| Literature DB >> 24159385 |
Christopher Todd Anderson1, Eva Noble, Ram Mani, Kathy Lawler, John R Pollard.
Abstract
Surgical resection for well-selected patients with refractory epilepsy provides seizure freedom approximately two-thirds of the time. Despite this, many good candidates for surgery, after a presurgical workup, ultimately do not consent to a procedure. The reasons why patients decline potentially effective surgery are not completely understood. We explored the socio cultural, medical, personal, and psychological differences between candidates who chose (n = 23) and those who declined surgical intervention (n = 9). We created a novel questionnaire addressing a range of possible factors important in patient decision making. We found that patients who declined surgery were less bothered by their epilepsy (despite comparable severity), more anxious about surgery, and less likely to listen to their doctors (and others) and had more comorbid psychiatric disease. Patients who chose surgery were more embarrassed by their seizures, more interested in being "seizure-free", and less anxious about specific aspects of surgery. Patient attitudes, beliefs, and anxiety serve as barriers to ideal care. These results can provide opportunities for education, treatment, and intervention. Additionally, patients who fit a profile of someone who is likely to defer surgery may not be appropriate for risky and expensive presurgical testing.Entities:
Year: 2013 PMID: 24159385 PMCID: PMC3789484 DOI: 10.1155/2013/309284
Source DB: PubMed Journal: Epilepsy Res Treat ISSN: 2090-1348
Demographic characteristics of participants.
| Surgical group ( | Nonsurgical group ( |
| |
|---|---|---|---|
| Age (years) | |||
| Median (IQR) | 43 (32–47) | 54 (42–56) |
|
| Education (years)* | |||
| Median (IQR) | 14 (12–16) | 12 (12–14) | 0.163 |
| Birthplace | 1.000 | ||
| NJ | 2 (8.7%) | 0 (0%) | |
| PA | 18 (78.3%) | 8 (88.9%) | |
| Other in the USA | 2 (8.7%) | 1 (11.1%) | |
| Outside the USA | 1 (4.3%) | 0 (0%) | |
| Current location | 1.000 | ||
| NJ | 2 (8.7%) | 1 (11.1%) | |
| PA | 21 (91.3%) | 8 (88.9%) | |
| Marital status | 1.000 | ||
| Single | 9 (39.1%) | 4 (44.4%) | |
| Married | 12 (52.2%) | 5 (55.6%) | |
| Divorced | 2 (8.70%) | 0 (0%) | |
| Children | 1.000 | ||
| No | 11 (47.8%) | 4 (44.4%) | |
| Yes | 12 (52.2%) | 5 (55.6%) | |
| Self-reported ethnicity |
| ||
| White | 20 (87.0%) | 4 (44.4%) | |
| Black | 2 (8.7%) | 4 (44.4%) | |
| Indian | 1 (4.3%) | 0 (0%) | |
| Hispanic | 0 (0%) | 1 (11.1%) | |
| Currently employed | 0.243 | ||
| No | 9 (39.1%) | 6 (66.7%) | |
| Yes | 14 (60.9%) | 3 (33.3%) | |
| On social security disability benefits | 0.109 | ||
| No | 16 (69.6%) | 3 (33.3%) | |
| Yes | 7 (30.4%) | 6 (66.7%) | |
| Comorbid depression | 0.694 | ||
| No | 11 (47.8%) | 3 (33.3%) | |
| Yes | 12 (52.2%) | 6 (66.7%) | |
| Other comorbid psychiatric disorders |
| ||
| None | 19 (82.6%) | 4 (44.4%) | |
| Anxiety | 1 (4.4%) | 4 (44.4%) | |
| Mood disorder | 1 (4.4%) | 1 (11.1%) | |
| ADHD | 2 (8.7%) | 0 (0%) | |
| History of alcohol or illegal drug use | 1.000 | ||
| No | 22 (95.6%) | 9 (100%) | |
| Yes | 1 (4.4%) | 0 (0%) | |
| History of smoking cigarettes | 1.000 | ||
| No | 19 (82.6%) | 7 (77.8%) | |
| Yes | 4 (17.4%) | 2 (22.2%) | |
| Prior surgical history | 0.249 | ||
| No | 11 (47.8%) | 2 (22.2%) | |
| Yes | 12 (52.2%) | 7 (77.8%) | |
| Prior bad surgical experience | 1.000 | ||
| No | 20 (87.0%) | 8 (88.9%) | |
| Yes | 3 (13.0%) | 1 (11.1%) |
Ordinal data was compared using the Wilcoxen rank-sum test. Categorical data was compared using Fischer's test. P values <0.05 considered significant. *12 years education = high school graduate.
