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 .
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 .
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 .
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 ,
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 .
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 [ 115 ,
1722 , 2430 , 3241 ] 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 ) .
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  1sf-36 questions incorporated into fact - mngnot at alla little bitsomewhatquite a bitvery muchi am limited in performing vigorous activities , such as running , lifting heavy objects , participating in strenuous sports01234i am limited in performing moderate activities , such as moving a table , pushing a vacuum cleaner , bowling , or playing golf01234i have difficulty climbing several flights of stairs01234i have difficulty walking several blocks01234i have difficulty bathing or dressing myself01234table  2site - specific questions incorporated into fact - mngnot at alla little bitsomewhatquite a bitvery mucholfactory groove meningioma  my sense of smell is altered01234  my sense of taste is altered01234  my vision is altered01234  my short term memory is worse01234tuberculum sellae meningioma  my vision is altered01234  compared to before my surgery , my vision is improved01234  my short term memory is worse01234optic nerve sheath meningioma  my vision is altered01234  compared with prior to treatment , my vision is improved01234sphenoid wing meningioma  my vision is altered01234  compared with prior to treatment , my vision is improved01234  i have numbness on my forehead01234  i have numbness on my cheek01234  i have double vision01234  my short term memory is worse01234cavernous sinus meningioma  my vision is altered01234  i have double vision01234  i have numbness on my forehead01234  i have numbness on my cheek01234  i have numbness on my chin01234parasagittal / falx meningioma  my short term memory is worse01234  my leg is weak01234  my leg is numb01234  my arm is weak01234  my arm is numb01234  i have a blind spot in my vision01234tentorial meningioma  my vision is altered01234  i have double vision01234  i have numbness on my face01234  my short term memory is worse01234  i have a blind spot in my vision01234petroclival meningioma  my vision is altered01234  i have double vision01234  i have numbness on my face01234  my short term memory is worse01234  my coordination is affected01234  my arm is uncoordinated01234  my leg is uncoordinated01234  my hearing is worse than prior to treatment01234  my balance is worse than prior to treatment01234cerebellopontine angle ( cpa ) meningioma  i have numbness on my face01234  i have pain in my face01234  my hearing is worse than prior to treatment01234  i have ringing in my ear on the side of surgery01234  i have weakness of my face01234  i have problems with dizziness01234  my balance is worse than prior to treatment01234  my coordination is affected01234  my arm is uncoordinated01234  my leg is uncoordinated01234cerebellar convexity meningioma  my coordination is affected01234  my arm is uncoordinated01234  my leg is uncoordinated01234  my balance is worse than prior to treatment01234  my arm is weak01234  my leg is weak01234  my arm is numb01234  my leg is numb01234foramen magnum meningioma  i have neck pain01234  my speech is slurred01234  i have trouble swallowing01234  my voice is hoarse01234  my balance is worse than prior to treatment01234  my walking is worse than prior to treatment01234  i have shoulder pain01234table  3fact - mngnot at alla little bitsomewhatquite a bitvery muchphysical well - being  i have a lack of energy01234  i have nausea01234  because of my physical condition , i have trouble meeting the needs of my family01234  i have pain01234  i am bothered by side effects of treatment01234  i feel ill01234  i am forced to spend time in bed01234  i am limited in performing vigorous activities , such as running , lifting heavy objects , participaing in strenuous sports01234  i am limited in performing moderate activities , such as moving a table , pushing a vacuum cleaner , bowling , or playing golf01234  i have difficulty climbing several flights of stairs01234  i have difficulty walking several blocks01234  i have difficulty bathing or dressing myself01234social / family well - being  i feel close to my friends01234  i get emotional support from my family01234  i get support from my friends01234  my family has accepted my illness01234  i am satisfied with family communication about my illness01234  i feel close to my partner ( or the person who is my main support)01234regardless of your current level of sexual activity , please answer the following question .
