Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK.

BACKGROUND: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. METHOD: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES-SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. RESULTS: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. CONCLUSIONS: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

BACKGROUND: Population-based data are presented on the nature of dying in intellectual disability services. METHODS: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. RESULTS: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. CONCLUSION: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

End-of-life care in intellectual disability: a retrospective cross-sectional study.

BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown. AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population. DESIGN: Nationwide population-based postbereavement survey. PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths. RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population. CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

Regeneration of Pancreatic ß-Islet Cells in a Type-II Diabetic.

A case report is presented in which a type-II diabetic patient significantly improved his dysfunctional ß-islet cells using a combination of a strenuous exercise program, cyclical ketogenic diet, and oral GABA/probiotic supplementation. The patient was diagnosed with type-II diabetes at the age of 41 which then progressed through a typical series of treatment changes over 14 years. Treatment periods consisted of metformin therapy alone for 4 years followed by a metformin/glyburide combination therapy for 6 years, and eventually an insulin/metformin combination therapy for 4 years. One year after the initiation of insulin, the patient increased the level of strenuous physical activity (hiking and weight lifting) and adopted a ketogenic diet. Oral GABA and probiotic supplementation were also initiated at the age of 52.7. By the age of 55, the patient no longer required any insulin and is currently being managed with metformin alone. C-peptide values indicate a functional improvement of the ß-islet cells during the time of insulin/GABA/probiotic treatment.

Human and environmental impacts on river sediment microbial communities.

Sediment microbial communities are responsible for a majority of the metabolic activity in river and stream ecosystems. Understanding the dynamics in community structure and function across freshwater environments will help us to predict how these ecosystems will change in response to human land-use practices. Here we present a spatiotemporal study of sediments in the Tongue River (Montana, USA), comprising six sites along 134 km of river sampled in both spring and fall for two years. Sequencing of 16S rRNA amplicons and shotgun metagenomes revealed that these sediments are the richest (∼ 65,000 microbial 'species' identified) and most novel (93% of OTUs do not match known microbial diversity) ecosystems analyzed by the Earth Microbiome Project to date, and display more functional diversity than was detected in a recent review of global soil metagenomes. Community structure and functional potential have been significantly altered by anthropogenic drivers, including increased pathogenicity and antibiotic metabolism markers near towns and metabolic signatures of coal and coalbed methane extraction byproducts. The core (OTUs shared across all samples) and the overall microbial community exhibited highly similar structure, and phylogeny was weakly coupled with functional potential. Together, these results suggest that microbial community structure is shaped by environmental drivers and niche filtering, though stochastic assembly processes likely play a role as well. These results indicate that sediment microbial communities are highly complex and sensitive to changes in land use practices.

Active support: a critical review and commentary.

BACKGROUND: Active Support (AS) is an approach for promoting increased engagement in activities by people with intellectual disability (ID). METHOD: We critically reviewed the available research on AS, and added a commentary to help guide future research and practice. RESULTS: Despite weaknesses in the research design of some studies, there is consistent evidence that AS results in increased engagement in activities. There is also some limited evidence of other beneficial outcomes. All published research to date has involved people with ID in community group homes with 24-hour staffing. CONCLUSION: The established efficacy of AS for increasing engagement means that research attention can now be given to: (a) developing AS to enhance its positive impact on outcomes such as choice and relationships; (b) exploring the wider implementation of AS beyond community group homes and people with ID; and (c) examining the effectiveness of wide-scale implementation of AS, with careful attention to issues such as management, organisational and staffing factors, and cost.

Hurricane destructive power predictions based on historical storm and sea surface temperature data.