Epilepsy characteristics of participants.
|
| Surgical group ( | Nonsurgical group ( |
|
|---|---|---|---|
| Total years with seizures (years) | |||
| Median (IQR) | 11 (9–21) | 14 (10–35) | 0.487 |
| Age at onset of seizures (years) | |||
| Median (IQR) | 22 (13–26) | 21 (14–44) | 0.425 |
| Years since procedure or decision | |||
| Median (IQR) | 4 (2–7) | 1 (1-1) |
|
| Current number of AEDs being taken | |||
| Median (IQR) | 1 (1-2) | 2 (2-3) | 0.082 |
| Total AEDs tried until procedure or decision | |||
| Median (IQR) | 5 (3–6) | 6 (5–7) | 0.056 |
| Seizure frequency (per month) | 0.287 | ||
| 1–3 | 6 (26.1%) | 4 (44.4%) | |
| 4–9 | 5 (21.7%) | 2 (22.2%) | |
| 10+ | 12 (52.2%) | 3 (33.3%) | |
| Types of seizures | 0.327 | ||
| Complex partial | 12 (52.2%) | 2 (22.2%) | |
| Generalized tonic clonic (GTC) | 0 (0%) | 0 (0%) | |
| Simple partial and complex partial | 2 (8.7%) | 2 (22.%) | |
| Simple partial and GTC | 1 (4.3%) | 1 (11.1%) | |
| Complex partial and GTC | 6 (26.1%) | 2 (22.2%) | |
| Simple partial, complex partial, and GTC | 2 (8.7%) | 2 (22.2%) | |
| Proposed/completed procedure | 0.308 | ||
| Left temporal lobectomy | 10 (43.5%) | 6 (66.7%) | |
| Another left resection | 1 (4.3%) | 0 (0%) | |
| Right temporal lobectomy | 11 (47.8%) | 2 (22.2%) | |
| Another right resection | 1 (4.3%) | 0 (0%) | |
| Other | 0 (0%) | 1 (11.1%) | |
| Cause of epilepsy | 0.694 | ||
| Cryptogenic (including mesial temporal sclerosis) | 16 (69.6%) | 6 (66.7%) | |
| Traumatic brain injury | 5 (21.7%) | 1 (11.1%) | |
| Congenital brain abnormality | 2 (8.7%) | 2 (22.2%) |
Ordinal data was compared using the Wilcoxen rank-sum test. Categorical data was compared using Fischer's test. P values <0.05 considered significant.
Importance of factors in epilepsy surgery decision making.
| Surgical group ( | Nonsurgical group ( |
| |
|---|---|---|---|
| Details of epilepsy | |||
| Frequency and severity of seizures | 3.48 (0.8) | 1.89 (1.4) |
|
| How long I have had seizures | 2.957 (1.4) | 1.56 (1.7) |
|
| Effects of epilepsy | |||
| Work limitations as a result of seizures | 2.435 (1.7) | 1.44 (1.4) | 0.082 |
| The stigma of having epilepsy | 2.435 (1.8) | 0.89 (1.8) |
|
| Embarrassment from seizures in public | 2.522 (1.6) | 1.11 (1.7) |
|
| Fear of death from seizures | 1.652 (1.5) | 0.89 (1.4) | 0.154 |
| Fear of physical injury from seizures | 2.435 (1.6) | 1.44 (1.2) | 0.081 |
| Need/desire to be seizure-free | 3.783 (0.6) | 2.0 (1.2) |
|
| Frustration with epilepsy | 3.522 (0.6) | 1.33 (1.4) |
|
| Disability benefits | 0.869 (1.4) | 0.56 (1.0) | 0.747 |
| Other people or group's beliefs | |||
| Opinions of family members | 2.0 (1.6) | 2.44 (1.7) | 0.436 |
| Opinions of friends | 1.261 (1.4) | 0.67 (1.0) | 0.355 |
| My faith or religion | 1.565 (1.8) | 0.78 (1.6) | 0.236 |
| Surgical fears | |||
| General comfort with surgery | 2.0 (1.5) | 3.33 (0.9) |
|
| Fear of surgery in general | 1.391 (1.4) | 3.11 (1.2) |
|
| Fear of being put under anesthesia | 0.696 (1.3) | 1.22 (1.5) | 0.218 |
