Chapter 30 - Quality of life outcomes in meningioma surgery

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Abstract

Patient-reported quality of life measures hold the potential to capture the results of meningioma surgery in a more patient-centered and sensitive way than common morbidity measures. However, quality of life measures have not so far been used much in meningioma studies. Disease specific instruments are also lacking along with validation studies in patients with meningioma. While patient-reported quality of life measures may overestimate improvements and underestimate surgery-related deteriorations, quality of life studies still report worse outcomes than the common retrospective review of hospital records. A more widespread use of longitudinal assessment of quality of life would also have the benefit in moving meningioma research from retrospective to prospective, which would lead to superior data quality. Comparisons across studies would also be more valid as the assessment bias resulting from surgeons judging their own results would be avoided.

Introduction

Ernest Amory Codman was the first American doctor to follow the recovery of treated patients in a prospective and systematic manner (Brand, 2009). He kept track of treatments and outcome via “End Result Cards” and followed each patient at least 1 year to observe results and to identify clinical calamities to improve the care of future patients. He also believed that outcome information should be made public to guide patients in their choices between treatments, physicians, and hospitals. Likewise, Harvey Cushing, Codman's friend from Harvard, understood the value of prospectively tracking outcomes with patient-reported data. He retained careful follow-up records by asking his patients to record their status in a letter on the anniversary of their operation (Cohen-Gadol et al., 2005).

Unfortunately, retrospective case series of poor quality are dominating the literature in surgical neuro-oncology a century later, often with surrogate endpoints such as extent of resection (Simpson grade (Simpson, 1957)) and progression-free survival, or home-made and nonvalidated definitions of deficits or complications. It is further known that the most common research method in neurosurgery, namely retrospective assessment of medical records, may greatly underestimate the incidence of new neurologic deficits after brain tumor surgery when compared to patient-reported outcomes (Drewes et al., 2015). However, systematic and prospective outcome assessments with validated clinical outcome measures are largely lacking or still not much embraced. As a result, comparisons across neurosurgical outcome studies are usually invalid due to differences in assessment or case selection. The evidence is not improved by pooling these weaknesses in systematic reviews of heterogeneous studies of low quality and with ill-defined end points as, for example, attempted with gliomas (Solheim et al., 2014a).

There are several key characteristics of a good clinical endpoint (Chin and Lee, 2008). It should:

  • 1.

    be clinically relevant;

  • 2.

    reflect the overall disease being treated closely and comprehensively;

  • 3.

    be rich in information;

  • 4.

    be responsive (sensitive and discriminative, with good distribution);

  • 5.

    be reliable (precise and reproducible, with low variability), even across studies;

  • 6.

    be robust to dropouts and missing data;

  • 7.

    not influence the treatment response or have a biologic effect in and of itself; and

  • 8.

    be practical (implementable at different sites, measurable in all patients, economical, and noninvasive).

In addition to the frequent lack of validation studies that address responsiveness and reliability for outcomes, many utilized outcome measures in meningioma research are simply not clinically relevant or measurable in all patients. For example, Simpson grade 1 (Table 30.1) may not be the goal (or good clinical practice) in all meningioma patients as risks may be unacceptable. Long-term survival may not always be relevant either because few die from their meningioma, and survival, therefore, often reflects comorbidity and age more than the disease itself. Compromising morbidity or quality of life to obtain low recurrence rates is seldom warranted. Thus, without corresponding morbidity data later recurrences of benign lesions with slow growth such as meningiomas (reported as recurrence rates or progression-free survival), may not be very relevant. Tumor control may in most cases be regained after stereotactic radiosurgery or redo operations. Still, progression-free survival is often the primary outcome in many meningioma publications. Since neurosurgeons have to balance the extent of resection or Simpson grade (Table 30.1) against expected risk in a given case, neurologic outcome in terms of acquired neurologic deficits is always relevant. Unfortunately, neurologic function is often not assessed systematically or at agreed time-points (at discharge, at early follow-up, and late follow-up). In addition, cognitive deficits and unspecific surgically acquired symptoms like fatigue and headache are often missed, at least by surgeons (Drewes et al., 2015). Unsurprisingly, surgeons and patients may have different perspectives of what is most important for quality of life and function after surgery. While neurosurgeons tend to focus more on so-called eloquent brain functions (such as motor, language, vision), patient-reported quality of life might be associated more with cognitive functions and epilepsy (Aaronson et al., 2011). Thus, instead of only asking the operating surgeon how the patient is doing, why not simply ask the patients themselves?

Section snippets

Change in Epidemiology, Implications for Surgical Outcomes

Magnetic resonance imaging (MRI) has clearly revolutionized many fields of medicine, not least the field of neurosurgery. In developed countries, MRI installations and MRI use has surged over the last decades. However, the toll for patients can be incidental findings. In asymptomatic volunteers, incidental abnormalities were seen in 18% of cerebral MRI scans, and 2.9% required further referral (Katzman et al., 1999). In another study, 1.6% of healthy volunteers who underwent 1.5-T cerebral MRI

Natural Course of Meningioma

For all conditions, the natural course of the disease should be worse than its treatment. For many patients with meningioma surgery will result in better functions with acceptable risks. However, the end results may not necessary be the correct way to assess risks vs benefits. If meningioma surgery results in opthalmoplegia and severe fatigue in a 60-year-old who would not have experienced the same symptoms for another 15 years if left untreated, the “area under the curve” of morbidity may not

Measuring Quality of Life in Meningioma Patients

Quality of life assessment in meningioma patients is much underutilized. Despite a growing literature on quality of life in meningioma patients (Table 30.2), not much is known about the risks and benefits of meningioma surgery compared to no treatment. Knowledge of quality of life outcomes associated with various tumor locations and various treatment strategies could improve patient selection and settle controversies. A more widespread use of longitudinal quality of life measurements would also

Reported Results of Meningioma Surgery on Quality of Life or Cognitive Functions

There are a few studies that have reported results from quality of life measures or cognitive tests in relation to meningioma surgery worth mentioning here. These are summarized in Table 30.2.

As seen, most studies are small and there is considerable heterogeneity in choice of outcome measures, time of assessment, and patient selection. Also, a few studies assess outcomes both before and after treatment, but none compare treatment to no treatment. It can still be observed that preoperative

Limitations of Patient-Reported Quality of Life Measures

There may be several pitfalls when assessing patient-reported quality of life. First, patient-reported quality of life may be influenced by factors other than the factor of interest (e.g., a diagnosed meningioma). For example, a patient with a suspected meningioma planning to undergo surgery in 2–3 days may be influenced by the upcoming surgery while answering questionnaires concerning social functions or anxiety. Even asymptomatic patients may in theory report poor quality of life just before

Neurocognitive Tests vs Patient-Reported Quality of Life

Cognitive tests or neuropsychologic tests are not patient-reported outcome measures, but can be relevant and patient-centered outcome measures after meningioma treatment. Neurocognitive test may therefore represent an alternative to patient-reported quality of life measures. However, in addition to being time-consuming and demanding for patients, neuropsychologic tests and quality of life measures share several limitations. Management of missing data is a common problem with neuropsychologic

Conclusions

In the era of modern neuroimaging, incidental meningiomas are more common, and surgical indications are more often relative. Unfortunately, knowledge concerning the risks and benefits of surgery remains rather limited as there are few growth dynamic studies and few high quality outcome studies. Also, traditional outcome measures such as survival and progression-free survival are not necessarily good clinical endpoints in meningioma patients. Patient-reported quality of life measures hold

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