Patients' expectations and experiences of epilepsy surgery—A population‐based long‐term qualitative study

Abstract

SUMMARYObjective: The aim of this prospective and population-based longitudinal study was to explore patients' expectations before surgery and their experiences both short and long term after epilepsy surgery. Methods: A national sample of adult patients answered open-ended questions preoperatively, 2 years after surgery and at a cross-sectional long-term follow-up (mean 13 years, standard deviation [SD] 1.85). The answers were analyzed by qualitative content analysis. Results: Eighty patients participated in the study. Before surgery, patients experienced a belief in a "normal" life; they hoped for reduction of seizures and medication, a richer social life, and more self-confidence. However, they also experienced anxiety of the unknown. They were afraid of the operation, of continued seizures, and of complications. At both postoperative follow-ups patients experienced increased independence. They had symptom reduction, felt relief from worries and fears, and felt that they had a new life. However, some patients experienced that the operation had changed their life to the worse due to both psychological and neurologic adverse effects, regardless of whether they had obtained seizure freedom or improvement. Significance: Positive experiences of epilepsy surgery dominated, both in the short and long term. However, attention must be paid to negative expectations before and negative experiences after surgery in order to provide individual support and information. This should increase the possibility for patients to have realistic hopes before surgery and to find coping strategies in the new life situation after surgery.

Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations

“…The timing of a return to driving is in part dictated by local medicolegal regulations; however, few patients delayed regaining their driver's license beyond 24 months. A recent qualitative study of the long-term outcomes of epilepsy surgery identified a similar process to that described by our cohort, 9 supporting an active reframing and reprioritization of ongoing progress postsurgery, in order to maintain psychosocial "equilibrium" as patients work toward achieving their social goals. 33 Pleasingly, the number of patients who had achieved driving (87%) and new employment outcomes (51%) exceeded estimates of patients who expected these outcomes in a previously published TLE cohort from Austin Health (45% and 35%, respectively).…”

“…[2][3][4] Research has identified a number of common expectations held by patients regarding their postsurgical outcomes. [7][8][9] Such expectations often reflect important social milestones that individuals may have felt impeded in attaining as a result of their epilepsy. [7][8][9] Such expectations often reflect important social milestones that individuals may have felt impeded in attaining as a result of their epilepsy.…”

Enhancing validity through cognitive interviewing. A methodological example using the Epilepsy Monitoring Unit Comfort Questionnaire

“…To enhance safety, restricted ambulation of patients, guard rails, specially designed bathrooms, specific nursing, and technician support and standardized operating procedures for the treatment of status epilepticus are compulsory in many EMUs (Dobesberger et al, 2017;Kobulashvili et al, 2016;Rosenow et al, 2016;Spanaki et al, 2012;Spritzer et al, 2015). Former research findings indicate that EMU patients are tense and feel anxious, bored, depressive and less than clean (Andrewes, Camp, Kilpatrick, & Cook, 1999;Bristol, Natarajan, Lin, & Malow, 2001;Egger-Rainer, Trinka, Höfler, & Dieplinger, 2017;Ozanne, Graneheim, Ekstedt, & Malmgren, 2016). Enhancing patient comfort is an essential outcome of nursing (Kolcaba, 1992) in this setting.…”

Indications and expectations for neuropsychological assessment in epilepsy surgery in children and adults

“…For example, unrealistic expectations, such as expecting surgery to make you more clever or skilful at work, have been found to negatively impact post-surgical HRQOL, whereas patients with more achievable expectations are more likely to consider surgery a success (Baxendale and Thompson, 1996;Wilson et al, 1999). For both adults and parents of children who undergo epilepsy surgery, dissatisfaction is consistently related to psychiatric, behavioural or neurological complications of the surgery (Keene et al, 1998;Sajobi et al, 2014;Ozanne et al, 2016). This provides clear red flags for clinicians to consider when working with patients having surgery.…”