Kids’ Life and Times: using an Internet survey to measure children’s health-related quality of life

Objective
To examine the psychometric properties of an internet version of a children and young person's quality of life measure originally designed as a paper questionnaire.

Methods
Participants were 3,440 10 and 11 year old children in Northern Ireland who completed the KIDSCREEN-27 online as part of a general attitudinal survey. The questionnaire was animated using cartoon characters that are familiar to most children and the questions appeared on screen and were read aloud by actors.

Results
Exploratory principal component analysis of the online version of the questionnaire supported the existence of five components in line with the paper version. The items loaded on the components that would be expected based on previous findings with five domains - physical well-being,psychological well-being, autonomy and parents, social support and peers and school environment.Internal consistency reliability of the five domains was measured using Cronbach's alpha and the results suggested that the scale scores were reliable. The domain scores were similar to those reported in the literature for the paper version.

Conclusions
These results suggest that the factor structure and internal consistency reliability scores of the KIDSCREEN-27 embedded within an online survey are comparable to those reported in the literature for the paper version.

Tolstoy, stories, and facilitating insight in end of life care: Exploring ethics through vicarious experience (with Glackin M and Henry R)

Facilitating moral insight in end of life care can be challenging, and the purpose of this paper is to illustrate how this can be nurtured by means of creative literature. Tolstoy's Death of Ivan Ilych is presented as an example of such literature. Aristotle's Nichomean Ethics provides the philosophical underpinning for the method used. Sources also include the nursing literature, and students' evaluations of the impact of Tolstoy's novella on their ability to perceive the ethical issues arising in end of life care. Comments from evaluations were analysed and significant themes emerged. Students' comments clearly support the suggestion that use of this novella has facilitated insight into ethical issues at the end of life. Evaluations also indicate that vicarious experience gained through reading this novella has helped to nurture sensitivity and professional insight into the importance of compassion and offering ‘comfort’ to the dying person.

Data mining approach identifies research priorities and data requirements for resolving the red algal tree of life

Background. The assembly of the tree of life has seen significant progress in recent years but algae and protists have been largely overlooked in this effort. Many groups of algae and protists have ancient roots and it is unclear how much data will be required to resolve their phylogenetic relationships for incorporation in the tree of life. The red algae, a group of primary photosynthetic eukaryotes of more than a billion years old, provide the earliest fossil evidence for eukaryotic multicellularity and sexual reproduction. Despite this evolutionary significance, their phylogenetic relationships are understudied. This study aims to infer a comprehensive red algal tree of life at the family level from a supermatrix containing data mined from GenBank. We aim to locate remaining regions of low support in the topology, evaluate their causes and estimate the amount of data required to resolve them. Results. Phylogenetic analysis of a supermatrix of 14 loci and 98 red algal families yielded the most complete red algal tree of life to date. Visualization of statistical support showed the presence of five poorly supported regions. Causes for low support were identified with statistics about the age of the region, data availability and node density, showing that poor support has different origins in different parts of the tree. Parametric simulation experiments yielded optimistic estimates of how much data will be needed to resolve the poorly supported regions (ca. 103 to ca. 104 nucleotides for the different regions). Nonparametric simulations gave a markedly more pessimistic image, some regions requiring more than 2.8 105 nucleotides or not achieving the desired level of support at all. The discrepancies between parametric and nonparametric simulations are discussed in light of our dataset and known attributes of both approaches. Conclusions. Our study takes the red algae one step closer to meaningful inclusion in the tree of life. In addition to the recovery of stable relationships, the recognition of five regions in need of further study is a significant outcome of this work. Based on our analyses of current availability and future requirements of data, we make clear recommendations for forthcoming research.

Measuring health-related quality of life after stroke: A brief tool.

