Advocating for a patient‐ and family centered care approach to management of short bowel syndrome

Patient‐ and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This partnership is critical in short bowel syndrome (SBS) management since the condition is rare, chronic, involves a heterogenous population, and calls for a personalized approach to care. Institutions can facilitate the practice of PFCC by supporting a teamwork approach to care, which, in the case of SBS, ideally involves a comprehensive intestinal rehabilitation program consisting of qualified healthcare practitioners who are supported with the necessary resources and budget. Clinicians can engage in a range of processes to center patients and families in the management of SBS, including fostering whole‐person care, building partnerships with patients and families, cultivating communication, and providing information effectively. Empowering patients to self‐manage important aspects of their condition is an important component of PFCC and can enhance coping to chronic disease. Therapy nonadherence represents a breakdown in the PFCC approach to care, especially when nonadherence is sustained, and the healthcare provider is intentionally misled. An individualized approach to care that incorporates patient/family priorities should ultimately enhance therapy adherence. Lastly, patients/families should play a central role in determining meaningful outcomes as it relates to PFCC and shaping the research that affects them. This review highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes

Advocating for a patient‐ and family centered care approach to management of short bowel syndrome

Patient‐ and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This partnership is critical in short bowel syndrome (SBS) management since the condition is rare, chronic, involves a heterogenous population, and calls for a personalized approach to care. Institutions can facilitate the practice of PFCC by supporting a teamwork approach to care, which, in the case of SBS, ideally involves a comprehensive intestinal rehabilitation program consisting of qualified healthcare practitioners who are supported with the necessary resources and budget. Clinicians can engage in a range of processes to center patients and families in the management of SBS, including fostering whole‐person care, building partnerships with patients and families, cultivating communication, and providing information effectively. Empowering patients to self‐manage important aspects of their condition is an important component of PFCC and can enhance coping to chronic disease. Therapy nonadherence represents a breakdown in the PFCC approach to care, especially when nonadherence is sustained, and the healthcare provider is intentionally misled. An individualized approach to care that incorporates patient/family priorities should ultimately enhance therapy adherence. Lastly, patients/families should play a central role in determining meaningful outcomes as it relates to PFCC and shaping the research that affects them. This review highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes

Transcription Factors Mediate the Enzymatic Disassembly of Promoter-Bound 7SK snRNP to Locally Recruit P-TEFb for Transcription Elongation

SummaryThe transition from transcription initiation into elongation is controlled by transcription factors, which recruit positive transcription elongation factor b (P-TEFb) to promoters to phosphorylate RNA polymerase II. A fraction of P-TEFb is recruited as part of the inhibitory 7SK small nuclear ribonucleoprotein particle (snRNP), which inactivates the kinase and prevents elongation. However, it is unclear how P-TEFb is captured from the promoter-bound 7SK snRNP to activate elongation. Here, we describe a mechanism by which transcription factors mediate the enzymatic release of P-TEFb from the 7SK snRNP at promoters to trigger activation in a gene-specific manner. We demonstrate that Tat recruits PPM1G/PP2Cγ to locally disassemble P-TEFb from the 7SK snRNP at the HIV promoter via dephosphorylation of the kinase T loop. Similar to Tat, nuclear factor (NF)-κB recruits PPM1G in a stimulus-dependent manner to activate elongation at inflammatory-responsive genes. Recruitment of PPM1G to promoter-assembled 7SK snRNP provides a paradigm for rapid gene activation through transcriptional pause release

Evaluation of screening efficacy of IL6, IL8, CRP and salivary progesterone in predicting preterm pregnancy

Background: According to WHO preterm birth defined as births occurring before completion of 37 weeks, in a pregnancy beyond 20 weeks of gestation. As reported by W.H. O preterm birth has incidence of about 9.6% of all the live births, preterm births have high neonatal morbidity and mortality. In this review we look at association between CRP, IL6, IL8 and salivary progesterone in predicting the preterm delivery. Methods: A hospital based prospective study to be conducted in a group of 100 women of 20- 24 weeks of gestation, they were analysed for IL6, IL8, CRP and salivary progesterone and followed them till delivery. Results: On assessment of the biomarkers to predict the preterm and term pregnancy, we assessed for the blood level of CRP, IL6, IL8 and salivary progesterone among the pregnant women at 20-24 weeks of gestation and followed till the pregnancy outcomes. Among which 46% were with preterm pregnancy and 54% with term pregnancy during delivery. Among them, 20% had the previous preterm pregnancy and 80% were not. We found 70% with normal vaginal delivery, 24% with emergency LSCS and 6% with elective LSCS. Conclusions: The present study documented the significant higher efficacy of IL6, IL8, CRP and salivary progesterone in predicting the preterm pregnancy. Progesterone levels in the saliva was markedly lower among the pregnancy with preterm delivery compared to term delivery outcome. The fetal outcome among the preterm delivery was significantly with morbidity and mortality compared to term delivery. The ROC curve showed the estimation of IL6, IL8, CRP and salivary progesterone at 20-24 weeks of gestation can predict the outcome of preterm pregnancy

Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied. Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed‐methods analysis of how individual items impacted parent well‐being. Results: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). Conclusion: The impact of a child\u27s SBS on parent well‐being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well‐being is a necessary first step for developing targeted interventions to support parents and provide family‐centered care

Exploring the impact of pediatric short bowel syndrome on parent well‐being using a disease‐specific pilot survey

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health‐related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied. Methods: A pilot survey was developed using a community‐driven research design to measure the impact of disease‐specific items on parent‐perceived well‐being. The cross‐sectional survey, which included both closed‐ended and open‐ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed‐methods analysis of how individual items impacted parent well‐being. Results: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). Conclusion: The impact of a child\u27s SBS on parent well‐being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well‐being is a necessary first step for developing targeted interventions to support parents and provide family‐centered care

