Use and specify a theoretical model or framework of patient satisfaction to guide the assessment of satisfaction with epilepsy surgery (e.g., a model from the general medical literature, or derived specifically for epilepsy surgery)
Define satisfaction specifically (e.g., satisfaction with epilepsy surgery can be broadly defined as the patient’s evaluation [whether positive or negative] of the entire process of undergoing epilepsy surgery and its associated outcomes)
Describe possible predictors of postsurgical satisfaction and if possible assess their impact on satisfaction. These include: Patient characteristics (e.g., age, age at surgery, gender)
Type of surgery (e.g., dominant hemisphere, temporal vs. extratemporal)
Seizure outcome: Presence or occurrence of risk factors (e.g., unrealistic expectations, postoperative neurological deficit, mood disorders), Protective factors (e.g., established plans for postsurgical adjustment; employment)
Include different dimensions of satisfaction, such as (1) how satisfied are you with surgery overall? (2) do you perceive surgery to be a success? (3) do you perceive surgery to be a failure? (4) was the overall impact of surgery positive? or whether questions such as “would you have surgery again in the same circumstances?” are appropriate given the research or clinical question
Establish a specific response format. Ideally, this will be a Likert scale with more than 3 but <10 response options, and provide the scale and wording of response options. If dichotomous analyses (e.g., Yes/No Satisfied/Not satisfied) are done based on responses with >2 response options or gradations, e.g., Likert-type responses), specify the cutoff used for determining what constitutes a negative and a positive response Assess satisfaction longitudinally (e.g., at repeated time points including after 24 months postsurgery)
In summary, there are few studies examining the child and parent subjective experience of epilepsy surgery (see Appendix for a summary of the studies discussed in this chapter). Seizure freedom is associated with a higher degree of patient satisfaction while ongoing postoperative neurological deficit and behavioral concerns are associated with lower satisfaction. The small number of studies on parent and child satisfaction with epilepsy surgery may reflect challenges with measuring this construct. Development of a validated tool for measuring child and parent experience and satisfaction after epilepsy surgery may facilitate the systematic evaluation of patient satisfaction as an additional component of its efficacy – an important aspect of collaborative models of patient-centered health care.
Appendix. Summary of Studies on Subjective Experience of Children and Parents After Epilepsy Surgery
Author, year | Study design | Participants (children) | Males | Age at surgery (min-max/y) | Duration of epilepsy (min-max/y) | Prognostic indicators studied | Intervention | Outcome measures | Good outcome (N) | Follow-up (min-max/mos) |
|---|---|---|---|---|---|---|---|---|---|---|
Engelhart, 2013 [6] | RE | 56 | 23 | 1–17 yr | NS | c,d,f, | T-EXT | O | 46 | 12–120 |
Hannan, 2009 [4] | PR | 13 | 4 | 5–17 yr | NS | c,d,f,g,i,k,l | T-EXTs | E | 11 | 90–102 |
Iwasaki, 2013 [3] | RE | 16 | NS | 1–24 yr | NS | I, m, x | EXT | E | 10 | 6–45 |
Keene1998 [5] | RE | 63 | 34 | NS | NS | c,d,g,i | T-EXT | O | 50 | 78–91 |
Park, 2013 [2] | RE | 48 | 27 | 1–16 yr
Related posts: Long-Term Cognitive Outcomes After Epilepsy Surgery in Children
Long-Term Psychiatric Outcomes After Epilepsy Surgery in Adults
Long-Term Educational and Vocational Outcomes of Adults After Epilepsy Surgery
Quality-of-Life Outcomes in Adults Following Epilepsy Surgery
Managing Expectations of Epilepsy Surgery
 Long-Term Seizure and Antiepileptic Drug Outcomes After Epilepsy Surgery in Adults
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