Measuring patient satisfaction following epilepsy surgery

Purpose: To systematically review primary research examining patient satisfaction with epilepsy surgery in order to obtain evidence‐based estimates of this surgical outcome; to assess methods used to measure epilepsy surgery satisfaction, overall epilepsy surgery satisfaction ratings, and predictors of epilepsy surgery satisfaction. Methods: Systematic review of published studies in English up to June 2009, focusing on patient satisfaction with all types of epilepsy surgery in patients of all ages. We excluded studies that focused on satisfaction with epilepsy treatment in general, on quality of life without specific exploration of patient satisfaction with surgery, and on satisfaction with the process of health care delivery, rather than with surgery and its outcomes. Key Findings: Eight studies met inclusion criteria. Satisfaction was assessed using one or more global questions. Four epilepsy surgery satisfaction question content patterns emerged: (1) satisfied or dissatisfied, (2) perceived success or failure, (3) overall positive or negative impact, and (4) willingness to repeat surgery or regretting surgery. Overall 71% were satisfied; 64% considered it a success; it had a positive effect for 78%; and 87% would repeat surgery. Seizure freedom was the most common predictor of epilepsy surgery satisfaction, whereas postoperative neurologic deficit predicted dissatisfaction. Significance: Patient satisfaction with interventions is an important aspect of patient‐centered care, but it has received little attention in epilepsy surgery. Future research is required to develop and validate epilepsy surgery satisfaction tools. We provide preliminary guiding principles for measuring satisfaction after epilepsy surgery.     

Impact of chronic pain on the spouse: marital, emotional and physical consequences

The effects of chronic illness on marital relationships and the spouses' emotional and physical health were examined in chronic pain patients, their spouses, and a control sample of spouses of diabetic patients. Results indicated that pain patients and their spouses experienced considerable change in marital and sexual satisfaction. Patients with better marital adjustment also reported higher overall pain levels and had more solicitous and maritally satisfied spouses. Spouses' marital adjustment was positively associated with patients' marital satisfaction and spouses' own mood. Spouses' dysphoric mood was related to patients' negative appraisal of the pain experience, spouses' perceived lack of life control, and spouses' marital dissatisfaction. Although spouses of chronic pain patients showed no more physical symptoms than spouses of diabetics, they reported significantly more pain symptoms that were related to elevated levels of depressed mood. The results indicate that not only is chronic pain associated with problems in the marital relationship but heightened distress and physical symptoms in spouses as well. These effects are related less to the existence of a chronic pain problem per se but rather to patients' and spouses' manner of coping with the situation.     

Self-Reported Sexual Function and Sexual Arousability in Women with Epilepsy

Summary: Purpose: Women with epilepsy are at risk for sexual dysfunction but the frequency and types of dysfunction have not been well characterized.
Methods: Self-reported sexual function was evaluated in 116 women aged 18-65 years with epilepsy and no concomitant medical or psychiatric illness, including 99 with localization-related epilepsy (LRE) and 17 with primary generalized epilepsy (PGE). Variables evaluated included seizure frequency, age of seizure onset, and antiepileptic drug (AED) exposure. Standardized inventories assessed sexual functioning, sexual arousability and anxiety, sexual behavior, and depression.
Results: Although sexual experience was not reduced, women with PGE and LRE reported significantly less sexual arousability and women with LRE reported significantly more sexual anxiety. Women with LRE experienced significantly more dyspareunia, vaginismus, arousal insufficiency, and sexual dissatisfaction, whereas women with PGE experienced an-orgasmia and sexual dissatisfaction. Sexual symptoms were not associated with seizure frequency, AED exposure, sexual experience, depression, or prepubertal seizure onset.
Conclusions: In contrast to subjects of previous research, the women in our study did not have a disorder of sexual desire, but more than one third experienced disorders of sexual arousal, implying a physiological deficit. Although the etiology for these arousal phase dysfunctions has not been defined, such conditions are treatable and warrant referral to a gynecologist versed in the treatment of sexual disorders.     

