Introduction

Outcomes and Quality of Life (QOL) assessment instruments are important for assessing the results of surgical and radiosurgical treatment, as well as comparing results across studies [16]. Many of these instruments assess QOL but not in a manner that addresses the CNS symptoms/signs of specific tumor sites. This becomes increasingly relevant when dealing with tumors that tend to arise in specific intracranial locations which can lead to distinct symptom complexes with unique effects on QOL that can be overlooked by less specific QOL instruments. Recognizing these location-specific symptom complexes allow us the opportunity to personalize the QOL assessment towards distinct patient groups.

Meningiomas comprise one such class of location-specific intracranial tumors [31]. Accounting for some 20% of intracranial tumors, they are generally histologically benign and slow growing, but may become locally invasive. Due to the risk of tumor growth and development of focal neurological deficits from mass effect, standard treatment usually consists of surgical resection or stereotactic radiosurgery.

QOL assessment provides information regarding efficacy of surgical/radiosurgical treatment and may serve as an important decision-making tool for patients and physicians who are weighing the risks and benefits of brain surgery, especially if their meningioma is of the benign variety. While there are a variety of outcome assessment tools currently available, they vary widely in terms of scope (post-surgery QOL, post-cancer therapy QOL, post-brain surgery QOL, etc.), and none are currently location-specific. Currently, the instrument most accurately targeted at assessing QOL following brain tumor resection is the validated Functional Assessment of Cancer Therapy-Brain (FACT-BR) [22, 23, 40].

The location-specific nature of clinical symptoms and signs of intracranial meningiomas provides an opportunity for an even more targeted QOL assessment; one that takes into account site-specific symptoms [42]. This would allow for a more detailed examination of an individual patient’s QOL based on tumor site and pre/post-surgery signs and symptoms. With these goals in mind, FACT-MNG was created. An important part of developing such an instrument was making it available freely in a web based platform so that patients could access the questionnaire on regular set intervals without the need for direct physician contact or instruction. The VisionTree Optimal Care™ (VTOC) secure web-based portal allows for patients to enter the site through self-registration and complete the FACT-MNG electronically. Upon registration, the patient automatically receives an email with their secure login information providing ongoing access to the survey. VTOC includes full reporting/tracking capabilities to query the data which can be exported to Excel for additional analysis.

Methods

Initial data was gathered by way of reviewing relevant literature (via PubMed) which discussed and examined intracranial meningioma surgical therapy as well as subsequent outcomes. With 38 papers [1–15, 17–22, 24–30, 32–41] in hand meeting our search criteria, we reviewed the assessment instruments utilized in each. While all of the papers included outcomes, when it came to QOL assessment, 2 of the 38 used SF36 [3, 19, 39] others used FACT-BR [5, 22, 40], and 8 used a more basic patient functionality-oriented Karnofsky Performance Status (KPS) comparison [10, 13, 28, 32, 34, 36, 37], and less than half (15 of 38 papers) utilized any QOL instrument at all (FACT-BR, SF36, KPS Scale, or some other instrument). None of the papers utilized site-specific questions.

Results and discussion

To address the issue of site specificity, we created FACT-MNG (Functional Assessment of Cancer Therapy-Meningioma), an amalgamation of FACT-BR, SF36, and newly formulated questions addressing tumor site-specific signs and symptoms. Specifically, we started with FACT-BR as our base and added questions from SF36 that were more detailed in ascertaining the patient’s physical capabilities (e.g., ability to perform light, mild, or strenuous activity without difficulty) (Table 1). Our most significant modification was the creation and inclusion of questions that were relevant to the signs and symptoms that characterize one of 11 tumor sites: olfactory groove, tuberculum sella, optic nerve sheath, sphenoid wing, cavernous sinus, parasagittal, tentorium cerebelli, petroclival region, cerebellopontine angle, cerebellar convexity, and foramen magnum (Table 2, 3).

Table 1 SF-36 Questions incorporated into FACT-MNG
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Table 2 Site-specific questions incorporated into FACT-MNG
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Table 3 FACT-MNG
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Following its creation, FACT-MNG was converted into a web-based format (currently available for patients/physicians to download for free at https://www.optimalcare.com. In addition to the benefits of offering FACT-MNG digitally (streamlined data collection, storage, and analysis), the dynamic delivery offered by a web-based application allows patients to only answer questions pertinent to their tumor’s site. At UCSF we plan to introduce patients to the web site and questionnaire with a small business card containing the web site URL and suggested time interval for assessment post-operatively at 3, 6, 12, 18, 24, 36, 48, 60, and 72 months. Any additional intervention will re-start the assessment clock for the initial intervention and begin a new follow-up session. The VTOC system can be configured to release the FACT-MNG into the patient’s portal at the specific time points noted above. An email alert is automatically sent to remind the patient to login and complete the survey at each time interval. The process is fully automated within VTOC using templates and calendar reminders to ensure accuracy and compliance. A subset of patients may not be proficient with or have access to computers, either due to educational differences, socioeconomic status, or as a result of their disease process and/or treatment. For these selected patients, notifications by mail can be utilized.

Conclusion

With QOL assessment becoming increasingly important as an information, education and –outcomes assessment tool for both physicians and patients, relying on an outcome instrument too general in scope may leave more detailed, but nonetheless pertinent, issues unexplored and unmeasured. While FACT-BR has been validated as an assessment tool pertaining to brain tumors in general, those tumors which associated with characteristic site-specific signs and symptoms readily lend themselves towards QOL assessment with an even further refined scope. Intracranial meningiomas offer one such opportunity and, on account of their comprising almost one-fifth of all intracranial tumors, warrant the development of an outcome instrument with a narrower scope.

This instrument is not yet clinically validated. Further examination of FACT-MNG should revolve around qualifying its validity as compared to the outcome assessment provided by other QOL instruments (most notably FACT-BR) following meningioma surgical therapy. The authors of this paper plan to investigate the use of this instrument in a prospective fashion on their patient population and report on the results at a future date.