bluuebunny/crossref_metadata_2025_split huggingface dataset:
Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature
Authors: Smith Joanna , Cheater Francine , Bekker Hilary 
Published: January 2013

AbstractBackgroundLiving with a child with a long‐term condition can result in challenges above usual parenting because of illness‐specific demands. A critical evaluation of research exploring parents' experiences of living with a child with a long‐term condition is timely because international health policy advocates that patients with long‐term conditions become active collaborators in care decisions.MethodsA rapid structured review was undertaken (January 1999–December 2009) in accordance with theUnitedKingdomCentre forReviews andDissemination guidance. Three data bases (MEDLINE,CINAHL,PSYCINFO) were searched and also hand searching of theJournal ofAdvancedNursing andChild:Care,Health andDevelopment. Primary research studies written inEnglish language describing parents' experiences of living with a child with a long‐term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria.ResultsThirty‐four studies met the inclusion criteria. The impact of living with a child with a long‐term condition related to dealing with immediate concerns following the child's diagnosis and responding to the challenges of integrating the child's needs into family life. Parents' perceived they are not always supported in their quest for information and forming effective relationships with health‐care professionals can be stressful. Although having ultimate responsibility for their child's health can be overwhelming, parents developed considerable expertise in managing their child's condition.ConclusionParents' accounts suggest they not always supported in their role as manager for their child's long‐term condition and their expertise, and contribution to care is not always valued.
Self‐care support in paediatric patients with type 1 diabetes: bridging the gap between patient education and health promotion? A review
Authors: Pelicand Julie , Fournier Cécile , Le Rhun Anne , Aujoulat Isabelle 
Published: January 2013

AbstractBackgroundThis study examines how the term ‘self‐care’ imported from health promotion has been used in the context of patient education interventions for paediatric patients with type 1 diabetes.MethodsThirty articles over the last decade were analysed, using a qualitative method of thematic coding and categorizing.ResultsThe term ‘self‐care’ has been mainly used as a synonym for self‐management of one's condition and treatment. Indeed, the activities performed by paediatric patients independently or with the help of their parents under the term ‘self‐care’ fail to explicitly take into account the general health and life dimensions of self‐care, as defined in health promotion. Although such dimensions are implicitly present when it comes to define the parents' and health‐care providers' roles in supporting the children's emerging self‐care capacity, their importance is acknowledged as a way of strengthening the children's and their families' capacity to respond to illness demands, rather than in relation to their general well‐being.ConclusionThe discourse on self‐care in the field of paediatric diabetes therefore appears to be oriented more towards disease and prevention, rather than health promotion. The psychosocial dimension of self‐care should be particularly investigated, as young patients need to be supported in their efforts to gain autonomy not only in relation to the management of their condition, but in their lives in general.
Designing a placebo device: involving service users in clinical trial design
Authors: Gooberman‐Hill Rachael , Jinks Clare , Bouças Sofia Barbosa , Hislop Kelly , Dziedzic Krysia S. , Rhodes Carol , Burston Amanda , Adams Jo 
Published: January 2013

AbstractBackgroundService users are increasingly involved in the design of clinical trials and in product and device development. Service user involvement in placebo development is crucial to a credible and acceptable placebo for clinical trials, but such involvement has not yet been reported.AimsTo enhance the design of a future clinical trial of hand splints for thumb‐base osteoarthritis (OA), service users were involved in splint selection and design of a placebo splint. This article describes and reflects on this process.DesignTwo fora of service users were convened in 2011. Service users who had been prescribed a thumb splint for thumb‐base OA were approached about involvement by Occupational Therapy (OT) practitioners.Content of the foraA total of eight service users took part in the fora. Service users discussed their experience of OA and their own splints and then tried a variety of alternative splints. Through this they identified the active features of splints alongside acceptable and unacceptable design features. Service users focused on wearability and support with or without immobilization. Fora discussed whether a placebo group (‘arm’) was an acceptable feature of a future trial, and service users developed a potential design for a placebo splint.Conclusion and discussionThis is the first project that to involve service users in placebo design. Service users are increasingly involved in product and device design and are ideally placed to identify features to make a placebo credible yet lacking key active ingredients. The future trial will include research into its acceptability.
Optimization of sexual function outcome after radical prostatectomy using phosphodiesterase type 5 inhibitors
Authors: Kaiho Yasuhiro , Yamashita Shinichi , Arai Yoichi 
Published: January 2013

