Summary
Background
Paediatric localized scleroderma (LS) can negatively impact health‐related quality of life (HRQoL) by causing skin fibrosis, abnormal limb development, disfigurement, and ...side‐effects from immunosuppressive treatment. Studies to date have rarely included qualitative data gathered directly from paediatric patients with LS.
Objectives
To assess the impact of LS on HRQoL among affected youth and their caregivers using qualitative description.
Methods
Youth with all subtypes of LS and their caregivers were purposively sampled to participate in age‐appropriate focus groups (younger children, early adolescents, adolescents). Each group started with a drawing exercise followed by in‐depth discussion of topics including skin symptoms (e.g. itch, pain, tightness), functional impairment, physical appearance, family and peer relationships, and treatment burden. Focus groups were transcribed verbatim and co‐coded, with adjudication of differentially applied codes. The study findings were triangulated via comparison with adult reports and published literature.
Results
Eleven youth aged 9–16 years and 16 caregivers participated in three focus groups each. Major identified areas of impact included uncomfortable skin symptoms, physical functioning limitations, extracutaneous manifestations, body image, bullying and teasing, unwanted questioning from others, and treatment side‐effects and burden.
Conclusions
This is the first qualitative study of HRQoL in LS to include all major LS subtypes. We identified domains of HRQoL impacted by LS, some of which replicate earlier findings and some of which were novel. As impact also changed with developmental stage, our findings support the need for ongoing, formal evaluation of HRQoL in children and adolescents with LS.
What is already known about this topic?
Paediatric localized scleroderma (LS) negatively impacts health‐related quality of life (HRQoL) via skin fibrosis, musculoskeletal and other extracutaneous manifestations from the disease process, and side‐effects of systemic immunosuppression.
The full impact of LS and its treatment on HRQoL is incompletely understood, with only one published qualitative study of youth with LS, which was limited to facial involvement.
There are no qualitative studies of HRQoL in other LS subtypes to date.
What does this study add?
This is the first qualitative evaluation of HRQoL in youth with LS inclusive of all disease subtypes.
Our study confirms that LS affects HRQoL across multiple distinct domains, including uncomfortable skin sensations, impacts on body image, bullying and teasing from peers, unwanted intrusive questioning, physical limitations, extracutaneous manifestations and high treatment burden.
These results indicate the need for ongoing clinical assessment of paediatric patients in these domains.
What are the clinical implications of the work?
These results support the need to care for patients with LS holistically by synthesizing cutaneous, musculoskeletal and extracutaneous disease assessments with multidimensional evaluation of psychosocial impact and adverse effects of treatments.
The development of an LS‐specific HRQoL measure would advance such efforts.
The role of lipids in mechanosensation Pliotas, Christos; Dahl, A Caroline E; Rasmussen, Tim ...
Nature structural & molecular biology,
12/2015, Letnik:
22, Številka:
12
Journal Article
Recenzirano
Odprti dostop
The ability of proteins to sense membrane tension is pervasive in biology. A higher-resolution structure of the Escherichia coli small-conductance mechanosensitive channel MscS identifies alkyl ...chains inside pockets formed by the transmembrane helices (TMs). Purified MscS contains E. coli lipids, and fluorescence quenching demonstrates that phospholipid acyl chains exchange between bilayer and TM pockets. Molecular dynamics and biophysical analyses show that the volume of the pockets and thus the number of lipid acyl chains within them decreases upon channel opening. Phospholipids with one acyl chain per head group (lysolipids) displace normal phospholipids (with two acyl chains) from MscS pockets and trigger channel opening. We propose that the extent of acyl-chain interdigitation in these pockets determines the conformation of MscS. When interdigitation is perturbed by increased membrane tension or by lysolipids, the closed state becomes unstable, and the channel gates.
Topographically complex regions on land and in the oceans feature hotspots of biodiversity that reflect geological influences on ecological and evolutionary processes. Over geologic time, topographic ...diversity gradients wax and wane over millions of years, tracking tectonic or climatic history. Topographic diversity gradients from the present day and the past can result from the generation of species by vicariance or from the accumulation of species from dispersal into a region with strong environmental gradients. Biological and geological approaches must be integrated to test alternative models of diversification along topographic gradients. Reciprocal illumination among phylogenetic, phylogeographic, ecological, paleontological, tectonic, and climatic perspectives is an emerging frontier of biogeographic research.
Topographically complex regions today feature high taxonomic and ecological diversity.
Ancient topographic diversity gradients arose and declined over millions of years.
Paleontological and modern data are crucial to understand topographic diversity gradients.
Topographically complex regions have high conservation value.
Influenza infects 5-15% of the global population each year, and obesity has been shown to be an independent risk factor for increased influenza-related complications including hospitalization and ...death. However, the risk of developing influenza or influenza-like illness (ILI) in a vaccinated obese adult population has not been addressed.
This study evaluated whether obesity was associated with increased risk of influenza and ILI among vaccinated adults.
During the 2013-2014 and 2014-2015 influenza seasons, we recruited 1042 subjects to a prospective observational study of trivalent inactivated influenza vaccine (IIV3) in adults. A total of 1022 subjects completed the study. Assessments of relative risk for laboratory confirmed influenza and ILI were determined based on body mass index. Seroconversion and seroprotection rates were determined using prevaccination and 26-35 days post vaccination serum samples. Recruitment criteria for this study were adults 18 years of age and older receiving the seasonal trivalent inactivated influenza vaccine (IIV3) for the years 2013-2014 and 2014-2015. Exclusion criteria were immunosuppressive diseases, use of immunomodulatory or immunosuppressive drugs, acute febrile illness, history of Guillain-Barre syndrome, use of theophylline preparations or use of warfarin.
Among obese, 9.8% had either confirmed influenza or influenza-like-illness compared with 5.1% of healthy weight participants. Compared with vaccinated healthy weight, obese participants had double the risk of developing influenza or ILI (relative risk=2.01, 95% CI 1.12, 3.60, P=0.020). Seroconversion or seroprotection rates were not different between healthy weight and obese adults with influenza or ILI.
Despite robust serological responses, vaccinated obese adults are twice as likely to develop influenza and ILI compared with healthy weight adults. This finding challenges the current standard for correlates of protection, suggesting use of antibody titers to determine vaccine effectiveness in an obese population may provide misleading information.
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