Impaired self awareness after traumatic brain injury: inter-rater reliability and factor structure of the dysexecutive questionnairre (DEX) in patients, significant others and clinicians

Aims: This study sought to address two questions: (1) what is the inter-rater reliability of the Dysexecutive Questionnaire (DEX) when completed by patients, their significant others, and clinicians; and (2) does the factor structure of the DEX vary for these three groups? Methods: We obtained DEX ratings for 113 patients with an acquired brain injury from two brain injury services in the UK and two services in Ireland. We gathered data from two groups of raters—”significant others” (DEX-SO) such as partners and close family members and “clinicians” (DEX-C), who were psychologists or rehabilitation physicians working closely with the patient and who were able to provide an opinion about the patient’s level of everyday executive functioning. Intra-class correlation coefficients and their 95% confidence intervals were calculated between each of the three groups (self, significant other, clinician). Principal axis factor (PAF) analyses were also conducted for each of the three groups. Results: The factor analysis revealed a consistent one-factor model for each of the three groups of raters. However, the inter-rater reliability analyses showed a low level of agreement between the self-ratings and the ratings of the two groups of independent raters. We also found low agreement between the significant others and the clinicians. Conclusion: Although there was a consistent finding of a single factor solution for each of the three groups, the low level of agreement between significant others and clinicians raises a question about the reliability of the DEX.</p

Impaired self awareness after traumatic brain injury: inter-rater reliability and factor structure of the dysexecutive questionnairre (DEX) in patients, significant others and clinicians

Aims: This study sought to address two questions: (1) what is the inter-rater reliability of the Dysexecutive Questionnaire (DEX) when completed by patients, their significant others, and clinicians; and (2) does the factor structure of the DEX vary for these three groups? Methods: We obtained DEX ratings for 113 patients with an acquired brain injury from two brain injury services in the UK and two services in Ireland. We gathered data from two groups of raters—”significant others” (DEX-SO) such as partners and close family members and “clinicians” (DEX-C), who were psychologists or rehabilitation physicians working closely with the patient and who were able to provide an opinion about the patient’s level of everyday executive functioning. Intra-class correlation coefficients and their 95% confidence intervals were calculated between each of the three groups (self, significant other, clinician). Principal axis factor (PAF) analyses were also conducted for each of the three groups. Results: The factor analysis revealed a consistent one-factor model for each of the three groups of raters. However, the inter-rater reliability analyses showed a low level of agreement between the self-ratings and the ratings of the two groups of independent raters. We also found low agreement between the significant others and the clinicians. Conclusion: Although there was a consistent finding of a single factor solution for each of the three groups, the low level of agreement between significant others and clinicians raises a question about the reliability of the DEX.</p

BMC Med

BACKGROUND: Overall survival (OS) is the gold standard endpoint to assess treatment efficacy in cancer clinical trials. In metastatic breast cancer (mBC), progression-free survival (PFS) is commonly used as an intermediate endpoint. Evidence remains scarce regarding the degree of association between PFS and OS. Our study aimed to describe the individual-level association between real-world PFS (rwPFS) and OS according to first-line treatment in female patients with mBC managed in real-world setting for each BC subtype (defined by status for both hormone-receptor [HR] expression and HER2 protein expression/gene amplification). METHODS: We extracted data from the ESME mBC database (NCT03275311) which gathers deidentified data from consecutive patients managed in 18 French Comprehensive Cancer Centers. Adult women diagnosed with mBC between 2008 and 2017 were included. Endpoints (PFS, OS) were described using the Kaplan-Meier method. Individual-level associations between rwPFS and OS were estimated using the Spearman's correlation coefficient. Analyses were conducted by tumor subtype. RESULTS: 20,033 women were eligible. Median age was 60.0 years. Median follow-up duration was 62.3 months. Median rwPFS ranged from 6.0 months (95% CI 5.8-6.2) for HR-/HER2 - subtype to 13.3 months (36% CI 12.7-14.3) for HR + /HER2 + subtype. Correlation coefficients were highly variable across subtypes and first-line (L1) treatments. Among patients with HR - /HER2 - mBC, correlation coefficients ranged from 0.73 to 0.81, suggesting a strong rwPFS/OS association. For HR + /HER2 + mBC patients, the individual-level associations were weak to strong with coefficients ranging from 0.33 to 0.43 for monotherapy and from 0.67 to 0.78 for combined therapies. CONCLUSIONS: Our study provides comprehensive information on individual-level association between rwPFS and OS for L1 treatments in mBC women managed in real-life practice. Our results could be used as a basis for future research dedicated to surrogate endpoint candidates

