Evidence-based planning and costing palliative care services for children : novel multi-method epidemiological and economic exemplar

Background: Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings

Evaluating the effect of fishery closures: Lessons learnt from the Plaice Box

To reduce discarding of plaice Pleuronectes platessa in the North Sea flatfish fisheries, the major nursery areas were closed to large trawlers in 1995. The area closed was named the ‘Plaice Box’ (PB) and beam trawl effort fell by over 90% , while the exemption fleets of small flatfish beam trawlers, gill netters targeting sole (Solea solea) and shrimp (Crangon crangon) trawlers increased their effort. Contrary to the expectation, plaice landings and biomass declined. The initial support for the PB from the fisheries was lost, whereas other stakeholder groups claimed that any failure was due to the fact that fishing had never been completely prohibited in the area. To evaluate whether the PB has been an effective management measure, the changes in the ecosystem (plaice, demersal fish, benthos) and fisheries are analysed to test whether the observed changes are due to the PB or to changes in the environment unrelated to the PB. Juvenile growth rate of plaice decreased and juveniles moved to deeper waters outside the PB. Demersal fish biomass decreased, whereas the abundance of epibenthic predators (Asterias rubens and Cancer pagurus) increased in the PB. Endobenthos, in particular the main food items of plaice (polychaetes and small bivalves) remained stable or decreased both inside and outside the PB. Currently catches of both plaice and sole from within the PB are lower than in the late 1980s and the exemption fleet often prefers to fish outside the Plaice Box alongside much larger competitors. It is concluded that the observed changes are most likely related to changes in the North Sea ecosystem, which may be related to changes in eutrophication and temperature. It is less likely that they are related to the change in fishing. This case study highlights the importance setting testable objectives and an appropriate evaluation framework including both ecological and socio-economic indicators when implementing closed areas. Key words: Marine Protected Area, MPA, spatial management, fisheries management, discards, climate change, trawling impact, North Sea, benthos, ecosystem change, stakeholder perceptio

The foundations and architecture of autotutor

The Tutoring Research Group at the University of Memphis is developing an intelligent tutoring system which takes advantages of recent technological advances in the areas of semantic processing of natural language, world knowledge representation, multimedia interfaces, and fuzzy descriptions. The tutoring interaction is based on in-depth studies of human tutors, both skilled and unskilled. Latent semantic analysis will be used to semantically process and provide a representation for the student’s contributions. Fuzzy production rules select appropriate topics and tutor dialogue moves from a rich curriculum script. The production rules will implement a variety of different tutoring styles, from a basic untrained tutor to one which uses sophisticated pedagogical strategies. The tutor will be evaluated on the naturalness of its interaction, with Turing-style tests, by comparing different tutoring styles, and by judging learning outcomes

The foundations and architecture of autotutor

The Tutoring Research Group at the University of Memphis is developing an intelligent tutoring system which takes advantages of recent technological advances in the areas of semantic processing of natural language, world knowledge representation, multimedia interfaces, and fuzzy descriptions. The tutoring interaction is based on in-depth studies of human tutors, both skilled and unskilled. Latent semantic analysis will be used to semantically process and provide a representation for the student’s contributions. Fuzzy production rules select appropriate topics and tutor dialogue moves from a rich curriculum script. The production rules will implement a variety of different tutoring styles, from a basic untrained tutor to one which uses sophisticated pedagogical strategies. The tutor will be evaluated on the naturalness of its interaction, with Turing-style tests, by comparing different tutoring styles, and by judging learning outcomes

Long-term Follow-up Care for Childhood, Adolescent, and Young Adult Cancer Survivors

Progress in therapy has made survival into adulthood a reality for most children, adolescents, and young adults with a cancer diagnosis today. Notably, this growing population remains vulnerable to a variety of long-term therapy-related sequelae. Systematic ongoing follow-up of these patients is, therefore, important to provide for early detection of and intervention for potentially serious late-onset complications. In addition, health counseling and promotion of healthy lifestyles are important aspects of long-term follow-up care to promote risk reduction for physical and emotional health problems that commonly present during adulthood. Both general and subspecialty health care providers are playing an increasingly important role in the ongoing care of childhood cancer survivors, beyond the routine preventive care, health supervision, and anticipatory guidance provided to all patients. This report is based on the guidelines that have been developed by the Children's Oncology Group to facilitate comprehensive long-term follow-up of childhood, adolescent, and young adult cancer survivors (www.survivorshipguidelines.org)