Understanding children’s experiences of self-wetting in humanitarian contexts: An evaluation of the Story Book methodology

Little is known about how children in humanitarian contexts experience self-wetting. Children can wet themselves due to having the medical condition of urinary incontinence (the involuntary leakage of urine), or due to them not wanting to or not being able to use the toilet facilities available (social or functional incontinence). Self-wetting is a global public health challenge: the physical health of children can suffer; they can miss out on educational and social opportunities; they may face increased protection risks; and the emotional effect on daily life can be significantly negative. The Story Book methodology was developed to facilitate conversations with children aged five to eleven in humanitarian contexts (specifically refugee settlements in Adjumani District, Uganda; and refugee camps in Cox’s Bazar, Bangladesh) about self-wetting to understand how humanitarian professionals can best meet the needs of children that wet themselves. This paper has evaluated how far the Story Book methodology meets the specific requirements of conducting research a) in a humanitarian context; b) with young children; and c) on a personal and highly sensitive topic. Data has been used from Story Book sessions held with children in Adjumani District and Cox’s Bazar, and from semi-structured interviews held with adults known to have participated in the planning and/or facilitation of the sessions. The evaluation found that although the Story Book methodology provided deep insights into how children in humanitarian contexts experience self-wetting, it was not always implemented as designed; it is not practical to implement in humanitarian settings; and it was not acceptable to all participants and facilitators as a research tool. Changes have been recommended to improve the methodology as a research tool to better understand how children experience personal health issues, but even with such changes the methodology will remain better suited to non-humanitarian contexts

PIEZO1-R1864H rare variant accounts for a genetic phenotype-modifier role in dehydrated hereditary stomatocytosis.

phenotype-modifier role in dehydrated hereditary stomatocytosis Dehydrated hereditary stomatocytosis (DHS) is an autosomal dominant hereditary hemolytic anemia characterized by erythrocyte dehydration due to loss of the cation content. Affected subjects exhibit highly variable clinical presentation, ranging from absence of clinical symptoms to lethal perinatal edema. They may present severe iron overload leading to hepatic transplantation, or life-threatening thromboembolic disease after splenectomy, thus making the diagnosis of this condition problematic.1 DHS results in two different forms: i) DHS1, the most frequent, is caused by mutations in PIEZO1, encoding a cation selective channel activated by mechanical force; ii) DHS2 due to an altered KCNN4 gene, encoding a Ca2+-sensitive (Gardos) channel.2-4 In particular, PIEZO1 is a large and highly polymorphic gene. Several electrophysiology studies demonstrated that the mutations cause a gain-of-function phenotype with delayed inactivation of the channel.5-10 We studied 7 DHS patients from two unrelated families (A-B) showing highly variable clinical expressivity and carrying the same new PIEZO1 mutation. We demonstrated that the presence of an additional de novo PIEZO1 rare missense variant in one of the 2 probands accounts for a more severe phenotype

Bumblebee foraging rhythms under the midnight sun measured with radiofrequency identification

<p>Abstract</p> <p>Background</p> <p>In the permanent daylight conditions north of the Arctic circle, there is a unique opportunity for bumblebee foragers to maximise intake, and therefore colony growth, by remaining active during the entire available 24-h period. We tested the foraging rhythms of bumblebee (<it>Bombus terrestris </it>and <it>B. pascuorum</it>) colonies in northern Finland during the summer, when the sun stays above the horizon for weeks. We used fully automatic radio-frequency identification to monitor the foraging activity of more than 1,000 workers and analysed their circadian foraging rhythms.</p> <p>Results</p> <p>Foragers did not use the available 24-h foraging period but exhibited robust diurnal rhythms instead. A mean of 95.2% of the tested <it>B. terrestris </it>workers showed robust diurnal rhythms with a mean period of 23.8 h. Foraging activity took place mainly between 08:00 and 23:00, with only low or almost no activity during the rest of the day. Activity levels increased steadily during the morning, reached a maximum around midday and decreased again during late afternoon and early evening. Foraging patterns of native <it>B. pascuorum </it>followed the same temporal organisation, with the foraging activity being restricted to the period between 06:00 and 22:00.</p> <p>Conclusions</p> <p>The results of the present study indicate that the circadian clock of the foragers must have been entrained by some external cue, the most prominent being daily cycles in light intensity and temperature. Daily fluctuations in the spectral composition of light, especially in the UV range, could also be responsible for synchronising the circadian clock of the foragers under continuous daylight conditions.</p

Histone deacetylase inhibitors: clinical implications for hematological malignancies

Histone modifications have widely been implicated in cancer development and progression and are potentially reversible by drug treatments. The N-terminal tails of each histone extend outward through the DNA strand containing amino acid residues modified by posttranslational acetylation, methylation, and phosphorylation. These modifications change the secondary structure of the histone protein tails in relation to the DNA strands, increasing the distance between DNA and histones, and thus allowing accessibility of transcription factors to gene promoter regions. A large number of HDAC inhibitors have been synthesized in the last few years, most being effective in vitro, inducing cancer cells differentiation or cell death. The majority of the inhibitors are in clinical trials, unlike the suberoylanilide hydroxamic acid, a pan-HDACi, and Romidepsin (FK 228), a class I-selective HDACi, which are only approved in the second line treatment of refractory, persistent or relapsed cutaneous T-cell lymphoma, and active in approximately 150 clinical trials, in monotherapy or in association. Preclinical studies investigated the use of these drugs in clinical practice, as single agents and in combination with chemotherapy, hypomethylating agents, proteasome inhibitors, and MTOR inhibitors, showing a significant effect mostly in hematological malignancies. The aim of this review is to focus on the biological features of these drugs, analyzing the possible mechanism(s) of action and outline an overview on the current use in the clinical practice