Surgical Versus Medical Treatment for Epilepsy. I. Outcome Related to Survival, Seizures, and Neurologic Deficit

We conducted a retrospective parallel longitudinal cohort study comparing surgical and medical treatment for epilepsy. The surgical group contained 201 patients treated with resective surgery for epilepsy in Norway since the first operation in 1949 until January 1988. The 185 control group patients treated medically only were closely matched for year of treatment, age at treatment, sex, seizure type, and neurologic deficit before treatment. There was no significant difference in survival between the two groups. The total monthly seizure frequency in the first and second year after operation and last year of registration (median 9 years) was significantly lower in the surgical group than in the control group (Mann-Whitney U test, two-tailed p less than 0.0001). The patterns were similar, with significant differences for subgroups with similar pretreatment status, such as seizure frequency, age, etiology and EEG-focality. Twenty-three and four-tenths percent (n = 40) of the surgically treated, and 2.9% of the controls had contracted neurologic deficits within 2 years after treatment. The difference was significant (chi square = 32.89, p less than 0.0001). Psychosis or permanent psychotic symptoms were reported in 6.7% (n = 11) of the surgically treated patients, and we suspect a higher proportion of psychotic development in the surgical group than in the control group. We conclude that surgical treatment for partial epilepsy is more successful than medical treatment in producing seizure reduction, provided the indications for operation exist. Surgical treatment produces more neurologic deficits than medical treatment (and possibly more psychiatric morbidity), and this factor must be weighed against the reduction in seizure frequency. The two treatments are equal for longterm survival.     

Extratemporal Cortical Resections and Lesionectomies for Partial Epilepsy: Complications of Surgical Treatment

Summary: Fifty patients with medically refractory extratemporal seizures underwent epilepsy surgery at our institution between 1988 and 1992. Twenty-nine patients (group 1) had an extratemporal (mainly frontal lobe) corticectomy, and 21 patients (group 11) had an epileptogenic lesion extirpated without resection of the epileptic brain tissue. Comprehensive neurologic evaluation was performed preoperatively, soon after operation, and ∼3 months postoperatively to assess operative outcome. Magnetic resonance imaging (MRI) in group I patients usually showed no abnormality or a large destructive lesion. Neuroimaging showed a foreign tissue lesion in most group II patients. Thirteen of the 29 patients who underwent corticectomy had at least one adverse event (AE) potentially related to operation at the time of initial assessment. Four of the 13 patients required a surgical procedure to treat the operative complication, but only 1 of the 13 patients had a persistent neurologic deficit at follow-up examination. Three of the 21 patients who received lesionectomy had acute and persistent neurologic morbidity. Patients undergoing cortical resection remained intubated longer postoperatively (p < 0·005), and required longer hospitalization after operation (p < 0·001) and in the intensive care unit (p < 0·001) as compared with the lesionectomy group. Results of this study may prove useful in counseling patients regarding neurologic outcome after extratemporal surgery.     

Management and Attitudes of Epilepsy by a Group of Sydney General Practitioners

Summary: Previous surveys of general practitioners (GPs) have shown stereotypic attitudes and management of persons with epilepsy (PWE). We mailed a questionnaire to 107 GPs in the Sydney and Illawarra regions of Australia to evaluate changes in knowledge and management of epilepsy and attitudes of GPs toward PWE as compared with results of a similar study made 10 years previously. Most GPs referred patients with epilepsy to a neurologist for initial management in preference to initiating investigation and treatment themselves. GPs were very satisfied with their sharing of care with neurologists, but indicated their high level of dissatisfaction with other health care therapists because of impractical advice and lack of empathy. The GPs' objectives of continuing management were mainly to prevent seizures, monitor of medication and its effects, and reduce the impact of patients' epilepsy on their daily life. Although many GPs believed that PWE were more likely to have emotional and relationship problems, most also believed that such persons contribute equally to society and can have normal quality of life (QOL). Although the GPs prefer to use a neurologist for initial management of PWE, they see themselves as having a role in continuing care and providing psychosocial support. The stereotyped perceptions of GPs indicated in the previous study have improved, although in some respects they remain negative. This study offers an audit of the outcome of a decade of educational promotion regarding epilepsy.     