BMJ Open

PURPOSE: The currently ongoing Epidemiological Strategy and Medical Economics (ESME) research programme aims at centralising real-life data on oncology care for epidemiological research purposes. We draw on results from the metastatic breast cancer (MBC) cohort to illustrate the methodology used for data collection in the ESME research programme. PARTICIPANTS: All consecutive >/=18 years patients with MBC treatment initiated between 2008 and 2014 in one of the 18 French Comprehensive Cancer Centres were selected. Diagnostic, therapeutic and follow-up data (demographics, primary tumour, metastatic disease, treatment patterns and vital status) were collected through the course of the disease. Data collection is updated annually. FINDING TO DATE: With a recruitment target of 30 000 patients with MBC by 2019, we currently screened a total of 45 329 patients, and >16 700 patients with a metastatic disease treatment initiated after 2008 have been selected. 20.7% of patients had an hormone receptor (HR)-negative MBC, 73.7% had a HER2-negative MBC and 13.9% were classified as triple-negative BC (ie, HER2 and HR status both negative). Median follow-up duration from MBC diagnosis was 48.55 months for the whole cohort. FUTURE PLANS: These real-world data will help standardise the management of MBC and improve patient care. A dozen of ancillary research projects have been conducted and some of them are already accepted for publication or ready to be issued. The ESME research programme is expanding to ovarian cancer and advanced/metastatic lung cancer. Our ultimate goal is to achieve a continuous link to the data of the cohort to the French national Health Data System for centralising data on healthcare reimbursement (drugs, medical procedures), inpatient/outpatient stays and visits in primary/secondary care settings. TRIAL REGISTRATION NUMBER: NCT03275311; Pre-results

ECMO for COVID-19 patients in Europe and Israel

Since March 15th, 2020, 177 centres from Europe and Israel have joined the study, routinely reporting on the ECMO support they provide to COVID-19 patients. The mean annual number of cases treated with ECMO in the participating centres before the pandemic (2019) was 55. The number of COVID-19 patients has increased rapidly each week reaching 1531 treated patients as of September 14th. The greatest number of cases has been reported from France (n = 385), UK (n = 193), Germany (n = 176), Spain (n = 166), and Italy (n = 136) .The mean age of treated patients was 52.6 years (range 16–80), 79% were male. The ECMO configuration used was VV in 91% of cases, VA in 5% and other in 4%. The mean PaO2 before ECMO implantation was 65 mmHg. The mean duration of ECMO support thus far has been 18 days and the mean ICU length of stay of these patients was 33 days. As of the 14th September, overall 841 patients have been weaned from ECMO support, 601 died during ECMO support, 71 died after withdrawal of ECMO, 79 are still receiving ECMO support and for 10 patients status n.a. . Our preliminary data suggest that patients placed on ECMO with severe refractory respiratory or cardiac failure secondary to COVID-19 have a reasonable (55%) chance of survival. Further extensive data analysis is expected to provide invaluable information on the demographics, severity of illness, indications and different ECMO management strategies in these patients

The characteristics and motivations of attenders at a Dublin Drug Centre.