if you prefer not to answer it , please check this box  and go to the next section  i am satisfied with my sex life01234emotional well - being  i feel sad01234  i am satisfied with how i am coping with my illness01234  i am losing hope in the fight against my illness01234  i feel nervous01234  i worry about dying01234  i worry that my condition will get worse01234functional well - being  i am able to work ( include work at home)01234  my work ( include work at home ) is fulfilling01234  i am able to enjoy life01234  i have accepted my illness01234  i am sleeping well01234  i am enjoying things i usually do for fun01234  i am content with the quality of my life right now01234additional concerns  i am able to concentrate01234  i have had headaches01234  i have had seizure convulsions01234  i can remember new things01234  i get frustrated that i can not do the things i used to01234  i am afraid of having a seizure ( convulsion)01234  i have trouble with my eyesight01234  i feel independent01234  i have trouble hearing01234  i am able to find the right word(s ) to say what i mean01234  i have difficulty expressing my thoughts01234  i am bothered by the change in my personality01234  i am able to make decisions and take responsibility01234  i am bothered by the drop in my contribution to the family01234  i am able to put my hands together01234  i need help caring for myself ( bathing , dressing , eating , etc.)01234  i am able to my thoughts into action01234  i am able to read like i m used to01234  i am able to write like i m used to01234  i am able to drive a vehicle ( my car , truck , etc.)01234tumor site - specific questionsolfactory groove meningioma  my sense of smell is altered01234  my sense of taste is altered01234  my vision is altered01234  my short term memory is worse01234tuberculum sellae meningioma  my vision is altered01234  compared to before my surgery , my vision is improved01234  my short term memory is worse01234optic nerve sheath meningioma  my vision is altered01234  compared with prior to treatment , my vision is improved01234sphenoid wing meningioma  my vision is altered01234  compared with prior to treatment , my vision is improved01234  i have numbness on my forehead01234  i have numbness on my cheek  i have double vision01234  my short term memory is worse01234cavernous sinus meningioma  my vision is altered01234  i have double vision01234  i have numbness on my forehead01234  i have numbness on my cheek01234  i have numbness on my chin01234parasagittal / falx meningioma  my short term memory is worse01234  my leg is weak01234  my leg is numb01234  my arm is weak01234  my arm is numb01234  i have a blind spot in my vision01234tentorial meningioma  my vision is altered01234  i have double vision01234  i have numbness on my face01234  my short term memory is worse01234  i have a blind spot in my vision01234petroclival meningioma  my vision is altered01234  i have double vision01234  i have numbness on my face01234  my short term memory is worse01234  my coordination is affected01234  my arm is uncoordinated01234  my leg is uncoordinated01234  my hearing is worse than prior to treatment01234  my balance is worse than prior to treatment01234cerebellopontine angle ( cpa ) meningioma  i have numbness on my face01234  i have pain in my face01234  my hearing is worse than prior to treatment01234  i have ringing in my ear on the side of surgery01234  i have weakness of my face01234  i have problems with dizziness01234  my balance is worse than prior to treatment01234  my coordination is affected01234  my arm is uncoordinated01234  my leg is uncoordinated01234cerebellar convexity meningioma  my coordination is affected01234  my arm is uncoordinated01234  my leg is uncoordinated01234  my balance is worse than prior to treatment01234  my arm is weak01234  my leg is weak01234  my arm is numb01234  my leg is numb01234foramen magnum meningioma 
i have neck pain01234  my speech is slurred01234  i have trouble swallowing01234  my voice is hoarse01234  my balance is worse than prior to treatment01234  my walking is worse than prior to treatment01234  i have shoulder pain01234 sf-36 questions incorporated into fact - mng site - specific questions incorporated into fact - mng 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 .
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 .
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 .
 to formulate functional assessment of cancer therapy - meningioma ( fact - mng ) , a web - based tumor site - specific outcome instrument for assessing intracranial meningioma patients following surgical resection or stereotactic radiosurgery . 
 we surveyed the relevant literature available on intracranial meningioma surgery and subsequent outcomes ( 38 papers ) , making note of which , if any , qol / outcome instruments were utilized . 
 none of the surgveyed papers included qol assessment specific to tumor site . 
 we subsequently developed questions that were relevant to the signs and symptoms that characterize each of 11 intracranial meningioma sites , and incorporated them into a modified combination of the functional assessment of cancer therapy - brain ( fact - br ) and sf36 outcome instruments , thereby creating a new tumor site - specific outcome instrument , fact - mng . with outcomes analysis of surgical and radiosurgical treatments becoming more important , 
 measures of the adequacy and success of treatment are needed . 
 fact - mng represents a first effort to formalize such an instrument for meningioma patients . 
 questions specific to tumor site will allow surgeons to better assess specific quality of life issues not addressed in the past by more general questionnaires . 