Abstract: Erectile dysfunction after radical prostatectomy is a major complication affecting postoperative quality of life. For early recovery from postoperative erectile dysfunction, attention has focused on penile rehabilitation using vacuum devices, prostaglandin E1 injection into the corpus cavernosum of the penis or transurethral administration, and oral drugs such as phosphodiesterase type 5 inhibitors. Phosphodiesterase type 5 inhibitors have been used clinically based on the results of animal experiments that showed a preventive effect on fibrosis and loss of intracorporeal smooth muscle. Small randomized studies had reported a benefit from penile rehabilitation using phosphodiesterase type 5 inhibitors after radical prostatectomy. However, the largest trial to date, carried out in 2008, failed to show that daily phosphodiesterase type 5 inhibitor treatment was superior to on‐demand phosphodiesterase type 5 inhibitor treatment for erectile function recovery after radical prostatectomy. Thus, debate continues as to its efficacy in humans. Reports on penile rehabilitation using phosphodiesterase type 5 inhibitors have appeared after these negative results, and phosphodiesterase type 5 inhibitors are still widely used as first‐line treatment in penile rehabilitation.
CD8+ CD122+ regulatory T cells contain clonally expanded cells with identical CDR3 sequences of the T‐cell receptor β‐chain
Authors: Okuno Yusuke , Murakoshi Ayako , Negita Masashi , Akane Kazuyuki , Kojima Seiji , Suzuki Haruhiko 
Published: January 2013

SummaryWe identified CD8+ CD122+ regulatory T cells (CD8+ CD122+ Treg cells) and reported their importance in maintaining immune homeostasis. The absence of CD8+ CD122+ Treg cells has been shown to lead to severe systemic autoimmunity in several mouse models, including inflammatory bowel diseases and experimental autoimmune encephalomyelitis. The T‐cell receptors (TCRs) expressed on CD8+ CD122+ Treg cells recognize the target cells to be regulated. To aid in the identification of the target antigen(s) recognized by TCRs of CD8+ CD122+ Treg cells, we compared the TCR diversity of CD8+ CD122+ T cells with that of conventional, naive T cells in mice. We analysed the use of TCR‐Vβ in the interleukin 10‐producing population of CD8+ CD122+ T cells marked by high levels of CD49d expression, and found the significantly increased use of Vβ13 in these cells. Immunoscope analysis of the complementarity‐determining region 3 (CDR3) of the TCR β‐chain revealed remarkable skewing in a pair of Vβ regions, suggesting the existence of clonally expanded cells in CD8+ CD122+ T cells. Clonal expansion in Vβ13+ cells was confirmed by determining the DNA sequences of the CDR3s. The characteristic TCR found in this study is an important building block for further studies to identify the target antigen recognized by CD8+ CD122+ Treg cells.
Epidemiologic study of molar‐incisor hypomineralization in 8‐year‐old Spanish children
Authors: Garcia‐Margarit Miriam , Catalá‐Pizarro Monserrat , Montiel‐Company José María , Almerich‐Silla José Manuel 
Published: January 2013