Routine assessment of health-related quality of life (HRQoL) can be time consuming and burdensome for a person with stroke. Therefore the aim of this study was to develop and test a brief instrument for assessing HRQoL among people with stroke. The Quality of Life after Stroke Scale (QLASS) was constructed from items within the Quality of Life Index-Stroke Version and the Chronic Respiratory Disease Questionnaire. It was administered to 92 people with stroke at three points in time: immediately after discharge from hospital, 6 months and 12 months later. Results suggest that the QLASS has 19 items which represent three factors: emotional functioning, mastery and fatigue which correlate with valid measures of health status and activities of daily living. The QLASS is proposed as a brief, valid HRQoL tool for use among people with stroke.

'Murder or Mercy?' an innovative module helping UK medical students to articulate their own ethical standpoints regarding end-of-life decisions

Objectives This student selected component (SSC) was designed to equip United Kingdom (UK) medical students to respond ethically and with sensitivity to requests they might receive as qualified doctors in regard to euthanasia and assisted dying. The aim was to expose students to relevant opinions and experiences and to provide opportunities to explore and justify their own views and rehearse ethical decision making in a safe learning environment. Method The module is delivered by specialists from a number of disciplines including law, theology, medicine and nursing, each providing students with a working knowledge allowing them to actively discuss cases, articulate their own views and practise ethical reasoning through group and individual study. Visits to local intensive care units, palliative care wards and hospices are integrated effectively with theory. Student assessment comprises a dissertation, student-led debate and reflective commentary. Module impact was evaluated by analysis of student coursework and a questionnaire. Results Students found the content stimulating and relevant to their future career and agreed that the module was well-structured and that learning outcomes were achieved. They greatly appreciated the clinical context provided by the visits and opportunities to apply ethical reasoning to real cases and to debate ethical issues with peers. Students reported an increased discernment of the ethical and legal position and practical considerations and a greater awareness of the range of professional and lay viewpoints held. Student perceptions were confirmed on analysis of their submitted coursework. Many participants were less strongly in favour of euthanasia and assisted dying on module completion than at the outset but all felt better equipped to justify their own viewpoint and to respond appropriately to patient requests. Conclusions The multi-disciplinary nature of this course is helpful in preparing students to deal effectively and sensitively with ethical dilemmas they will encounter in their medical career. Use of an integrated, learner-centred approach equips students to actively engage with their peers in discussion of such issues and to formulate and defend their own position.

Health-related quality of life and children’s happiness with their childcare

Background Almost without exception, research into the range and quality of childcare provision, and its correlates with children’s development, comes from the perspective of adults. Parents, childcare workers, teachers and the general public have all been asked for their views on childcare. In contrast, there is a dearth of information on attitudes to childcare provision and its correlates from the perspective of the children themselves.

Methods A total of 3657 Primary 7 children, who are 10 or 11 years of age, completed the KIDSCREEN-27 health-related quality of life (HRQoL) measure along with questions on their childcare provision as part of an online survey carried out in schools.

Results Most children receiving childcare from people other than their parents were completely happy with their care. Childcare was related to poorer HRQoL for girls on four of the ?ve KIDSCREEN domains, although the effect sizes were small. For both boys and girls, there were statistically signi?cant, although modest, correlations between happiness with childcare and scores on all ?ve domains of the KIDSCREEN-27.

Conclusions Overall, the ?ndings suggest that most children are happy with their care and that any differences between the HRQoL of those who are cared for by their parents and those who are not are small to moderate.

Assessing quality of life in cardiac rehabilitation: Choosing an appropriate tool

Quality of life is an important outcome for people undergoing cardiac rehabilitation. This paper discusses the difficulties with defining the concept of quality of life and how it might be distinct from the concept of health-related quality of life. Based on a review of the literature, a description is provided of health-related quality of life questionnaires that have been used in cardiac rehabilitation populations. Some criteria for choosing between these questionnaires are then discussed and, finally, a brief discussion is presented of the concept of response shift and how this might influence the assessment of health-related quality of life in a cardiac rehabilitation setting.