Forecasting destructive hurricane potential is complicated by substantial, unexplained intraannual variation in storm-specific power dissipation index (PDI, or integrated third power of wind speed), and interannual variation in annual accumulated PDI (APDI). A growing controversy concerns the recent hypothesis that the clearly positive trend in North Atlantic Ocean (NAO) sea surface temperature (SST) since 1970 explains increased hurricane intensities over this period, and so implies ominous PDI and APDI growth as global warming continues. To test this "SST hypothesis" and examine its quantitative implications, a combination of statistical and probabilistic methods were applied to National Hurricane Center HURDAT best-track data on NAO hurricanes during 1880-2002, and corresponding National Oceanographic and Atmospheric Administration Extended Reconstruction SST estimates. Notably, hurricane behavior was compared to corresponding hurricane-specific (i.e., spatiotemporally linked) SST; previous similar comparisons considered only SST averaged over large NAO regions. Contrary to the SST hypothesis, SST was found to vary in a monthly pattern inconsistent with that of corresponding PDI, and to be at best weakly associated with PDI or APDI despite strong correlation with corresponding mean latitude (R(2)= 0.55) or with combined mean location and a approximately 90-year periodic trend (R(2)= 0.70). Over the last century, the lower 75% of APDIs appear randomly sampled from a nearly uniform distribution, and the upper 25% of APDIs from a nearly lognormal distribution. From the latter distribution, a baseline (SST-independent) stochastic model was derived predicting that over the next half century, APDI will not likely exceed its maximum value over the last half century by more than a factor of 1.5. This factor increased to 2 using a baseline model modified to assume SST-dependence conditioned on an upper bound of the increasing NAO SST trend observed since 1970. An additional model was developed that predicts PDI statistics conditional on APDI. These PDI and APDI models can be used to estimate upper bounds on indices of hurricane power likely to be realized over the next century, under divergent assumptions regarding SST influence.

Restraint and self-injury in people with intellectual disabilities: a review.

Most of the recent debate concerning the ethics of physical interventions has focused on the management of aggressive and destructive behaviours, neglecting the management of self-injurious behaviour. This is an important omission, given the extremely serious consequences that can arise from this form of challenging behaviour. The present article reviews types of restraint used to manage self-injury, prevalence of use, and main and side effects of restraint use. It describes some good practice standards and highlights the need for further research and debate in this complex area.

Risks of mortality and morbidity from worldwide terrorism: 1968-2004.

Worldwide data on terrorist incidents between 1968 and 2004 gathered by the RAND Corporation and the Oklahoma City National Memorial Institute for the Prevention of Terrorism (MIPT) were assessed for patterns and trends in morbidity/mortality. Adjusted data analyzed involve a total of 19,828 events, 7,401 "adverse" events (each causing >or= 1 victim), and 86,568 "casualties" (injuries), of which 25,408 were fatal. Most terror-related adverse events, casualties, and deaths involved bombs and guns. Weapon-specific patterns and terror-related risk levels in Israel (IS) have differed markedly from those of all other regions combined (OR). IS had a fatal fraction of casualties about half that of OR, but has experienced relatively constant lifetime terror-related casualty risks on the order of 0.5%--a level 2 to 3 orders of magnitude more than those experienced in OR that increased approximately 100-fold over the same period. Individual event fatality has increased steadily, the median increasing from 14% to 50%. Lorenz curves obtained indicate substantial dispersion among victim/event rates: about half of all victims were caused by the top 2.5% (or 10%) of harm-ranked events in OR (or IS). Extreme values of victim/event rates were approximated fairly well by generalized Pareto models (typically used to fit to data on forest fires, sea levels, earthquakes, etc.). These results were in turn used to forecast maximum OR- and IS-specific victims/event rates through 2080, illustrating empirically-based methods that could be applied to improve strategies to assess, prevent, and manage terror-related risks and consequences.

Lugol's test reexamined again: buccal cells.

Lugol's iodine staining technique was used to examine oral samples from 10 men and 10 women. Examination of saliva samples before and after extraction with water shows that the low levels (49 positive cells and 3,951 negative cells) of glycogen in buccal epithelial cells become even lower after water extraction (0 positive cells and 4,000 negative cells). In addition to the 20 samples used in this paper, 40 oral swabs extracted with water were examined under classroom conditions with much less than 1% of the epithelial cells being positive for glycogen. Furthermore, 119 saliva samples from chewed gauze in sexual assault kits were extracted with water and all of them yielded less than 1% glycogen positive cells. This paper proposes that when more than 1% of the nucleated squamous epithelial cells are glycogen positive with Lugol's test after extraction in water, it is reasonable to eliminate the mouth as a source of these glycogen positive cells.

Rational resourcing and productivity: relationships among staff input, resident characteristics, and group home quality.

Relationships among staff input per resident, resident characteristics, setting characteristics, and service quality were investigated. Data were obtained from 51 group homes in Wales on (a) resident numbers, ages, gender, adaptive behavior, challenging behavior, and additional disabilities; (b) allocated staff hours and actual staff costs; (c) provider agency, date of provision, and internal operational arrangements; and (d) resident receipt of staff attention and resident activity. Variation in staff input was related to resident challenging behavior, smaller residence size, and provider agency or date of provision. Staffing input was associated with resident receipt of attention, as were operational arrangements. Resident activity was related to resident adaptive behavior and receipt of attention but not resource input. Cost-effectiveness implications are discussed.