Information from the Internet and the doctor-patient relationship: the patient perspective – a qualitative study

Background: Both doctors and patients may perceive the Internet as a potential challenge to existing therapeutic relationships. Here we examine patients' views of the effect of the Internet on their relationship with doctors.Methods: We ran 8 disease specific focus groups of between 2 and 8 respondents comprising adult patients with diabetes mellitus, ischaemic heart disease or hepatitis C.Results: Data are presented on (i) the perceived benefits and (ii) limitations of the Internet in the context of the doctor-patient relationship, (iii) views on sharing information with doctors, and (iv) the potential of the Internet for the future. Information from the Internet was particularly valued in relation to experiential knowledge.Conclusion: Despite evidence of increasing patient activism in seeking information and the potential to challenge the position of the doctor, the accounts here do not in any way suggest a desire to disrupt the existing balance of power, or roles, in the consultation. Patients appear to see the Internet as an additional resource to support existing and valued relationships with their doctors. Doctors therefore need not feel challenged or threatened when patients bring health information from the Internet to a consultation, rather they should see it as an attempt on the part of the patient to work with the doctor and respond positively

Developing a utility index for the Aberrant Behavior Checklist (ABC-C) for fragile X syndrome

Purpose This study aimed to develop a utility index (the ABC-UI) from the Aberrant Behavior Checklist-Community (ABC-C), for use in quantifying the benefit of emerging treatments for fragile X syndrome (FXS). Methods The ABC-C is a proxy-completed assessment of behaviour and is a widely used measure in FXS. A subset of ABC-C items across seven dimensions was identified to include in health state descriptions. This item reduction process was based on item performance, factor analysis and Rasch analysis performed on an observational study dataset, and consultation with five clinical experts and a methodological expert. Dimensions were combined into health states using an orthogonal design and valued using time trade-off (TTO), with lead-time TTO methods used where TTO indicated a state valued as worse than dead. Preference weights were estimated using mean, individual level, ordinary least squares and random-effects maximum likelihood estimation [RE (MLE)] regression models. Results A representative sample of the UK general public (n = 349; mean age 35.8 years, 58.2 % female) each valued 12 health states. Mean observed values ranged from 0.92 to 0.16 for best to worst health states. The RE (MLE) model performed best based on number of significant coefficients and mean absolute error of 0.018. Mean utilities predicted by the model covered a similar range to that observed. Conclusions The ABC-UI estimates a wide range of utilities from patient-level FXS ABC-C data, allowing estimation of FXS health-related quality of life impact for economic evaluation from an established FXS clinical trial instrument

Incidence of suicidality in people with depression over a 10-year period treated by a large UK mental health service provider

We describe the incidence of suicidality (2007–2017) in people with depression treated by secondary mental healthcare services at South London and Maudsley NHS Trust (n = 26 412). We estimated yearly incidence of ‘suicidal ideation’ and ‘high risk of suicide’ from structured and free-text fields of the Clinical Record Interactive Search system. The incidence of suicidal ideation increased from 0.6 (2007) to 1 cases (2017) per 1000 population. The incidence of high risk of suicide, based on risk forms, varied between 0.06 and 0.50 cases per 1000 adult population (2008–2017). Electronic health records provide the opportunity to examine suicidality on a large scale, but the impact of service-related changes in the use of structured risk assessment should be considered

Patient Reported Outcome (PRO) assessment in epilepsy:A review of epilepsy-specific PROs according to the Food and Drug Administration (FDA) regulatory requirements

Despite collection of patient reported outcome (PRO) data in clinical trials of antiepileptic drugs (AEDs), PRO results are not being routinely reported on European Medicines Agency (EMA) and Food and Drug Administration (FDA) product labels. This review aimed to evaluate epilepsy-specific PRO instruments against FDA regulatory standards for supporting label claims. Structured literature searches were conducted in Embase and Medline databases to identify epilepsy-specific PRO instruments. Only instruments that could potentially be impacted by pharmacological treatment, were completed by adults and had evidence of some validation work were selected for review. A total of 26 PROs were reviewed based on criteria developed from the FDA regulatory standards. The ability to meet these criteria was classified as either full, partial or no evidence, whereby partial reflected some evidence but not enough to comprehensively address the FDA regulatory standards. Most instruments provided partial evidence of content validity. Input from clinicians and literature was common although few involved patients in both item generation and cognitive debriefing. Construct validity was predominantly compromised by no evidence of a-priori hypotheses of expected relationships. Evidence for test-retest reliability and internal consistency was available for most PROs although few included complete results regarding all subscales and some failed to reach recommended thresholds. The ability to detect change and interpretation of change were not investigated in most instruments and no PROs had published evidence of a conceptual framework. The study concludes that none of the 26 have the full evidence required by the FDA to support a label claim, and all require further research to support their use as an endpoint. The Subjective Handicap of Epilepsy (SHE) and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) have the fewest gaps that would need to be addressed through additional research prior to any FDA regulatory submission, although the NDDI-E was designed as a screening tool and is therefore unlikely to be suitable as an instrument for capturing change in a clinical trial and the SHE lacks the conceptual focus on signs and symptoms favoured by the FDA