AimTo find the prevalence of molar‐incisor hypomineralization (MIH) in a random sample of Spanish children, and to investigate the gender influence, distribution of defects, the treatment need associated and the relation between this disorder and dental caries.DesignA cross‐sectional study was carried out to determine MIH and caries prevalence in a randomly selected sample of 840 children from the 8‐year‐old population of the Valencia region of Spain. The examinations were carried out in the children's schools by one examiner who had previously been calibrated with the MIH diagnostic criteria of the European Academy of Paediatric Dentistry (EAPD).ResultsThe percentage of children with MIH was 21.8% (95% CI 19.1–24.7), with a mean 3.5 teeth affected (2.4 molars and 1.1 incisors) been the maxillary molars the most affected. No gender differences were found. Of those with MIH, 56.8% presented lesions in both molars and incisors Children with MIH needed significantly more urgent and non‐urgent treatment than those without MIH (chi‐squared test P‐value < 0.005). Both caries indices were significantly higher (Student's t‐test P‐value < 0.05) in the children with MIH than in the healthy children: the DMFT scores were 0.513 and 0.237 and the DMFS scores 1.20 and 0.79, respectively.ConclusionsMolar‐incisor hypomineralization prevalence is high in the child population of this region and equally affects boys and girls. The condition increases significantly the need of treatment of affected children. A significant association with dental caries was observed.
Association between Intrapartum Interventions and Breastfeeding Duration
Authors: Bai Dorothy Li , Wu Kendra M. , Tarrant Marie 
Published: January 2013

Introduction: Few women who reside in Hong Kong exclusively breastfeed, and one‐half stop breastfeeding within the first few months. There is little research in this population on the association between intrapartum interventions and breastfeeding duration.Methods: A sample of 1280 mother‐infant pairs were recruited from the obstetric units of 4 public hospitals in Hong Kong and followed prospectively for 12 months or until the infant was weaned. The outcome variables for this analysis were the duration of any and exclusive breastfeeding. Predictor variables were 4 intrapartum interventions: receipt of opioid pain medication, induction versus spontaneous labor, epidural administration, and mode of birth. We used Cox proportional hazards modeling to assess the impact of intrapartum interventions on the duration of any and exclusive breastfeeding, and we constructed Kaplan‐Meier survival curves to evaluate the cumulative impact of multiple intrapartum interventions on breastfeeding outcomes.Results: Bivariate analysis showed that induction of labor (hazard ratio [HR], 1.24; 95% confidence interval [CI], 1.09‐1.41), opioid pain medication (HR, 1.21; 95% CI, 1.06‐1.37), and having an emergency cesarean birth (HR, 1.22; 95% CI, 1.01‐1.48) were associated with a shorter duration of any breastfeeding. Induction of labor (HR, 1.23; 95% CI, 1.08‐1.39) and having an emergency cesarean birth (HR, 1.25; 95% CI, 1.05‐1.51) were associated with a shorter duration of exclusive breastfeeding. After controlling for known confounding variables, there was no longer any association between individual intrapartum interventions and the duration of any or exclusive breastfeeding. The median duration of breastfeeding for participants who experienced a natural birth with no intrapartum interventions was 9 weeks compared with 5 weeks for participants who experienced at least 3 intrapartum interventions.Discussion: Clinicians working with new breastfeeding mothers should focus on providing additional support to mothers who experience a difficult labor and birth with multiple interventions to improve their breastfeeding experiences.
Anterior Inferior Cerebellar Artery Aneurysms Mimicking Vestibular Schwannomas
Authors: Marchini Aïda Kawkabani , Mosimann Pascal J , Guichard Jean‐Pierre , Boukobza Monique , Houdart Emmanuel 
Published: January 2013

ABSTRACTBACKGROUND AND PURPOSEUnruptured anterior inferior cerebellar artery (AICA) aneurysms are rare but potentially lethal cerebellopontine angle (CPA) lesions that may be misdiagnosed as vestibular schwannomas when they present with vestibulo‐cochlear symptoms.METHODSWe report two cases of unruptured but symptomatic AICA aneurysms initially referred to us as atypical vestibular schwannomas requiring surgery. Two discriminant MR features are described.RESULTSOne patient refused treatment. The other was successfully treated by coil occlusion.CONCLUSIONSCaution is advised before suspecting a CPA mass to be a purely extra‐canalicular schwannoma, given its extreme rarity. Deafness and cerebellar ischemia may be prevented if AICA aneurysms are correctly identified preoperatively. In the absence of specific arterial imaging, two MR features may distinguish them from vestibular schwannomas: (1) the absence of internal auditory canal enlargement and (2) the “blurry dot sign,” representing blood flow artefacts on pre‐ and postcontrast studies.
No Regional Gray Matter Atrophy Differences between Pediatric‐ and Adult‐Onset Relapsing‐Remitting Multiple Sclerosis
Authors: Donohue Katelyn , Cox Jennifer L. , Dwyer Michael G. , Aliotta Rachel , Corwin Melanie , Weinstock‐Guttman Bianca , Ann Yeh E. , Zivadinov Robert 
Published: January 2013