Since 1979, the use of illicit drugs has been a serious problem in Dublin. It has been estimated that there are between 3,000 and 15,000 illicit drug-users in Dublin but only 1,400 approximately, attend the drug-related agencies per year. Injecting heroin is the preferred drug and method of use among drug-users in Dublin, consequently the prevalence of HIV in Ireland is highest among this group. The objective of this study was to identify the reasons for first and continued contact at one drug-related agency in Dublin, the Ana Liffey Project. The respondents were also asked their ideas that would improve the service provided by the agency studied. A total of 50 attenders with a history of illicit drug use were interviewed. Data collection was by means of a semi-structured questionnaire administered by the researcher. The major findings of this study were that the drug-users in the sample studied were aged between 20 and 25 years, unemployed and living in local authority accommodation. They had been or were multiple drug-users and 88% of those sampled had or were currently intravenously injecting heroin. For most, the first agency they contacted was the Drug Advisory and Treatment Centre. 52% were 7 or more years using drugs before they made contact with the Ana Liffey Project. Reasons for first contact were usually because respondents had reached a critically low point in their drug habit. Reasons for continuing to attend this agency were because of satisfaction with the counselling service and because the agency was somewhere to go and 'drop-in'. Ideas for improvement of the agency studied included expanding the service especially with more activities. It is recommended that in the evaluation and development of existing drug-related agencies there should be greater cognisance of the variety of needs of attenders. Further research should focus on studying the characteristics and motivations of those illicit drug-users who do not attend the drug-related agencies

Non Epileptic Seizures Patient Perceptions of The Diagnosis and Factors Associated With Prognosis.

There is very little information available on the effects of surgery on the psychological wellbeing of children who have undergone surgery for uncontrolled epilepsy and their families. The evaluation of epilepsy surgery should include seizure reduction as well as psychological and family variables. The objective of this study was to provide a comprehensive assessment of the children in Ireland who have undergone temporal lobectomy for the relief of intractable temporal lobe epilepsy and their families; together with an assessment of perceived behaviour change, retrospectively rated by the childrens' parents before and following surgery. The assessment evaluated intellectual functioning, behaviour problems, self-esteem, locus of control, family functioning and seizure status. The 20 participants in the study comprised 10 children who had undergone surgery for epilepsy and a comparison group of 10 children who were potential candidates for surgery. The main findings of the study showed that 50% of the children in the surgery group experienced a significant reduction in seizures and these children showed the most improved intellectual and psychological adjustment. A comparison of pre and post operative IQs showed that those who were rendered seizure-free showed no significant deterioration in intellectual functioning unlike those who continued to experience seizures. The two groups showed good personal adjustment on self-esteem and locus of control. Parents current and retrospective behaviour ratings of the children in the surgery-group reported an improvement in behaviour but they still reported clinically significant problems with hyperactivity . The two groups of parents demonstrated good family adjustment which may account for the good overall psychological adjustment of their children. Further research is required is explore more fully the variables that contribute to psychlogical adjustment following surgery for epilepsy

Non Epileptic Seizures Patient Perceptions of The Diagnosis and Factors Associated With Prognosis.

There is very little information available on the effects of surgery on the psychological wellbeing of children who have undergone surgery for uncontrolled epilepsy and their families. The evaluation of epilepsy surgery should include seizure reduction as well as psychological and family variables. The objective of this study was to provide a comprehensive assessment of the children in Ireland who have undergone temporal lobectomy for the relief of intractable temporal lobe epilepsy and their families; together with an assessment of perceived behaviour change, retrospectively rated by the childrens' parents before and following surgery. The assessment evaluated intellectual functioning, behaviour problems, self-esteem, locus of control, family functioning and seizure status. The 20 participants in the study comprised 10 children who had undergone surgery for epilepsy and a comparison group of 10 children who were potential candidates for surgery. The main findings of the study showed that 50% of the children in the surgery group experienced a significant reduction in seizures and these children showed the most improved intellectual and psychological adjustment. A comparison of pre and post operative IQs showed that those who were rendered seizure-free showed no significant deterioration in intellectual functioning unlike those who continued to experience seizures. The two groups showed good personal adjustment on self-esteem and locus of control. Parents current and retrospective behaviour ratings of the children in the surgery-group reported an improvement in behaviour but they still reported clinically significant problems with hyperactivity . The two groups of parents demonstrated good family adjustment which may account for the good overall psychological adjustment of their children. Further research is required is explore more fully the variables that contribute to psychlogical adjustment following surgery for epilepsy