bluuebunny/crossref_metadata_2025_split huggingface dataset:
Enhancing representativeness of patient-reported outcomes in routine radiation oncology care: a quality improvement protocol to address non-response
Authors: Zeng Chengbo , Martin Neil E , Pusic Andrea L , Edelen Maria O , Liu Jason B 
Published: December 2024

IntroductionNon-response significantly undermines the representativeness of patient-reported outcome (PRO) data, thereby compromising its utility for facilitating high-value, equitable, patient-centred care in cancer clinics. Quality improvement studies are needed to assess the representativeness of PRO data collected in routine care, identify the underlying causes of non-response and develop novel methods to ensure data representativeness. Using a multilevel framework and a mixed-methods approach, we have three aims: (1) characterise the non-response of the Global-10 across clinic, provider and patient levels; (2) identify multilevel causes of non-response and potential strategies to improve representativeness in PRO collection; and (3) develop effective modifications to missing-data methods to enhance the representativeness of pre-existing PRO data.Methods and analysisOur primary data source is the Patient Reported Outcomes Measurement Information System Global-10, collected as part of routine care at the Radiation Oncology clinics within the Mass General Brigham (MGB) healthcare system. Other sources include (1) Harvard Catalyst for provider-specific data, (2) MGB administrative data, (3) public Centers for Medicare & Medicaid Services data and (4) the National Plan and Provider Enumeration System. We will conduct quantitative analyses to assess variations in Global-10 non-response across multilevel factors. Additionally, we will use qualitative interviews with patients and clinical professionals to understand the causes of non-response and to formulate strategies to expand the reach of PRO collection to underrepresented cancer patients, improve their completions and enhance overall data representativeness. Finally, we will integrate implementation science knowledge and findings from the first two aims into missing-data methods to manage non-response in the pre-existing Global-10 data and to evaluate their performance in preserving representativeness.Ethics and disseminationThe study protocol was reviewed and approved by the Institutional Review Board at the Dana-Farber/Harvard Cancer Center (24-225). Written informed consent will be obtained from participants. Study findings will be disseminated through peer-reviewed publications and presentations at national and international conferences.
Influence of demographic, socioeconomic and geographical variability on children under-five mortality in The Gambia: an application of survival analysis
Authors: Barrow Amadou , Nget Musa , Jammeh Modou Lamin , Ceesay Ramatoulie M , Jawara Fatou Jankeh , Sillah Sheikh Omar 
Published: December 2024

BackgroundThere has been a notable decline in child mortality globally, yet Gambia continues to face a high mortality rate among children under five, which poses a serious public health challenge. This research delves into the differences in demographic, socioeconomic and geographic aspects that affect the survival rates of children under five in The Gambia.MethodsIn this study, a retrospective cross-sectional approach was adopted, which is quantitative. The researchers used data from the Gambia Demographic Health Survey conducted in 2019–2020. To analyse the impact of demographic, socioeconomic and geographical factors on the survival of children under 5 years of age in The Gambia, we applied Kaplan-Meier survival estimates along with the Cox proportional hazards model.ResultsThe weighted under-five mortality (U5M) rate was 52 per 1000 live births. Our Kaplan-Meier survival estimates illustrate that most under-five mortalities occur within the first 48–60 months after birth, with children from the poorest families facing the highest risk. Conversely, children from the wealthiest families are least affected by geographical regions and the household wealth index. At the multivariable level, the results suggest that fathers with secondary education levels had 36% (HR=0.64; 95% CI 0.42 to 0.97) lower risk of U5M than those with tertiary educational levels. Among the eight regions, Janjanbureh (HR=1.93; 95% CI 1.02 to 3.63), Kuntaur (HR=2.13; 95% CI 1.13 to 4.03) and Mansakonko (HR=1.96; 95% CI 1.03 to 3.74) reported higher risks of U5M compared with those from Banjul after controlling for confounders.ConclusionThe research highlights considerable differences based on demographics, socioeconomic conditions and geography in the mortality rates among children under five in The Gambia. This underscores the urgent need for specific strategies targeting the most at-risk areas and socioeconomic groups to improve child survival outcomes.
Lessons from a crisis: occupational stress in healthcare workers in an acute paediatric teaching hospital in Ireland
Authors: Ward Shay , Donohue Gráinne , Murray Johanna , McNicholas Fiona 
Published: December 2024

