Decision-Making in Epilepsy Surgery: Why Patients Choose or Defer Surgical Intervention

Christopher Todd Anderson, John R. Pollard, Eva Noble, Ram Mani, Kathy Lawler
Penn Epilepsy Center, University of Pennsylvania, Philadelphia, PA
RATIONALE: Although good candidates for epilepsy surgery often decline a procedure, even after having undergone a tedious and expensive presurgical evaluation, there is no study that quantitatively explores how much socio-cultural, medical, personal, and neuropsychological factors affect patients decision-making for or against surgery. We sought to uncover the reasons why some candidates for surgery undergo a presurgical evaluation, are offered surgery but then decline. Our ultimate goal was to determine what issues should be addressed with these patients throughout presurgical evaluation to prevent unnecessary testing and help candidates make appropriate, evidence-based decisions. We had 3 hypotheses-- factors that would be different between surgery choosers and refusers: 1) Those refusing surgery were more frightened of some aspect of surgery, and this fear of surgery was a salient factor in their decision, 2) Those refusing surgery are more tolerant of their epilepsy, judging it not as disabling or dangerous as those who chose surgery, 3) We questioned whether we would find a cognitive or neuropsychological difference between those choosing and refusing surgery. METHODS: To gain subjective information from participants regarding attitudes towards surgery, we developed a novel questionnaire. We gathered objective information through review of medical charts, pre-surgical imaging (PET & MRI), video-EEG results, and neuropsychological tests. An interview was completed either in person at our neurology clinic or over the phone, and took 1560 minutes. RESULTS: 23 post-surgery patients participated and 9 surgical refusers participated. There were several core factors that revealed significant differences between the two groups (Wilcoxen Ranksum p values): frequency and severity of seizures (p = 0.002), length of time with seizures (p = 0.031), the stigma of having epilepsy (p = 0.022), embarrassment from seizures in public (p = 0.037), the need/desire to be seizure-free (p = 0.000), and frustration with epilepsy (p = 0.000), general comfort with surgery (p = 0.019), fear of surgery in general (p = 0.005), fear of complications during surgery (p = 0.002), and concerns that my other health conditions may impact surgery (p = 0.045). There was also a significant difference for the chances of success quoted by the doctor (p = 0.040). Lastly, there was a difference across groups for 'belief that surgery would work' (p = 0.002). The non-surgical group cited surgical fears as more important that the surgical group. CONCLUSIONS: Our study provides differences between pre-surgical epilepsy patients who chose to have the procedure and those who opted against a proposed procedure. These differences are social, personal, and medical, and help create a profile of patients who will opt against a procedure despite medical need and physician recommendation. These results could aid in focusing on specific issues with patients who could benefit from surgery as well as prevent unnecessary pre-surgical evaluations for patients who are adamantly against surgery regardless of medical opinion.
Table 1a. Demographic characteristics of participants (ordinal information)
Surgical Group (n=23) Age (years) Education (years, 12 = hs grad) Total years with seizures (years) Age at onset of seizures (years) Current AEDs (number) AED exposure (number) 43 (32-47) 14 (12-16) 11 (9-21) 22 (13-26) 1 (1-2) 5 (3-6) Wilcoxen Ranksum p-value 0.046 0.163 0.487 0.425 0.082 0.056 Comorbid Depression No 11 (47.8%) Yes 12 (52.2%) Other Comorbid Psychiatric Disorders None 19 (82.6%) Anxiety 1 (4.4%) Mood Disorder 1 (4.4%) ADHD 2 (8.7%) History of Alcohol or Illegal Drug Use No 22 (95.6%) Yes 1 (4.4%) History of Smoking Cigarettes No 19 (82.6%) Yes 4 (17.4%) Prior Surgical History No 11 (47.8%) Yes 12 (52.2%) Prior Bad Surgical Experience No 20 (87.0%) Yes 3 (13.0%) 3 (33.3%) 6 (66.7%) 0.005 4 (44.4%) 4 (44.4%) 1 (11.1%) 0 (0%) 1.000 9 (100%) 0 (0%) 1.000 7 (77.8%) 2 (22.2%) 0.249 2 (22.2%) 7 (77.8%) 1.000 8 (88.9%) 1 (11.1%)

Table 1b continued
Surgical Group (n=23) NonSurgical Group (n=9) Fisher Exact p-value 0.694