| Fear that I will not wake up after surgery | 1.086 (1.5) | 1.67 (1.7) | 0.254 |
| Fear of complications during surgery | 1.739 (1.5) | 3.56 (0.5) |
|
| Fear of memory (or other) cognitive problems after surgery | 2.478 (1.5) | 3.0 (1.7) | 0.172 |
| Concerns that my other health conditions may impact surgery | 0.652 (1.2) | 2.11 (2.0) |
|
| Hopes after surgery | |||
| Career opportunities | 2.13 (2.3) | 1.56 (1.7) | 0.399 |
| Future ability to drive | 2.652 (1.7) | 1.78 (1.8) | 0.143 |
| Doctor's information about surgery | |||
| The chances of success quoted to me by my doctor | 3.304 (1.1) | 2.33 (1.4) |
|
| The risk of complications during surgery quoted to me by my doctor | 2.13 (1.4) | 2.56 (1.5) | 0.413 |
| The risk of disability after surgery quoted to me by my doctor | 1.565 (1.4) | 2.22 (1.9) | 0.289 |
| Personal beliefs about the procedure | |||
| My own understanding of the surgical procedure | 2.565 (1.1) | 2.78 (1.2) | 0.602 |
| My belief that surgery would work | 3.565 (0.7) | 2.22 (1.2) |
|
| Knowledge of others' successes or failures with epilepsy surgery | 1.348 (1.6) | 1.78 (1.6) | 0.448 |
| The degree to which surgical treatment is proven scientifically | 2.739 (1.1) | 2.67 (1.3) | 0.982 |
| Medication effects | |||
| The number of medications I take (or took presurgery) | 2.869 (1.4) | 2.22 (1.3) | 0.150 |
| Physical side effects of seizure medications | 2.174 (1.4) | 1.78 (1.6) | 0.467 |
| Cognitive or emotional side effects of seizure medication | 2.13 (1.6) | 1.56 (1.7) | 0.354 |
| Other treatment options | |||
| Alternative treatments that may be available to me in the near future | 0.522 (1.1) | 1.44 (1.8) | 0.184 |
| Availability of the vagal nerve stimulator | 0.348 (0.9) | 0.78 (1.2) | 0.229 |
| The surgeon recommended the vagal nerve stimulator | 0.348 (0.8) | 0.44 (1.3) | 0.765 |
| The vagal nerve stimulator seemed safer | 0.251 (0.8) | 0.67 (1.3) | 0.445 |
Values reported as mean (standard deviation). P value provided by the Wilcoxen rank-sum test.
Patient sources of information and influences.
| Surgical group ( | Nonsurgical group ( |
| |
|---|---|---|---|
| Where did the patient gain the majority of their information regarding the surgical procedure? | 0.667 | ||
| My epilepsy doctor | 20 (87.0%) | 8 (88.9%) | |
| My neurosurgeon | 7 (30.4%) | 1 (11.1%) | |
| A former patient who had surgery | 1 (4.3%) | 0 (0%) | |
| Viewing the informational DVD, provided by the Penn Epilepsy Center | 1 (4.3%) | 0 (0%) | |
| My family and friends | 1 (4.3%) | 0 (0%) | |
| The internet | 5 (21.7%) | 1 (11.1%) | |
| Who is most influential in the patient's decision? | 0.234 | ||
| My epilepsy doctor | 12 (52.2%) | 3 (33.3%) | |
| My neurosurgeon | 8 (34.8%) | 0 (0%) | |
| A former patient who had surgery | 1 (4.3%) | 0 (0%) | |
| My family and friends | 4 (17.4%) | 3 (33.3%) | |
| Myself | 3 (13.0%) | 5 (55.6%) |
Patients were allowed to choose multiple options; therefore, the column totals do not equal the total patients in each group. P value calculated with Fischer's exact test.