Satisfaction with life domains in people with epilepsy

While commonly used quality-of-life instruments assess perceived epilepsy-associated limitations in life domains and formally document patient concerns, less is known of community-dwelling adults with epilepsy about their satisfaction with broader life domains, such as satisfaction with housing, education, neighborhood, ability to help others, and achievement of goals. The purpose of this study was to examine satisfaction with life domains in a representative sample of community-dwelling adults with self-reported epilepsy from the 2008 HealthStyles survey. Following adjustment for sex, age group, race/ethnicity, education, and income, people with epilepsy were more likely to report frustration in the domains of achievement (e.g., dissatisfaction with education and life goals), compromised social interactions (dissatisfaction with family life, friends, and social life), and compromised physical capability (dissatisfaction with health and energy level). Life satisfaction and other well-being domains can supplement health indicators to guide treatment and program services for people with epilepsy to maximize their well-being.     

Surgical Versus Medical Treatment for Epilepsy. II. Outcome Related to Social Areas

We conducted a retrospective parallel cohort study comparing surgical and medical treatment for epilepsy. The surgical group contained all 201 patients treated with resective surgery for epilepsy in Norway since the first operation in 1949 until January 1988. The 185 patients in the control group, medically treated only, were closely matched for year of treatment, age at treatment, sex, seizure type, and neurologic deficit before treatment. Between 75 and 95% of the survivors (median 17 years after treatment) completed two questionnaires on their social situation. Although surgical treatment improved the seizure situation (about one-fourth had some neurologic deficit), a considerably smaller long-range influence on different social aspects was observed. There were no significant differences between the two groups in educational status, social pensions, social status, marital status, fertility, dependency in residential situation, the need for aid in daily activities of living (ADL), or the need for being looked after, when we controlled for pretreatment status. In all, 25.3% of the surgically treated patients and 8.5% of the controls were not receiving anti-epileptic drugs (AEDs) at the time of investigation (Mann-Whitney U test, two-tailed p = 0.0011). A considerably higher proportion of the surgically treated (53.2%) than control patients (24.2%) claimed that the treatment had improved their "working ability" (Mann-Whitney U test, two-tailed p less than 0.0001), but this resulted in significant improvements in the actual working situation only for those in regular education or work before treatment (chi 2 = 6.514, p = 0.038).     

Multiple subpial transections: the Yale experience

PURPOSE: Although resection of an epileptogenic region is the mainstay of epilepsy surgery, epileptogenic areas in functionally critical cortex cannot be approached in that manner. Multiple subpial transection (MST) was developed to treat those refractory seizures without causing unacceptable neurologic deficit. We review our experience with this technique. METHODS: Twelve patients who underwent MST with or without resection between 1990 and 1998 were retrospectively reviewed with regard to seizure and neurologic outcome, and predictive factors. RESULTS: Five (42%) of 12 patients obtained a significant improvement in seizure frequency, and two other patients had a marked decrease in the severity of their seizures. Resection with MST reduced seizure frequency more, but this was not a significant difference. No predictive factors for outcome were identified. Only one patient sustained any persistent neurologic deficit. CONCLUSIONS: In selected patients, MST may be a viable alternative when the epileptogenic focus lies in unresectable cortex. A multicenter study with appreciable patient numbers will be necessary to define predictive factors for success.     

Body experience in eating disorders before and after treatment: a follow-up study.

Since body dissatisfaction is an essential part of anorexia/bulimia nervosa, we wanted to assess the patients' body experience before and after intensive treatment. Body experience was studied in 290 eating disorder patients, admitted to a specialised unit, after six months and again after one year using the Body Attitude Test (BAT), the Eating Disorder Inventory (EDI), and the Eating Disorder Evaluation Scale (EDES). The clearly negative body experience of eating disorder patients evolved in a positive way after therapy and this improvement lasted for up to one year after admission. EDI scores and Body Mass Index at the time of admission appeared to be the strongest predictors of the total BAT score at follow-up. Although body dissatisfaction can be quite persistent in eating disorders, intensive treatment can substantially improve the patients' body experience.