The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review

Background The goal of much care in chronic childhood illness is to improve quality of life (QOL). However, surveys suggest QOL measures are not routinely included. In addition, there is little consensus about the quality of many QOL measures. Objectives To determine the extent to which quality of life (QOL) measures are used in paediatric clinical trials and evaluate the quality of measures used. Design Systematic literature review. Review Methods Included paediatric trials published in English between 1994 and 2003 involving children and adolescents up to the age of 20 years, and use of a standardised QOL measure. Data Sources included MEDLINE, CINAHL, EMB Reviews, AMED, BNI, PSYCHINFO, the Cochrane library, Internet, and reference lists from review articles. Results We identified 18 trials including assessment of QOL (4 Asthma, 4 Rhinitis, 2 Dermatitis, and single studies of Eczema, Cystic fibrosis, Otis media, Amblyopia, Diabetes, Obesity associated with a brain tumour, Idiopathic short stature, and Congenital agranulocytosis). In three trials, parents rated their own QOL but not their child's. Fourteen different QOL measures were used but only two fulfilled our minimal defined criteria for quality. Conclusions This review confirms previous reports of limited use of QOL measures in paediatric clinical trials. Our review provides information about availability and quality of measures which will be of especial value to trial developers

Investigating the success factors of expert users to inform device development

Objective: Expert user testing is a well recognised tool within user experience and human computer interaction design. Within the domain of assistive technology device design, however, this technique seems to be little used. It is suggested that studying the success factors of expert assistive technology device users may provide a valuable source of data to inform development of assistive technology devices. This paper presents an example of this technique, within the context of a number of studies carried out by the authors, using the example of preliminary data from a study informing the development of an innovative Augmentative and Alternative Communication (AAC) device. Main Content: The paper presents a qualitative study whose objective was to influence the design and further development of an innovative voice-input voice-output communication aid (Vivoca) which has previously reached proof-of-concept stage. The Vivoca device is designed for people with dysarthria and this dictates a number of specific constraints and considerations. In order to understand how Vivoca could be designed to be used successfully by people with dysarthria, this study aimed to identify the factors associated with expert users' successful use of current AAC devices. In order to allow comparison, the study included users with some understandable speech and also those with no understandable speech. The study procedure was designed to provide a profile of participants' communication methods and to identify the factors that participants felt made their communication successful. Results: Preliminary results from the study (currently underway) are presented, including a qualitative analysis of interview data, and data profiling participants' communication methods and context. Initial data has highlighted the very specific requirements for a communication aid design for people with some understandable speech. Conclusion: Study of expert users may provide an effective tool to help inform assistive technology device development

Analysis of free analyte fractions by rapid affinity chromatography

The invention is generally directed toward an analytical method to determine the concentration of the free analyte fraction in a sample. More particularly, the method encompasses applying a sample comprising a free and bound analyte fraction to an affinity column capable of selectively extracting the free fraction in the millisecond time domain. The signal generated by the free fraction is then quantified by standard analytical detection techniques. The concentration of the free fraction may then be determined by comparison of its signal with that of a calibration curve depicting the signal of known concentration of the same analyte

Survey of psychosocial support provided by UK paediatric oncology centres

Aim: To obtain a comprehensive overview of current patterns of psychosocial support provided by National Health Service ( NHS) paediatric oncology treatment centres across the UK. Methods: A postal questionnaire was sent to co-ordinators in the UK Children's Cancer Study Group ( a professional body that is responsible for the organisation of treatment and management of childhood cancer in the UK) in 21 treatment centres and three separate Teenage Cancer Trus units. A range of psychosocial topics were explored, including ratio of staff providing support to patients; facilities provided for children and families; psychosocial support services such as support groups; information provision; and transition support. Results: There were many good areas of support provided by centres, but there was also a lack of standard practices and procedures. All centres employed social workers, play specialists, and paediatric oncology outreach nurses, but patient to staff ratios varied across centres. The poorest staff provision was among psychologists, where patient to staff ratios ranged from 132:1 to 1100:1. Written information was standard practice, while provision of other types of information (audiovisual, online) varied; none of the centres provided audio information specifically for children/young people. Conclusion: This variability in practices among centres frequently occurred, as centres rarely had procedures formally agreed or recorded in writing. British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service. This study further demonstrates the importance of standards and the need to agree guidelines for the provision of psychosocial support for children/young people and their families throughout the course of the illness

Antarctic iron meteorites: An unexpectedly high proportion of falls of unusual interest

The inhabited and explored areas of Earth have contributed 725 iron meteorites, accounting for 28% of the 2611 authenticated meteorites known of all types. Observed fall statistics give a much different view of relative abundance. The 42 historic iron meteorite falls spanning 230 years suggests a frequency of one fall per 5.6 years and represents only 4.9% of the total 853 known falls. Antarctic iron meteorite recoveries offer promise of providing a new perspective on the influx problem. At least 42 iron meteorite specimens were found during the last 25 years by various field teams working in Antarctica. Most of these specimens were not described in detail, but the available data indicates that 21 separate falls are represented, 50% of the number of recovered specimens. Twelve of the 21 falls were both structurally classified and placed into chemical groups. They are listed in order of increasing structural complexity and/or Ni content

The Superbubble Size Distribution in the Interstellar Medium of Galaxies

We use the standard, adiabatic shell evolution to predict the size distribution N(R) for populations of OB superbubbles in a uniform ISM. We derive N(R) for simple cases of superbubble creation rate and mechanical luminosity function (MLF). For R < the characteristic radius R_e, N(R) is dominated by stalled objects, while for R>R_e it is dominated by growing objects. We also briefly investigate N(R) resulting from momentum-conserving shell evolution. We predict a peak in N(R) corresponding to individual SNRs. To estimate the MLF, we also examine evolutionary effects on the HII region luminosity function (HII LF), finding that for nebular luminosity fading as a power law in time, there is a minimum observed slope for the HII LFs. Comparison with the largely complete HI hole catalog for the SMC shows surprising agreement in the predicted and observed slope of N(R), suggesting that no other fundamental process is needed to explain the size distribution of shells in the SMC. Further comparison with largely incomplete HI data for M31, M33, and Holmberg II is also encouraging. We present expressions for the ISM porosity parameters, and estimate that they are substantially <1 for all of the galaxies except Holmberg II. Most of these galaxies therefore may not be strongly dominated by a hot interstellar component. However, porosity results for the Galaxy remain inconclusive.Comment: 25 pages, MN latex, 4 figures. MNRAS accepted. Complete abstract and preprint also available at http://ast.cam.ac.uk/~oey/oeypubs.htm