Improving support for older people looking after someone with advanced cancer

The briefing paper is about the findings and recommendations from a research project conducted at the University of Nottingham, with funding awarded by Macmillan Cancer Support. The project was set up to study the experiences and main support needs of older carers looking after someone with advanced cancer and to facilitate the active involvement of carers in the research process. Looking after someone with advanced cancer approaching the end of their life has a substantial and enduring impact on older carers. Various factors contribute to the diverse quality and impact of end of life care experiences for both the person with advanced cancer and their caregiver. These include factors relating to the care giver and care recipient, such as the communication style and quality of relationship between them; the availability, provision and quality of informal support, and the duration of the end of life care phase. They also include factors external to the care giver and care recipient such as the availability, provision and quality of formal health and social care services for both the care giver and the person with advanced cancer. The study participants main support needs and recommendations for improving support for older carers are provided

Fatal accident inquiries into 83 deaths in Scottish prison custody: 2010-2013.

BACKGROUND: The only non-legal reference in Lord Cullen's Review of fatal accident inquiry (FAI) Legislation in Scotland (2009) was my audit of FAIs into 97 deaths in prison custody in Scotland, 1999-2003: recommending that waiting time from prisoner death to end of FAI should be less than 1 year for 90% of FAIs, and epidemiological rules for FAIs to have a written determination versus formal findings. AIMS: Audit of FAIs into 83 deaths in Scottish prison custody in the period 2010-2013. METHOD: Assessement of waiting times from prisoner death to end of FAI; dissemination of written determinations; self-inflicted death rate per 1000 prisoner-years; cause of natural deaths; and yellow card submissions. Detailed cross-checking was nec37essary between Scottish Prison Service and courts' websites and the Scottish Fatalities Investigation Unit. RESULTS: Of 83 FAIs into deaths in Scottish prison custody, 2010-2013, 37 (45%) were long-awaited (ongoing >2 years after the prisoner's death); 16 (19%, 95% CI 11-28%) beyond 3 years. Of 37 long-awaited FAIs, 27 made written determinations but only 12 of these (44%) were published. Self-inflicted deaths numbered 36: 1.1 per 1000 prisoner-years (95% CI 0.75-1.48). Of 47 deaths from natural causes, cardiovascular disease accounted for 23 (49%, 95% CI 34-63%); liver disease was implicated in 10 of 47. To support pharmacovigilance, submissions were made to Medicines and Healthcare Regulatory Agency for eight deaths (10%, 95% CI 4-19%). CONCLUSIONS: FAIs into prisoner deaths in Scotland are too long-awaited given that four (5%) identified precautions that could have prevented death

Older Carers and Involvement in Research

The briefing paper describes the views, experiences, motivations and plans of six older carers who decided to stay involved in research following their participation in a one year project and some research training at the University of Nottingham funded by Macmillan Cancer Support. The project was set up to study the experiences and main support needs of older carers looking after someone with advanced cancer and was designed to also encourage and facilitate the active involvement of carers in the research proces

Maximum likelihood and pseudo score approaches for parametric time-to-event analysis with informative entry times

We develop a maximum likelihood estimating approach for time-to-event Weibull regression models with outcome-dependent sampling, where sampling of subjects is dependent on the residual fraction of the time left to developing the event of interest. Additionally, we propose a two-stage approach which proceeds by iteratively estimating, through a pseudo score, the Weibull parameters of interest (i.e., the regression parameters) conditional on the inverse probability of sampling weights; and then re-estimating these weights (given the updated Weibull parameter estimates) through the profiled full likelihood. With these two new methods, both the estimated sampling mechanism parameters and the Weibull parameters are consistently estimated under correct specification of the conditional referral distribution. Standard errors for the regression parameters are obtained directly from inverting the observed information matrix in the full likelihood specification and by either calculating bootstrap or robust standard errors for the hybrid pseudo score/profiled likelihood approach. Loss of efficiency with the latter approach is considered. Robustness of the proposed methods to misspecification of the referral mechanism and the time-to-event distribution is also briefly examined. Further, we show how to extend our methods to the family of parametric time-to-event distributions characterized by the generalized gamma distribution. The motivation for these two approaches came from data on time to cirrhosis from hepatitis C viral infection in patients referred to the Edinburgh liver clinic. We analyze these data here.Comment: Published in at http://dx.doi.org/10.1214/14-AOAS725 the Annals of Applied Statistics (http://www.imstat.org/aoas/) by the Institute of Mathematical Statistics (http://www.imstat.org

Modeling the initiation of others into injection drug use, using data from 2,500 injectors surveyed in Scotland during 2008-2009

The prevalence of injection drug use has been of especial interest for assessment of the impact of blood-borne viruses. However, the incidence of injection drug use has been underresearched. Our 2-fold aim in this study was to estimate 1) how many other persons, per annum, an injection drug user (IDU) has the equivalent of full responsibility (EFR) for initiating into injection drug use and 2) the consequences for IDUs' replacement rate. EFR initiation rates are strongly associated with incarceration history, so that our analysis of IDUs' replacement rate must incorporate when, in their injecting career, IDUs were first incarcerated. To do so, we have first to estimate piecewise constant incarceration rates in conjunction with EFR initiation rates, which are then combined with rates of cessation from injecting to model IDUs' replacement rate over their injecting career, analogous to the reproduction number of an epidemic model. We apply our approach to Scotland's IDUs, using over 2,500 anonymous injector participants who were interviewed in Scotland's Needle Exchange Surveillance Initiative during 2008-2009. Our approach was made possible by the inclusion of key questions about initiations. Finally, we extend our model to include an immediate quit rate, as a reasoned compensation for higher-than-expected replacement rates, and we estimate how high initiates' quit rate should be for IDUs' replacement rate to be 1