Leading up to saying "yes": A qualitative study on the experience of patients with refractory epilepsy regarding presurgical investigation for resective surgery

Abstract

Qualitative inquiry detailed multifaceted effects of information on patients' overall treatment trajectory and experience of healthcare. Earlier patient identification for surgical assessments should be accompanied by access to good quality information at primary and community care levels and strengthened referral processes.

Determinants of health and wellbeing in refractory epilepsy and surgery: The Patient Reported, ImpleMentation sciEnce (PRIME) model

“…Using refractory epilepsy as the exemplar case, we recognized eight primary conditions that were critical for this model, in line with our previous work [9,29,30]. As follows, the model should:…”

“…While patients' views and experiences guide all six levels, in the exemplar case, they are derived from a research program that triangulated experiential knowledge, with an audit of patients' medical records and epidemiological patient data [29]. The program (reported in detail elsewhere [29]) comprised the following: 1) an assessment of qualitative methods use in epilepsy research [19]; 2) epilepsy service use (including patient mortality, drug use, and emergency department admissions for 66,000 patients with epilepsy across NSW between 2011 and 2016) [32]; 3) patient and clinician characteristics for patients accessing two Tertiary Epilepsy Centers (TECs) in NSW in 2017; 4) patient and clinician interviews and observations (conducted between 2017 and 2018) [30,33]; 5) patient-completed Health-Related Qualityof-Life (HRQoL) surveys; and 6) an audit of medical records across two TECs for 50 patients who were accessing services in 2014 [29] .…”

“…In this research, while interviews and observations were ongoing, interview transcripts and observation notes were assessed systematically, through a combination of thematic and schema analyses [30,34]. These methods are reported in detail elsewhere [35], but in brief, involve consensus-building through analytic group work, around both a thematic framework and its key themes and categories.…”

“…The researcher concentrated on the variety of patient pathways to TEC referral and approaches to shared care, assessing how decisions were made and what information was processed. In epilepsy research, the subjective experience of patients often tends to be considered using quantitative measures that fall short in revealing nuanced experience and expression [41] while our qualitative work indicates that patients project complex thoughts about treatment options that quantitative tools simply cannot capture [30]. Level Four is the level where the gaps that exist in knowledge become apparent, particularly around: models of shared care delivery, approaches to shared decision-making, and boundary-crossing.…”

Promoting faster pathways to surgery: a clinical audit of patients with refractory epilepsy

“…The pathway to surgery involves referral to a surgical team, surgery, and post-operative visits, resulting in an extensive process of multiple medical assessments that can be stressful and can create both physical and mental strain for patients [21]. Consultation, testing and ongoing assessment have also led to concerns that patients are facing considerable delays before arriving at surgical intervention, and that some of these delays are resulting in surgery being abandoned [22, 23].…”