Subjective Experiences of Epilepsy Surgery in Adults

Malmgren, Kristina; Ozanne, Anneli; Wilson, Sarah J.

doi:10.1007/978-3-319-17783-0_14

Cited by 3 publications

(6 citation statements)

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“…In addition to outcomes concerning seizures, complications, and cognition, other outcomes are often assessed short term after surgery (1–2 years): psychosocial outcomes, quality of life (QoL), and mood . However, the literature on patients' subjective experiences of epilepsy surgery using interview studies and focus groups is limited …”

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confidence: 99%

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

et al. 2016

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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.

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confidence: 99%

“…There are no long‐term qualitative studies of patients' positive and negative experiences after epilepsy surgery . The aim of this study was therefore to explore a national sample of expectations of epilepsy surgery candidates before surgery as well as their experiences 2 years after epilepsy surgery and at long‐term follow‐up after surgery.…”

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

et al. 2016

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“…Consideration of an individual's psychosocial status following surgery therefore has the potential to not only improve the patient's quality of life and well‐being but also to reduce the rates of psychiatric readmission to hospital post‐surgery. A comprehensive assessment should include consideration of depression, anxiety, illness beliefs and coping strategies, quality of life, and daily psychosocial functioning as well as screening for any other psychiatric disorders or behavioural comorbidities (Wilson et al ., 2015).…”

Section: Evaluating Psychosocial Outcomesmentioning

confidence: 99%

“…A comprehensive neuropsychological assessment provides a baseline against which changes in postoperative function can be identified and expectations of postoperative change can be managed. The pre‐surgical assessment should therefore include assessment of function in the core domains of cognition using standardized tests, taking into account all of the considerations set out in our previous guidelines (Wilson et al ., 2015). In the surgical setting, in addition to formal neuropsychological test scores, behavioural measures of cognitive function are useful, together with subjective ratings of the patients' difficulties in each cognitive domain.…”

Section: Baseline Assessment For Outcome Comparisonmentioning

confidence: 99%

“…To date, there has been a relative lack of work examining the patiente and family experience of epilepsy surgery, particularly over the long term (Malmgren et al ., 2015). Unsurprisingly, seizure outcome has been found to make the largest independent contribution to a patient's satisfaction with surgery, however, pre‐operative expectations and post‐operative mood have also been identified as making additional and unique contributions (Wilson et al ., 1999).…”

Section: Behavioural Mood and Adjustment Difficulties Following Surgerymentioning

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

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Wilson

Baker

et al. 2019

Epileptic Disorders

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In our first paper in this series ( Epilepsia 2015; 56(5): 674–681), we published recommendations for the indications and expectations for neuropsychological assessment in routine epilepsy care. This partner paper provides a comprehensive overview of the more specialist role of neuropsychological assessment in the pre and postoperative evaluation of epilepsy surgery patients. The paper is in two parts. The first part presents the framework for the mandatory role of neuropsychologists in the presurgical evaluation of epilepsy surgery candidates. A preoperative neuropsychological assessment should be comprised of standardised measures of cognitive function in addition to wider measures of behavioural and psychosocial function. The results from the presurgical assessment are used to: (1) establish a baseline against which change can be measured following surgery; (2) provide a collaborative contribution to seizure characterization, lateralization and localization; (3) provide evidence‐based predictions of cognitive risk associated with the proposed surgery; and (4) provide the evidence base for comprehensive preoperative counselling, including exploration of patient expectations of surgical treatment. The second part examines the critical role of the neuropsychologist in the evaluation of postoperative outcomes. Neuropsychological changes following surgery are dynamic and a comprehensive, long‐term assessment of these changes following surgery should form an integral part of the postoperative follow‐up. The special considerations with respect to pre and postoperative assessment when working with paediatric populations and those with an intellectual disability are also discussed. The paper provides a summary checklist for neuropsychological involvement throughout the epilepsy surgery process, based on the recommendations discussed.

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

2019

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Objective Patients often undertake epilepsy surgery with the expectation that it will lead to improvements in their social situation. Short‐ to medium‐term research consistently points toward improvements in social outcomes; however, no study has mapped out postsurgical social timelines, particularly for longer‐term (>15 years) outcomes. Methods We recruited 39 patients who had undergone anterior temporal lobectomy (ATL) for drug‐resistant temporal lobe epilepsy (TLE) between 1994 and 2002. The cohort (24 females) had a median age of 49 years (range 38‐67), age of habitual seizure onset was 9.5 years (range 0.5‐29 years), and age at surgery was 31 years (range 20‐53). Patients were followed up for a median of 18.4 years postsurgery (IQR = 4.4). Using data obtained from semistructured interviews, we conducted a comprehensive qualitative analysis of patients' self‐reported postsurgical social trajectories. Self‐report questionnaires were used to assess mood and health‐related quality of life (HRQOL) at the time of interview. Results There was a common sequence of social milestone achievement, spanning 20 years postsurgery. Typically, patients first (re)gained their license, then attempted educational and vocational gains, followed by establishing long‐term relationships and finally a family unit. Rare, intermittent seizures postsurgery did not appear to have detrimental effects on social trajectories. Those who experienced a reduction in seizures showed increased likelihood of attaining social milestones compared to those with ongoing seizures. Significance Achieving social milestones after epilepsy surgery may take considerably longer than patients are expecting prior to surgery. The pattern of social milestone outcome resembled a process of psychosocial development. These findings have important implications for presurgical counseling and postsurgical rehabilitation.

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Subjective Experiences of Epilepsy Surgery in Adults

Cited by 3 publications

References 30 publications

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

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

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

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

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