title: Common experiences of patients following suboptimal treatment outcomes: implications for epilepsy surgery.
abstract: Few studies have investigated the patient experience of unsuccessful medical interventions, particularly in the epilepsy surgery field. The present review aimed to gain insight into the patient experience of seizure recurrence after epilepsy surgery by examining the broader literature dealing with suboptimal results after medical interventions (including epilepsy surgery). To capture the patient experience, the literature search focused on qualitative research of patients who had undergone medically unsuccessful interventions, published in English in scholarly journals. Twenty-two studies were found of patients experiencing a range of suboptimal outcomes, including seizure recurrence, cancer recurrence and progression, unsuccessful joint replacement, unsuccessful infertility treatment, organ transplant rejection, coronary bypass graft surgery, and unsuccessful weight-loss surgery. In order of frequency, the most common patient experiences included the following: altered social dynamics and stigma, unmet expectations, negative emotions, use of coping strategies, hope and optimism, perceived failure of the treating team, psychiatric symptoms, and control issues. There is support in the epilepsy surgery literature that unmet expectations and psychiatric symptoms are key issues for patients with seizure recurrence, while other common patient experiences have been implied but not systematically examined. Several epilepsy surgery specific factors influence patient perceptions of seizure recurrence, including the nature of postoperative seizures, the presence of postoperative complications, and the need for increased postoperative medications. Knowledge of common patient experiences can assist in the delivery of patient follow-up and rehabilitation services tailored to differing outcomes after epilepsy surgery.
authors.affiliation: Melbourne School of Psychological Sciences, The University of Melbourne, Parkville 3010, Australia.
authors.forename: Dinusha K
authors.initials: DK
authors.lastname: Fernando
authors.affiliation: Melbourne Brain Centre, Department of Medicine, The Royal Melbourne Hospital, The University of Melbourne, Melbourne, Australia; Epilepsy Research Centre, Department of Medicine, Austin Health, The University of Melbourne, Australia; Department of Neurology, The Royal Melbourne Hospital, Melbourne, Australia; Department of Neurology, Austin Health, Melbourne, Australia.
authors.forename: Anne M
authors.initials: AM
authors.lastname: McIntosh
authors.affiliation: Comprehensive Epilepsy Program, Austin Health, Melbourne, Australia.
authors.forename: Peter F
authors.initials: PF
authors.lastname: Bladin
authors.affiliation: Melbourne School of Psychological Sciences, The University of Melbourne, Parkville 3010, Australia; Epilepsy Research Centre, Department of Medicine, Austin Health, The University of Melbourne, Australia; Comprehensive Epilepsy Program, Austin Health, Melbourne, Australia. Electronic address: sarahw@unimelb.edu.au.
authors.forename: Sarah J
authors.initials: SJ
authors.lastname: Wilson
mesh_terms: D000223:Adaptation, Psychological; D001921:Brain / Q000601:surgery*; D004827:Epilepsy / Q000523:psychology* / Q000601:surgery*; D006801:Humans; D011184:Postoperative Period; D017211:Treatment Failure
keywords: Epilepsy surgery; Psychological adjustment; Psychosocial outcome; Qualitative research; Surgical outcome; Unsuccessful medical interventions