Combined Targeting of Pathogenetic Mechanisms in Pancreatic Neuroendocrine Tumors Elicits Synergistic Antitumor Effects

Buparlisib; Combination therapy; Primary human tumoroidsBuparlisib; Terapia de combinación; Tumoroides humanos primariosBuparlisib; Teràpia combinada; Tumoroides humans primarisPancreatic neuroendocrine neoplasms (PanNENs) are the second most common malignancy of the pancreas. Surgery remains the only curative treatment for localized disease. For patients with inoperable advanced or metastatic disease, few targeted therapies are available, but their efficacy is unpredictable and variable. Exploiting prior knowledge on pathogenetic processes involved in PanNEN tumorigenesis, we tested buparlisib (PI3K inhibitor) and ribociclib (CDK4/6 inhibitor), as single agents or in combination, in different preclinical models. First, we used cell lines representative of well-differentiated (INS-1E, NT-3) and poorly differentiated (BON-1) PanNENs. The combination of buparlisib with ribociclib reduced the proliferation of 2D and 3D spheroid cultures more potently than the individual drugs. Buparlisib, but not ribociclib, induced apoptosis. The anti-proliferative activity of the drugs correlated with downstream target inhibition at mRNA and protein levels. We then tested the drugs on primary islet microtissues from a genetic PanNET animal model (Men1-defective mice) and from wild-type mice: the drug combination was effective against the former without altering islet cell physiology. Finally, we treated PanNET patient-derived islet-like 3D tumoroids: the combination of buparlisib with ribociclib was effective in three out of four samples. Combined targeting of PI3K and CDK4/6 is a promising strategy for PanNENs spanning various molecular and histo-pathological features.This work was supported by the German Research Foundation (Deutsche Forschungsgemeinschaft-DFG) within the CRC/Transregio 205/2, project number 314061271-TRR 205 (to NSP); and by the Deutsche Krebshilfe (# 70113629 to NSP). Ilaria Marinoni was supported by Wilhelm Sander Stiftung (# 2017.073.2). Aurel Perren was supported by the Swiss Cancer Research Foundation (KFS-4227-08-2017)

Planetoid strings : solutions and perturbations

A novel ansatz for solving the string equations of motion and constraints in generic curved backgrounds, namely the planetoid ansatz, was proposed recently by some authors. We construct several specific examples of planetoid strings in curved backgrounds which include Lorentzian wormholes, spherical Rindler spacetime and the 2+1 dimensional black hole. A semiclassical quantisation is performed and the Regge relations for the planetoids are obtained. The general equations for the study of small perturbations about these solutions are written down using the standard, manifestly covariant formalism. Applications to special cases such as those of planetoid strings in Minkowski and spherical Rindler spacetimes are also presented.Comment: 24 pages (including two figures), RevTex, expanded and figures adde

The LOINC RSNA radiology playbook - a unified terminology for radiology procedures

Objective: This paper describes the unified LOINC/RSNA Radiology Playbook and the process by which it was produced. Methods: The Regenstrief Institute and the Radiological Society of North America (RSNA) developed a unification plan consisting of six objectives 1) develop a unified model for radiology procedure names that represents the attributes with an extensible set of values, 2) transform existing LOINC procedure codes into the unified model representation, 3) create a mapping between all the attribute values used in the unified model as coded in LOINC (ie, LOINC Parts) and their equivalent concepts in RadLex, 4) create a mapping between the existing procedure codes in the RadLex Core Playbook and the corresponding codes in LOINC, 5) develop a single integrated governance process for managing the unified terminology, and 6) publicly distribute the terminology artifacts. Results: We developed a unified model and instantiated it in a new LOINC release artifact that contains the LOINC codes and display name (ie LONG_COMMON_NAME) for each procedure, mappings between LOINC and the RSNA Playbook at the procedure code level, and connections between procedure terms and their attribute values that are expressed as LOINC Parts and RadLex IDs. We transformed all the existing LOINC content into the new model and publicly distributed it in standard releases. The organizations have also developed a joint governance process for ongoing maintenance of the terminology. Conclusions: The LOINC/RSNA Radiology Playbook provides a universal terminology standard for radiology orders and results

PRODOC: a resource for the comparison of tethered protein domain architectures with in-built information on remotely related domain families

PROtein Domain Organization and Comparison (PRODOC) comprises several programs that enable convenient comparison of proteins as a sequence of domains. The in-built dataset currently consists of ∼698 000 proteins from 192 organisms with complete genomic data, and all the SWISSPROT proteins obtained from the Pfam database. All the entries in PRODOC are represented as a sequence of functional domains, assigned using hidden Markov models, instead of as a sequence of amino acids. On average 69% of the proteins in the proteomes and 49% of the residues are covered by functional domain assignments. Software tools allow the user to query the dataset with a sequence of domains and identify proteins with the same or a jumbled or circularly permuted arrangement of domains. As it is proposed that proteins with jumbled or the same domain sequences have similar functions, this search tool is useful in assigning the overall function of a multi-domain protein. Unique features of PRODOC include the generation of alignments between multi-domain proteins on the basis of the sequence of domains and in-built information on distantly related domain families forming superfamilies. It is also possible using PRODOC to identify domain sharing and gene fusion events across organisms. An exhaustive genome–genome comparison tool in PRODOC also enables the detection of successive domain sharing and domain fusion events across two organisms. The tool permits the identification of gene clusters involved in similar biological processes in two closely related organisms. The URL for PRODOC is