Table 3. Importance of Factors in Epilepsy Surgery Decision-Making

Surgical Group (N=23) Factors Details of Epilepsy Frequency & severity of seizures: How long Ive had seizures: Effects of Epilepsy Work limitations as a result of seizures: The stigma of having epilepsy: Embarrassment from seizures in public: Fear of death from seizures: Fear of physical injury from seizures: Need/desire to be seizure-free: Frustration with epilepsy: Disability benefits: Other people or group's beliefs Opinions of family members: Opinions of friends: My faith or religion: Surgical fears General comfort with surgery (how important): Fear of surgery in general: Fear of being put under anesthesia: Fear that I wont wake up after surgery: Fear of complications during surgery: Fear of memory (or other) cognitive problems after surgery: Concerns that other health conditions may impact surgery: Hopes after surgery Career opportunities: Future ability to drive: 0.327 Doctor's information about surgery The chances of success quoted to me by my doctor: The risk of complications during surgery quoted to me by my doctor: The risk of disability after surgery quoted to me by my doctor: 3.304 2.13 1.565 1.11 1.42 1.38 2.333 2.556 2.222 1.4 1.5 1.9 0.040 0.413 0.289 2.13 2.652 2.3 1.7 1.555 1.778 1.7 1.8 0.399 0.143 2 1.391 0.696 1.086 1.739 2.478 0.652 1.48 1.44 1.3 1.54 1.54 1.5 1.15 3.333 3.111 1.222 1.667 3.556 3 2.111 0.9 1.2 1.5 1.7 0.5 1.7 2 0.019 0.005 0.218 0.254 0.002 0.172 0.045 2 1.261 1.565 1.6 1.39 1.75 2.444 0.667 0.778 1.7 1 1.6 0.436 0.355 0.236 2.435 2.435 2.522 1.652 2.435 3.783 3.522 0.869 1.7 1.8 1.62 1.5 1.62 0.6 0.59 1.444 0.889 1.111 0.889 1.444 2 1.333 0.556 1.4 1.8 1.7 1.4 1.2 1.2 1.4 1 0.082 0.022 0.037 0.154 0.081 0.000 0.000 0.747 3.478 2.957 0.79 1.35 1.889 1.556 1.4 1.7 0.002 0.031 Mean SD NonSurgical Group (N=9) Mean SD Wilco xen Ranks um pvalue

Non-Surgical Group (n=9) 54 (42-56) 12 (12-14) 14 (10-35) 21 (14-44) 2 (2-3) 6 (5-7)

Table 1 gives demographic information of our study population. Numbers are provided as the median (then the range of 25th to 75th percentile).

Table 1b. Demographic characteristics of participants (categorical information)

Surgical Group (n=23) Birthplace NJ PA Outside the US Current Location NJ PA Marital Status Single Married Divorced Children No Yes Ethnicity (self reported) White Black Indian Hispanic 11 (47.8%) 12 (52.2%) 20 (87.0%) 2 (8.7%) 1 (4.3%) 0 (0%) 4 (44.4%) 5 (55.6%) 0.016 4 (44.4%) 4 (44.4%) 0 (0%) 1 (11.1%) 0.243 6 (66.7%) 3 (33.3%) 0.109 3 (33.3%) 6 (66.7%) 9 (39.1%) 12 (52.2%) 2 (8.70%) 4 (44.4%) 5 (55.6%) 0 (0%) 1.000 2 (8.7%) 18 (78.3%) 1 (4.3%) 2 (8.7%) 21 (91.3%) 0 (0%) 8 (88.9%) 0 (0%) 1.000 1 (11.1%) 8 (88.9%) 1.000 Non-Surgical Group (n=9) Fisher Exact pvalue 1.000

Table 2. Epilepsy characteristics

Surgical Group (n=23) Seizure Frequency (per month) 1-3 4-9 10+ Types of Seizures Complex Partial Generalized Tonic-Clonic (GTC) Simple Partial and Complex Partial Simple Partial and GTC Complex Partial and GTC Simple Partial, Complex Partial and GTC Proposed/Completed Procedure Left Temporal Lobectomy Other Left Resection Right Temporal Lobectomy Other Right Resection Other Cause of Epilepsy Cryptogenic (including mesial temporal sclerosis) Traumatic Brain Injury Congenital Brain Abnormality 16 (69.6%) 5 (21.7%) 2 (8.7%) 6 (66.7%) 1 (11.1%) 2 (22.2%) 12 (52.2%) 0 (0%) 2 (8.7%) 1 (4.3%) 6 (26.1%) 2 (8.7%) 2 (22.2%) 0 (0%) 2 (22.%) 1 (11.1%) 2 (22.2%) 2 (22.2%) 0.308 10 (43.5%) 1 (4.3%) 11 (47.8%) 1 (4.3%) 0 (0%) 6 (66.7%) 0 (0%) 2 (22.2%) 0 (0%) 1 (11.1%) 0.694 6 (26.1%) 5 (21.7%) 12 (52.2%) 4 (44.4%) 2 (22.2%) 3 (33.3%) Non-Surgical Group (n=9) Fisher Exact p-value 0.287

Personal beliefs about the procedure My own understanding of the surgical procedure: My belief that surgery would work: Knowledge of others successes or failures with epilepsy surgery: The degree to which surgical treatment is proven scientifically: Medication effects The number of medications I take (or took pre-surgery): Physical side effects of seizure medications: Cognitive or emotional side effects of seizure medication: Other treatment options Alternative treatments that may be available to me in the near future Availability of the vagal nerve stimulator: The surgeon recommended the vagal nerve stimulator: The vagal nerve stimulator seemed safer: 0.522 0.348 0.348 0.251 1.08 0.94 0.83 0.75 1.444 0.778 0.444 0.667 1.8 1.2 1.3 1.3 0.184 0.229 0.765 0.445 2.869 2.174 2.13 1.36 1.44 1.58 2.222 1.778 1.556 1.3 1.6 1.7 0.150 0.467 0.354 2.565 3.565 1.348 2.739 1.12 0.66 1.58 1.14 2.778 2.22 1.778 2.667 1.2 1.2 1.6 1.3 0.602 0.002 0.448 0.982

Current Employment No 9 (39.1%) Yes 14 (60.9%) On Social Security Disability Benefits No 16 (69.6%) Yes 7 (30.4%)