Outliers from national audits: their analysis and use by the Care Quality Commission in quality assurance and regulation of healthcare services in England.

The Care Quality Commission (CQC) is the independent regulator of health and adult social care in England. As part of the intelligence-driven approach to regulation, the CQC works closely with national clinical audit bodies to identify key metrics which reflect quality of care and track the performance of providers against these metrics. Where outliers on national audits are identified that may reflect risks to patients, the CQC encourages the hospital to identify any learning points and implement changes to improve patient care.In this article, we describe the role of national audit outcomes in the regulatory process and how providers can use national audits to inform both quality assurance and quality improvement processes, with two illustrative case studies. We discuss the ongoing challenges with using audit data in the regulatory process and how these could be addressed.

Health related quality of life of people with non-epileptic seizures: The role of socio-demographic characteristics and stigma.

PURPOSE: People with non-epileptic seizures (NES) consistently report poorer Health-Related Quality of Life (HRQoL) than people with epilepsy. Yet, unlike in epilepsy, knowledge of how social factors influence the HRQoL of adults with NES is limited. To add to the evidence base, this study explores the relationship between HRQoL and perceived stigma among adults with NES, and the role of socio-demographic characteristics. METHODS: Data was gathered from a survey of 115 people living with the condition, recruited from online support groups. Participants provided socio-demographic and health-related data and completed a series of questions investigating their HRQoL (QOLIE-31) and stigma perceptions (10-item Epilepsy Stigma Scale). RESULTS: Participants were found to experience high levels of perceived stigma (median 5.2, mean 4.9). A significant and moderate inverse correlation was observed between HRQoL and stigma (rs - 0.474, p = < 0.001); suggesting higher perceptions of stigma contribute to poorer HRQoL among adults with NES. Stigma perceptions were found to be most strongly associated with the seizure worry (rs = - 0.479), emotional wellbeing (rs = - 0.421), and social functioning (rs = 0.407) HRQoL domains. Participants who reported being in employment or education were found to have significantly better HRQoL than those who were not (p = < 0.001). CONCLUSION: More (qualitative and quantitative) research is justified to understand how - and why - those with the condition experience stigmatisation, and the factors that impede and help facilitate the participation of people with NES in education and employment.

" Blaming, shaming, humiliation": Stigmatising medical interactions among people with non-epileptic seizures.

Background: People with non-epileptic seizures (NES) describe challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience difficult healthcare encounters. Methods: Using a thematic discourse analysis approach, we analysed the free-text survey responses of 135 people with NES and asked: what kind of challenges do people living with this condition encounter when interacting with health professionals, and how do they experience the consequences of difficult interactions? We explore their experiences by interpreting the latent meaning of participants' texts from a social-constructionist perspective on health and illness. Results: The overarching narrative depicts a fundamental breakdown in patient-provider relationships. According to our data, the negative experiences of study participants emerge from more than practitioners' lack of awareness of NES and access to information about the condition - to the extent that it is available. In examining the challenges people with NES encounter when interacting with health professionals, their main experiences centre on blame and humiliation. When exploring their experiences, theories of stigma serve as a useful theoretical framework. Conclusions: Normative judgements arising from psychogenic understandings of NES are stigmatising and restrict professional displays of respectful (patient-centred) care. Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals. Perceived to lack medical, moral and credible status, participants describe practitioners who treat them with disrespect, and some recount conduct that defies all ethical and professional obligations and standards. These encounters can have wide-ranging adverse consequences for patients: emotionally, physically, and for their future healthcare. The quality of healthcare interactions for people with NES requires urgent improvements. In addition to increased awareness of the condition, practitioners need to be conscious of making and acting on adverse moral appraisals when interacting with this patient group.

"It´s incredible how much I´ve had to fight." Negotiating medical uncertainty in clinical encounters.

PURPOSE: Clinical encounters related to medically unexplained physical symptoms (MUPS) are associated with high levels of conflict between patients and doctors. Collaborative difficulties are fused by the medical uncertainty that dominates these consultations. The main aim of this study is to explore the interactional dynamics of clinical encounters riddled by medical uncertainty, as experienced by people living with long-term medically unexplained fatigue in Norway. METHOD: A qualitative thematic analysis of written texts from 256 study participants. RESULTS: We found that patients experience being met with disbelief, inappropriate psychological explanations, marginalisation of experiences, disrespectful treatment, lack of physical examination and damaging health advice. The main source of their discontent is not the lack of biomedical knowledge, but doctors who fail to communicate acknowledgement of patients' experiences, knowledge and autonomy. War metaphors are emblematic of how participants describe their medical encounters. The overarching storyline depicts experiences of being caught in a power struggle with doctors and health systems, fused by a lack of common conceptual ground. CONCLUSION: When physical symptoms cannot be detected, explained and managed by biomedical knowledge and technology, good doctor-patient partnerships are crucial. Without clearly acknowledging patients' perspectives and capabilities in clinical practice, such partnerships cannot be achieved.

The role of companions in outpatient seizure clinic interactions: A pilot study.

