceived benefit “worth” the cost?

Outcome studies in pediatric neurosurgery have largely focused on reporting clinical data including surgical complications. Importantly, pediatric neurosurgical conditions can dramatically affect development, functional status, and therefore quality of life. However, pediatric neurosurgery has less readily measured health status or health-related quality-of-life outcomes (HRQOL) using validated assessment tools. Health status outcomes differ slightly from HRQOL in that the former is a more objective measure of functioning, whereas the latter incorporates the patient's perception of their own well-being. Both are relevant for neurosurgical diseases, with HRQOL outcomes being especially important in conditions that involve pain symptoms. Though far from perfect, these standardized tools provide a metric to compare different treatments and providers and can further inform practice guidelines.

As reimbursement structures change, neurosurgeons are increasingly expected to justify expensive procedures for relatively rare disease processes, as well as differences in practice patterns to treat those diseases. Differences in reimbursement, even between the neurosurgical subspecialties, put pediatric neurosurgery at a disadvantage. Longitudinal care and the transferability of electronic medical records mean that capturing long-term outcomes is now easier than ever before. Focusing on the quality of care allows hospitals to make widespread improvement measures. Best practice implementation and an improvement in the quality of care can decrease costs by decreasing variations in practice and improving health care efficiency. Making cost decisions based on quality measures in children will benefit the health care system as a whole.

Validated Outcome Measures

Assessing the quality of care necessitates valid and reliable outcome measures that can be applied across institutions. Pediatric neurosurgery has lagged behind in generating outcome studies, despite a growing emphasis across health care on measurable outcomes. In all, 31 articles using HRQOL tools have been published over the past 10 years across three major pediatric neurosurgical journals compared to 55 general pediatric articles in Pediatrics . In pediatric neurosurgery, many tools remain unvalidated and the same tools have not been used consistently between studies. Furthermore, many studies assessing quality of life or functional outcomes in pediatric neurosurgery have relied on outcome measures validated primarily in the adult population and then applied to children. For example, most series assessing pediatric arteriovenous malformations have used the modified Rankin Scale to measure disability, even though this scale has not been validated in the pediatric population. Measures such as independence and the ability to work are less relevant in children. Standardized time points to assess prospectively quality-of-life outcomes are crucial.

Two types of HRQOL outcomes tools exist: those that are generic across health conditions, and those that are disease specific. Neurosurgeons who are developing HRQOL tools must also consider whether to subcategorize health factors and whether to take into account age-specific considerations.