Digital ulcers predict a worse disease course in patients with systemic sclerosis

Objective: Systemic sclerosis (SSc) is a systemic autoimmune disease with high morbidity and significant mortality. There is a great need of predictors that would allow risk stratification of patients with SSc and ultimately initiation of treatment early enough to ensure optimal clinical results. In this study, we evaluated whether a history of digital ulcers (HDU) at presentation may be a predictor of vascular outcomes and of overall clinical worsening and death in patients with SSc. Methods: Patients from the EULAR Scleroderma Trials and Research (EUSTAR) database, satisfying at inclusion the 1980 American College of Rheumatology classification criteria for SSc, who had a follow-up of at least 3 years since baseline or who have died, were included in the analysis. HDU at presentation as a predictor of disease worsening or death was evaluated by Cox proportional hazards regression analysis. Results :3196 patients matched the inclusion criteria (male sex 13.2%, 33.4% diffuse subset). At presentation, 1092/3196 patients had an HDU (34.1%). In multivariable analysis adjusting for age, gender and all parameters considered potentially significant, HDU was predictive for the presence of active digital ulcers (DUs) at prospective visits (HR (95% CI)): 2.41(1.91 to 3.03), p&lt;0.001, for an elevated systolic pulmonary arterial pressure on heart ultrasound (US-PAPs):1.36 (1.03 to 1.80), p=0.032, for any cardiovascular event (new DUs, elevated US-PAPs or LV failure):3.56 (2.26 to 5.62), p&lt;0.001, and for death (1.53 (1.16 to 2.02), p=0.003). Conclusions :In patients with SSc, HDU at presentation predicts the occurrence of DUs at follow-up and is associated with cardiovascular worsening and decreased survival

Urinary incontinence in children aged 5 to 12 in an emergency setting: lessons learned in Ethiopia

This scoping study aimed to be the first to explore the number of children aged 5 to 12 in an emergency setting (Tukaley village, Ethiopia) wetting themselves, and demand for support to manage self-wetting in the home. A survey asked 524 children about their latrine behaviours; and 312 adult caregivers about the latrine behaviours of the children aged 5 to 12 they care for. Few adult caregivers (1 per cent) indicated that children were self-wetting during the day and/or night, and only one child indicated self-wetting (during the day). Yet the survey revealed demand from adult caregivers for household items typically used to manage involuntary self-wetting. This could suggest self-wetting is occurring, but there is a reluctance to disclose it. Given the impact of self-wetting on the lives of children and their adult caregivers, it would be unethical for it not to be considered when developing emergency programmes across sectors including the water, sanitation, and hygiene sector. With further research and modifications to the survey, it could provide greater clarity on the number of children self-wetting and the scale of demand for support to inform emergency programme design

Compliance with clinical practice guidelines for breast cancer treatment: a population-based study of quality-of-care indicators in Italy

<p>Abstract</p> <p>Background</p> <p>It has been documented that variations exist in breast cancer treatment despite wide dissemination of clinical practice guidelines. The aim of this population-based study was to evaluate the impact of regional guidelines (Piedmont guidelines, PGL) for breast cancer diagnosis and treatment on quality-of-care indicators in the Northwestern Italian region of Piedmont.</p> <p>Methods</p> <p>We included two samples of women aged 50–69 years with incident breast cancer treated in Piedmont before and after the introduction of PGL: 600 in 2002 (pre-PGL) and 621 in 2004 (post-PGL). Patients were randomly selected among all incident breast cancer cases identified through the hospital discharge records database. We extracted clinical data on breast cancer cases from medical charts and ascertained vital status through linkage with town offices. We assessed compliance with 14 quality-of-care indicators from PGL recommendations, before and after their introduction in clinical practice.</p> <p>Results</p> <p>Among patients with invasive lesions, 77.1% (N = 368) and 77.5% (N = 383) in the pre-PGL and post-PGL groups, respectively, received breast conservative surgery (BCS) as a first-line treatment. Following BCS, 87.7% received radiotherapy in 2002, compared to 87.9% in 2004. Of all patients at medium-to-high risk of distant metastasis, 65.5% (N = 268) and 63.6% (N = 252) received chemotherapy in 2002 and in 2004, respectively. Among the 117 patients with invasive lesions and negative estrogen receptor status in 2002, hormonal therapy was prescribed in 23 of them (19.6%). The incorrect prescription of hormonal therapy decreased to 10.8% (N = 10) among the 92 estrogen receptor-negative patients in 2004 (p < 0.01).</p> <p>Compliance with PGL recommendations was already high in the pre-PGL group, although some quality-of-care indicators did not reach the standard. In the pre/post analysis, 8 out of 14 quality-of-care indicators showed an improvement from 2002 to 2004, but only 4 out of 14 reached statistical significance. We did not find any change in the risk of mortality in the post-PGL <it>versus</it> the pre-PGL group (adjusted hazard ratio 0.94, 95%CI 0.56–1.56).</p> <p>Conclusions</p> <p>These results highlight the need to continue to improve breast cancer care and to measure adherence to PGL.</p