Patient satisfaction with epilepsy surgery: what is important to patients

Abstract

Aims. Patient satisfaction with therapeutic interventions is an important outcome of care. Although generic measures of patient satisfaction exist, there is no validated scale for measuring patient satisfaction with epilepsy surgery. We aimed to systematically obtain patient-identified factors related to satisfaction with epilepsy surgery as a means of informing clinicians about the ways that patients evaluate outcomes of their treatment and as a conceptual basis for the future development of epilepsy surgery patient satisfaction scales. Methods. Focus group discussions with epilepsy surgery patients (n=9) were conducted to identify themes relevant to patient satisfaction with epilepsy surgery and to draft initial items of importance. Consensus methodology (Delphi technique) was used to obtain expert opinion (n=13) to refine the items. Member-checking with focus group participants was performed to ensure the identified items were relevant, clear, and inclusive. Results. A list of 31 items embodied 12 themes related to patient-reported satisfaction with epilepsy surgery. These included adverse effects, medical care or rehabilitation, seizure control, post-operative recovery, anti-seizure medication, independence, seizure worry, ability to drive, social relationships, self-confidence, improved cognitive function, and improved physical health. Conclusions. This study used a systematic approach to identify factors that are important to patients when assessing satisfaction with epilepsy surgery. This knowledge can assist clinicians caring for these patients and is also a critical step towards the validation of a formal scale to assess satisfaction with epilepsy surgery.

Development and validation of the Epilepsy Surgery Satisfaction Questionnaire (ESSQ‐19)

“…A detailed description of the conceptual framework and item generation methodology of the ESSQ‐19 is provided elsewhere 8 . In summary, following a systematic review of epilepsy surgery satisfaction literature, 7 we conducted an iterative process involving two focus groups of consenting adults (n = 9) who had undergone different types of epilepsy surgery.…”

“…All participants completed a battery of self‐administered questionnaires at baseline and the ESSQ‐31 twice, 4‐6 weeks apart. The battery included (1) the ESSQ‐31 8 ; (2) the EuroQOL five‐dimension five‐level health utility scale (EQ‐5D‐5L), 12 where higher scores indicate greater health state valuation; (3) the Patient Health Questionnaire (PHQ‐9), 13 a depression rating scale, where higher scores indicate a greater severity of depression; (4) the Marlowe‐Crowne Social Desirability Scale, Short Form C (MCSDS‐C), 14 where higher scores indicate a greater degree of social desirability; (5) the Treatment Satisfaction Questionnaire for Medication (TSQM‐II), 15 where higher scores indicate greater treatment satisfaction; (6) the Global Assessment of Severity of Epilepsy scale (GASE), 16 where lower scores indicate greater self‐perceived epilepsy severity; (7) the Global Assessment of Disability for Seizure Disorders scale (GADS), 17 where lower scores indicate greater self‐perceived epilepsy disability; and (8) the Patient‐Weighted Quality of Life in Epilepsy (QOLIE‐31‐P) 18 scale, where higher scores indicate a greater self‐perceived quality of life. In addition, demographic and clinical data were obtained for each participant, including age, education, marital status, employment status, year of epilepsy onset, seizure type and frequency, current antiepileptic drugs, date and type of surgery, and surgical complications.…”

“…A detailed description of the conceptual framework and item generation methodology of the ESSQ-19 is provided elsewhere. 8 In summary, following a systematic review of epilepsy surgery satisfaction literature, 7 we conducted an iterative process involving two focus groups of consenting adults (n = 9) who had undergone different types of epilepsy surgery. This yielded an initial 55-item questionnaire, comprising 12 domains relevant to patient satisfaction with epilepsy surgery, namely, adverse effects, medical care or rehabilitation, seizure control, postoperative recovery, antiseizure medication, independence, seizure worry, ability to drive, social relationships, self-confidence, improved cognitive function, and improved physical health.…”

“…Exploratory factor analysis (EFA) using varimax rotation with Kaiser normalization, and maximum likelihood extraction method was used to determine the number and type of factors from the 30 items of the ESSQ-31 (the item on global satisfaction with epilepsy surgery was not included). 8 EFA was performed on complete data for all 30 items at baseline. A factor solution from the EFA was obtained based on the magnitude of each item's factor loadings.…”

“…We have previously reported on a conceptual framework to assess patient-informed satisfaction with epilepsy surgery. 8 Using a systematic review of the literature, patient focus groups, and Delphi panel consensus of experts, we distilled a list of 31 items that adequately explored treatment satisfaction with epilepsy surgery. Here, we report on the derivation and validation of the 19-item Epilepsy Surgery Satisfaction Questionnaire (ESSQ-19).…”