PURPOSE: This study explored contributions that patients' companions (seizure witnesses) make to interactions in the seizure clinic and whether the nature of the companions' interactional contributions can help with the differentiation of epilepsy and psychogenic nonepileptic seizures (PNES). METHODS: Conversation analysis methods were used to examine video recordings and transcripts of neurologists' interactions with patients referred to a specialist seizure clinic and their companions. RESULTS: The companions' behavior correlated with interactional features previously observed to distinguish patients with epilepsy from patients with PNES. Patients with PNES, but not those with epilepsy, tended to exhibit interactional resistance to the doctor's efforts to find out more about their seizure experiences and, thereby, encouraged greater interactional contribution from companions. CONCLUSION: The contributions that companions make (in part, prompted by patient's interactional behavior) may provide additional diagnostic pointers in this clinical setting, and a number of candidate features that may help clinicians distinguish between epilepsy and PNES when the patient is accompanied by a seizure witness are described. However, companion contributions may limit the doctor's ability to identify linguistic and interactional features with previously demonstrated diagnostic potential in the conversational contributions made by patients themselves. To help offset potential diagnostic losses, doctors may need to explicitly discuss the role of the companion in the consultation when a seizure witness (or another companion) accompanies the patient.

Duration and structure of unaccompanied (dyadic) and accompanied (triadic) initial outpatient consultations in a specialist seizure clinic.

This study explores differences in the duration and structure of unaccompanied (dyadic) and accompanied (triadic) initial (diagnostic) outpatient consultations in a specialist seizure clinic. This is the first known study to explore this topic quantitatively by analyzing the discourse space taken up by the different participants in real clinical encounters. We did not observe significant differences between the duration of accompanied and unaccompanied interactions (p=0.589). Results suggest that patients occupy proportionally less discourse space (measured by the number of words produced) in accompanied interactions than in unaccompanied interactions (56.9% versus 28.3%, p ≤ 0.0001). In accompanied interactions, there is a weak negative correlation between the discourse space of patients and that of doctors (rs=-0.43, p=0.017) and a moderate to strong negative correlation with the discourse spaces of companions (rs=-0.64, p=0.001). These findings indicate that the presence of a companion may reduce opportunities for doctors to observe the interactional, linguistic, and topical features of seizure patient talk, whose differential diagnostic value has been described in a number of previous publications, or for patients to raise issues they want to talk about.

Catastrophising and normalising in patient's accounts of their seizure experiences.

PURPOSE: To extend our previous research demonstrating that linguistic/interactional features in patients' talk can assist the challenging differential diagnosis of epilepsy and psychogenic nonepileptic seizures (PNES) by exploring the differential diagnostic potential of references to non co-present persons (third parties). METHOD: Initial encounters were recorded between 20 seizure patients (13 with PNES, seven with epilepsy) who were subsequently diagnosed by the recording of typical seizures with video-EEG. An analyst blinded to the medical diagnoses coded and analysed transcripts. RESULTS: There were no significant differences between the two diagnostic groups in terms of the total number of third party references or references made spontaneously by patients without prompting from the doctor. However, patients with PNES made significantly more prompted references to third parties (p=0.022). 'Castrophising' third party references were made in 12/13 (92.3%) of encounters with PNES patients and 1/7 (14.3%) of encounters with epilepsy patients (p=0.001, OR 72, 95% CI=3.8-1361.9). Normalising references were identified in 2/13 (15.4%) of encounters in the PNES and 6/7 (85.7%) of encounters in the epilepsy groups (p=0.004, OR 33, 95% CI=2.5-443.6). CONCLUSION: There are significant differences in how patients with epilepsy or patients with PNES refer to third parties. Patients with PNES are more likely to be prompted to tell doctors what others have told them about their seizures. Patients using third party references to catastrophise their seizure experiences are more likely to have PNES, whilst patients who use third party references to normalise their life with seizures are more likely to have epilepsy.

Detecting vigabatrin toxicity by imaging of the retinal nerve fiber layer.

PURPOSE: To quantify retinal nerve fiber layer thickness (RNFLT) and macular thickness (MT) in patients exhibiting vigabatrin-attributed visual field loss (VAVFL) and to determine the efficacy of these measures as markers of the retinal damage associated with vigabatrin. METHODS: This was a prospective cross-sectional observational study involving five groups: Group I, 13 patients exhibiting VAVFL; Group II, 8 patients exposed to vigabatrin but with normal fields; Group III, 14 patients receiving carbamazepine monotherapy; Group IV, 20 normal individuals; and Group V, 7 patients receiving sodium valproate monotherapy. At one of two visits, the right eye of each participant underwent two digital imaging modalities: ocular coherence tomography (OCT; StratusOCT; Carl Zeiss Meditec, Dublin, CA) and scanning laser ophthalmoscopy (SLO; Heidelberg Retinal Tomograph; Heidelberg Engineering GmbH, Heidelberg, Germany). At the other visit, participants underwent three-zone, age-corrected suprathreshold perimetry of the whole field and threshold perimetry of the central field (Humphrey Field Analyzer 750; Carl Zeiss Meditec). The order of the visits was randomized. RESULTS: The group mean RNFLT in Group I was attenuated relative to that of the remaining groups (all P < 0.001). At 100% specificity, based on the 95% confidence limits derived from Group IV, OCT exhibited 100% sensitivity and SLO 77% sensitivity for an attenuated RNFLT in patients with VAVFL. All participants manifested an MT within the normal range derived from Group IV. CONCLUSIONS: OCT of the RNFL can efficiently identify vigabatrin-induced damage and will be useful for adults and children unable to perform perimetry and when the perimetric outcome is equivocal.