ABSTRACTOBJECTIVETo investigate differences in region‐specific gray matter (GM) damage between adults with pediatric‐onset (PO) multiple sclerosis (MS) and adult‐onset (AO) MS.METHODSTwenty‐four relapsing‐remitting (RR) adults with POMS (mean age = 35 years, mean disease duration = 18.4 years) were compared to 23 age‐matched (AOA, mean age = 33.9 years, mean disease duration = 2.4 years) and 24 disease‐duration matched (AOD, mean age = 45.9 years, mean disease duration = 18.5 years) RRMS adults who developed MS after the age of 18. Three‐dimensional‐T1‐weighted images were acquired on a 1.5 T MRI. Image analysis was conducted using voxel‐based morphometry (Statistical Parametric Mapping 8).RESULTSThere were no regional GM atrophy differences between POMS and AODMS groups. No regional GM atrophy differences were found between POMS and AOAMS patients when disease duration was included as a covariate.CONCLUSIONSRegional GM differences were not found between POMS adults and MS controls matched for age or disease duration. Although of limited sample size, these findings suggest that there are no regional GM atrophy differences between RR POMS and AOMS.
Computed Tomography and Transcranial Doppler Findings in Acute and Subacute Phases of Intracerebral Hemorrhagic Stroke
Authors: Fülesdi Béla , Réka Kovács Katalin , Bereczki Dániel , Bágyi Péter , Fekete István , Csiba László 
Published: January 2013

ABSTRACTBACKGROUND AND PURPOSEThe hematoma volume is an important determinant of outcome and a predictor of clinical deterioration in patients with intracerebral hemorrhage (ICH). Our goal was to evaluate alterations in the cerebral circulation, in respect to hemorrhage and edema volume changes, using transcranial Doppler (TCD).METHODSTwenty patients with acute supratentorial ICH were examined. Brain, hematoma, and edema volumes were calculated from CT scans performed at admission and 2 weeks later. Data were compared with those obtained from bilateral TCD recordings of the middle cerebral arteries.RESULTSDuring TCD examination, blood flow velocities did not change, cerebral perfusion pressure (CPP) and resistance area product (RAP) decreased (P = .006, P = .002) while cerebral blood flow index (CBFI) remained constant on the affected side. Although hemorrhage volume did not correlate with RAP in the acute phase, correlation was found in the subacute phase (r = −.44, P = .04).CONCLUSIONSTCD monitoring sensitively demonstrates the hemodynamic change caused by ICH but the severity of the changes does not correlate with the volume of the ICH in acute stage. The CPP, RAP, and CBFI values are more sensitive parameters than the absolute velocity values, therefore they contribute more to the understanding of hemodynamic changes developed after spontaneous ICH.
Rural AIDS Diagnoses in Florida: Changing Demographics and Factors Associated With Survival
Authors: Trepka Mary Jo , Niyonsenga Theophile , Maddox Lorene M. , Lieb Spencer 
Published: January 2013

