Quality of life in children newly diagnosed with cancer and their mothers

Background With current treatments, approximately 75% of children diagnosed with cancer can expect to achieve disease-free survival. However, treatments are complex and aggressive, potentially compromising QOL for children and their parents. Although previous work has shown increased anxiety and depression among parents after diagnosis, the recent development of standardised measures of QOL enables us to look more directly at the impact of diagnosis on mothers' and children's QOL. The aims of this study are to i) describe QOL for children and their mothers after diagnosis by comparing their scores with population norms, ii) explore the relationship between mothers' worries about the illness and their QOL, and iii) determine the relationship between mothers ratings of their own QOL and their child. Method A total of 87 families took part, constituting 60% of those eligible. The children included 58 males and 29 females aged between 2 years 6 months to 16 years 3 months (mean = 7 years, median = 5 years 8 months). Diagnoses were acute lymphoblastic leukaemia (ALL, n = 57), brain tumours (n = 11), bone tumours (n = 17) and 2 rare cancers. Mothers completed questionnaires about their own and the child's QOL. Results Mothers' reported their own and the child's QOL to be significantly lower than population norms. There were significant correlations between mothers' worries and their own and their ratings of the child's QOL and mothers' ratings of their own QOL correlated with their ratings of the child's QOL. Conclusion Both children and their mothers experience significantly compromised QOL in the months following diagnosis. Mothers who rated their own QOL to be poor also rate their child's QOL to be low. These results suggest caution is required where mothers rate their child's QOL. Efforts must continue to be made to improve QOL of children especially in the period immediately following diagnosis

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

Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) generic core scales

Background Health related quality of life (HRQL) has been recognised as an important paediatric outcome measurement. One of the more promising measures to emerge in recent years is the Pediatric Quality Of Life Inventory (PedsQL™), developed in the US. Advantages of the PedsQL™ include brevity, availability of age appropriate versions and parallel forms for child and parent. This study developed a UK-English version of PedsQL™ generic module and assessed its performance in a group of UK children and their parents. Methods PedsQL™ was translated to UK-English. The psychometric properties of the UK version were then tested following administration to 1399 children and 970 of their parents. The sample included healthy children, children diagnosed with asthma, diabetes or inflammatory bowel disease and children in remission from cancer. Results Psychometric properties were similar to those reported for the original PedsQL™. Internal reliability exceeded 0.70 for all proxy and self-report sub-scales. Discriminant validity was established for proxy and self-report with higher HRQL being reported for healthy children than those with health problems. Sex differences were noted on the emotional functioning subscale, with females reporting lower HRQL than males. Proxy and self-report correlation was higher for children with health problems than for healthy children. Conclusion The UK-English version of PedsQL™ performed as well as the original PedsQL™ and is recommended for assessment of paediatric HRQL in the UK

Structural and Linear Elastic Properties of DNA Hydrogels by Coarse-Grained Simulation

© 2019 American Chemical Society. We introduce a coarse-grained numerical model that represents a generic DNA hydrogel consisting of Y-shaped building blocks. Each building block comprises three double-stranded DNA arms with single-stranded DNA sticky ends, mimicked by chains of beads and patchy particles, respectively, to allow for an accurate representation of both the basic geometry of the building blocks and the interactions between complementary units. We demonstrate that our coarse-grained model reproduces the correct melting behavior between the complementary ends of the Y-shapes, and their self-assembly into a percolating network. Structural analysis of this network reveals three-dimensional features consistent with a uniform distribution of inter-building-block dihedral angles. When applying an oscillatory shear strain to the percolating system, we show that the system exhibits a linear elastic response when fully connected. We finally discuss to what extent the system's elastic modulus may be controlled by simple changes to the building block complementarity. Our model offers a computationally tractable approach to predicting the structural and mechanical properties of DNA hydrogels made of different types of building blocks

An elasto-visco-plastic model for immortal foams or emulsions

A variety of complex fluids consist in soft, round objects (foams, emulsions, assemblies of copolymer micelles or of multilamellar vesicles -- also known as onions). Their dense packing induces a slight deviation from their prefered circular or spherical shape. As a frustrated assembly of interacting bodies, such a material evolves from one conformation to another through a succession of discrete, topological events driven by finite external forces. As a result, the material exhibits a finite yield threshold. The individual objects usually evolve spontaneously (colloidal diffusion, object coalescence, molecular diffusion), and the material properties under low or vanishing stress may alter with time, a phenomenon known as aging. We neglect such effects to address the simpler behaviour of (uncommon) immortal fluids: we construct a minimal, fully tensorial, rheological model, equivalent to the (scalar) Bingham model. Importantly, the model consistently describes the ability of such soft materials to deform substantially in the elastic regime (be it compressible or not) before they undergo (incompressible) plastic creep -- or viscous flow under even higher stresses.Comment: 69 pages, 29 figure

Feasibility of targeted early detection for melanoma: a population-based screening study

The feasibility of targeted screening for cutaneous malignant melanoma in the UK using a postal questionnaire and invitation to screening by a consultant dermatologist was investigated in a population based cross-sectional survey. A total of 1600 people aged 25–69 years, stratified by the social deprivation score of wards within one general practice, were randomly selected from a population of 8000.1227 (77%) returned the questionnaire and 896 (56%) attended the screening clinic. Uptake was lower for men (P< 0.001), those aged under 50 (P< 0.001), people from deprived areas (P< 0.001) and skin types III and IV (men only, P< 0.001). Twenty per cent of women and 10% of men felt nervous about attending the clinic, but only 4% were worried by the questionnaire. The level of agreement between the self- and dermatologist's assessments of risk factors was best for hair colour (Kappa = 0.67, sensitivity 73% and specificity 98%). People tended to under-report their level of risk. Over 95% knew about at least one major sign, but 54% reported incorrect signs of melanoma. Targeted screening for melanoma in the UK will be hampered by difficulties in accurately identifying the target population. Strategies to improve skin self-awareness rather than screening should be developed and evaluated. © 2000 Cancer Research Campaig

How standard is standard care? Exploring control group outcomes in behaviour change interventions for young people with type 1 diabetes

Objective: Poor descriptions of standard care may compromise interpretation of results in randomised controlled trials (RCTs) of health interventions. We investigated quality of standard care in RCTs of behaviour change interventions for young people with type 1 diabetes and consider implications for evaluating trial outcomes. Design: We conducted systematic searches for articles published between 1999 and 2012. We extracted standard care descriptions and contacted trial authors to complete a checklist of standard care activities. The relationship between standard care quality and outcomes was examined via subgroup meta-analyses and meta-regression. Main outcome measures: Standard care descriptions, standard care quality, and relationships between standard care quality with medical and psychological outcomes. Results: We identified 20 RCTs described across 26 articles. Published descriptions of standard care were limited to service-level features. Author responses indicated standard care provision extended beyond published accounts. Subgroup analyses suggested control groups receiving higher standard care quality showed larger improvements in both medical and psychological outcomes, although standard care quality did not predict outcomes significantly. Conclusion: The quality of care delivered to control group participants can influence outcomes of RCTs. Inadequate reporting exacerbates this issue by masking variations between trials. We argue for increased clarity in reporting standard care in future trials

Fluctuation-dissipation theorem in an aging colloidal glass

We provide a direct experimental test of the Stokes-Einstein relation as a special case of the fluctuation-dissipation theorem (FDT) in an aging colloidal glass. The use of combined active and passive microrheology allows us to independently measure both the correlation and response functions in this non-equilibrium situation. Contrary to previous reports, we find no deviations from the FDT over several decades in frequency (1 Hz-10 kHz) and for all aging times. In addition, we find two distinct viscoelastic contributions in the aging glass, including a nearly elastic response at low frequencies that grows during aging. This is the clearest change in material properties of the system with aging.Comment: 5 pages,4 figure