AbstractPurposeTo compare demographic characteristics and predictors of survival of rural residents diagnosed with acquired immunodeficiency syndrome (AIDS) with those of urban residents.MethodsFlorida surveillance data for people diagnosed with AIDS during 1993‐2007 were merged with 2000 Census data using ZIP code tabulation areas (ZCTAs). Rural status was classified based on the ZCTA's rural‐urban commuting area classification. Survival rates were compared between rural and urban areas using survival curves and Cox proportional hazards models controlling for demographic, clinical, and area‐level socioeconomic and health care access factors.FindingsOf the 73,590 people diagnosed with AIDS, 1,991 (2.7%) resided in rural areas. People in the most recent rural cohorts were more likely than those in earlier cohorts to be female, non‐Hispanic black, older, and have a reported transmission mode of heterosexual sex. There were no statistically significant differences in the 3‐, 5‐, or 10‐year survival rates between rural and urban residents. Older age at the time of diagnosis, diagnosis during the 1993‐1995 period, other/unknown transmission mode, and lower CD4 count/percent categories were associated with lower survival in both rural and urban areas. In urban areas only, being non‐Hispanic black or Hispanic, being US born, more poverty, less community social support, and lower physician density were also associated with lower survival.ConclusionsIn rural Florida, the demographic characteristics of people diagnosed with AIDS have been changing, which may necessitate modifications in the delivery of AIDS‐related services. Rural residents diagnosed with AIDS did not have a significant survival disadvantage relative to urban residents.
Behind the Scenes at a Climate Change Knowledge Sharing Network: IDS Insights from Phase One of AfricaAdapt
Authors: Fisher Catherine , Harvey Blane 
Published: January 2013

SummaryKnowledge sharing networks are increasingly recognised as means of mobilising the knowledge and capacities needed to respond to complex and changing realities, such as the challenges posed by climate change. AfricaAdapt is one such network that describes its aim as ‘facilitating the flow of climate change adaptation knowledge for sustainable livelihoods between researchers, policy makers, civil society organisations and communities who are vulnerable to climate variability and change across the [African] continent’. This paper takes a ‘behind the scenes’ look at the AfricaAdapt Network and the partnerships on which it is based and is thus intended to be useful for others seeking to collaboratively develop knowledge sharing networks.We focus on the dynamics of design and implementation of a knowledge sharing network in a distributed partnership, from the perspective of the former lead partner. Rather than looking at the delivery and outcomes of network activities, we explore the way in which the partners sought to develop sustainable relationships and ways of working to underpin the network, areas that are frequently under‐examined, particularly among practitioners. Areas covered include: governance and management, staffing and planning, financial management, partnership dynamics, learning, capacity development, monitoring and evaluation.Although all knowledge sharing networks are different we have tried to identify insights and principles from this specific example that can be adapted and applied in other contexts. We hope that these insights will provide a useful contribution to the broader body of theory and experience around networks and knowledge sharing.
Food Safety, Private Standards Schemes and Trade: The Implications of the FDA Food Safety Modernization Act
Authors: Humphrey John 
Published: January 2013

SummaryFood safety standards for the production of fruit and vegetables that are developed and administered by private sector actors have become a common requirement for producers and exporters of fresh produce in the past two decades. Instead of relying on inspection after produce has been harvested, preventive controls identify sources of food safety risks and introduce procedures to eliminate them or reduce them to acceptable levels. This approach has been criticised for its reliance on controls over the way food is produced and the use of third‐party certification to monitor and enforce compliance. The criticisms frequently imply that public controls over production and trade of fresh produce are less onerous and more science‐based. The FDA Food Safety Modernization Act (FSMA), passed by the US Congress in January 2011, adds a new element to the discussion of private standards. In a radical departure from past practice it introduces mandatory on‐farm preventive controls on US farms for those categories of fresh produce for which the risks to human health from food borne illness outbreaks are considered substantial. Food imported into the United States must be shown to have been produced to an equivalent level of safety, and the responsibility to verify this is placed on food importers. The use of preventive controls backed up by audit and inspection moves US public regulations much closer to the approach used by private standards developers and adopters.This paper compares and contrasts the development of private standards in Europe and the approach developed by the FSMA. It uses the framework of different regulatory strategies – performance‐based, technology‐based and management based – to analyse the regulatory choices made in both cases and their implications for producers and exporters in developing countries. It argues that the adoption of mandatory on‐farm controls by the FSMA reflects the seriousness of microbial contamination of fresh produce as a food safety risk and the shortcomings of performance‐based regulation. The impacts on exporters will be similar to the impact of private standards. The nature of these impacts will depend, first, upon the choice of on‐farm controls by the FDA for domestic production in the United States and the balance between technology‐based and management‐based regulation. The second factor is how the FDA will determine whether private standards and public regulations in exporting countries provide an equivalent level of safety to that in the US.