BackgroundThe COVID-19 pandemic placed increased pressure on service provision and healthcare worker (HCW) wellness. As the crisis of the pandemic receded, paediatric healthcare staff required an appropriate response to facilitate individual and organisational recovery, to minimise long-term HCW burn-out and to be better equipped for future crisis in paediatric healthcare.ObjectiveTo explore the experiences of HCWs working during the COVID-19 pandemic in an acute paediatric hospital to determine an appropriate leadership response in the postcrisis work environment.MethodsQualitative research design using responses from open-ended questions from 133 clinical and non-clinical staff (89% clinical) from an Irish paediatric teaching hospital. Responses were thematically analysed.ResultsPaediatric HCWs experienced frustration, uncertainty, anxiety and stress, during the pandemic crisis. Perceived organisational contributors included communication inconsistencies, inadequate support and resources, including staff shortages. This exposed remaining staff to high risk for long-term burn-out as the pandemic recedes. Three themes were developed detailing this: support, communication and trust.ConclusionThis research supports the long-standing need to increase mental health service investment and to implement an appropriate response to regain and maintain a healthy workforce, post-COVID-19. The organisational response should address the biopsychosocial needs of the individual and paediatric healthcare organisations should work dynamically, creatively and collaboratively to ensure the psychological safety of their workforce.
Towards a definition of refractory/therapy-resistant/intractable constipation in children: a cross-sectional, questionnaire-based, online survey
Authors: Gordon Morris , Hathagoda Wathsala , Rajindrajith Shaman , Sinopoulou Vassiliki , Abdulshafea Mansour , Velasco Carlos , Tabbers Merit , Benninga Marc A 
Published: December 2024

BackgroundThe Rome criteria define childhood functional constipation but do not address refractory constipation. Attempts to define refractory constipation lack consensus. The interchangeable use of ‘refractory’ and ‘intractable’ or ‘therapy-resistant’ constipation and lack of understanding of the therapeutic ceilings before this diagnosis complicates the definition.AimTo conduct an online cross-sectional study among medical professionals and researchers across a range of countries, to propose a consensus definition, terminology and duration of medically unresponsive constipation.MethodAn expert-designed questionnaire was disseminated via Google Forms in a two-stage study over 2 months targeting paediatric gastroenterology professionals globally and Latin American clinicians with a translated version. The questionnaire had seven critical questions containing details needed to define medically unresponsive constipation. The study protocol was approved by the ethics review panel.ResultsThe survey involved 1079 participants: 87 from various countries in the first phase and 992 from Latin America in the second. There were 619 (57.3%) general paediatricians and 462 (43 %) paediatric gastroenterologists. The preferred term to indicate poorly responding constipation was ‘therapy-resistant constipation’ (47.8%), followed by ‘refractory constipation’ (43.6%). The majority of respondents (92.9%) agreed on considering a time frame for defining refractory constipation, with 37.7% suggesting 2–3 months. 467 (43.2%) recommended including failure despite maximum laxative therapy with two agents should be considered as previous therapy failure. Compliance with therapy was deemed essential for successful treatment by 91.1%, assessed through detailed history-taking (47.4%) or medical/pharmacy records (29.4%).ConclusionBased on the professional views collected in this study, we propose the term ‘therapy-resistant constipation’ and it can be defined as constipation that is not responding to a maximum dose of at least two laxatives of different classes for a minimum of 3 months with good compliance in a secondary or tertiary care facility.
Prevalence and predictors of parental distress at the communication of positivity at newborn screening for metabolic diseases: an Italian longitudinal study
Authors: Bani Marco , Russo Selena , Gasperini Serena , Crescitelli Viola , Menni Francesca , Furlan Francesca , Tagliaferri Francesco , Cefalo Graziella , Paci Sabrina , Banderali Giuseppe , Marchisio Paola , Biondi Andrea , Strepparava Maria Grazia 
Published: December 2024

BackgroundReceiving communication of positivity for metabolic diseases at Expanded Newborn Screening can be extremely stressful for parents, both in case of false positive and true positive cases. However, little is known about the predictors of distress and differential impact on mothers and fathers.MethodsIn this longitudinal study, 169 fathers and 171 mothers referred to one of the Italian metabolic centres for communication of positivity completed a survey including General Health Questionnaire-12, Emotion Thermometers (measuring stress, anxiety, depression, anger and need for help), Impact of Event Scale–Revised, Multidimensional Scale of Perceived Social Support and Emotion Regulation Questionnaire. Perceived severity and control of the children’s health were also assessed. The survey was completed in person after the first session at metabolic centres and online after 1, 3 and 6 months.ResultsNearly 80% of parents reported a clinical level of distress and anxiety after the communication of positivity, one-third of them reported post-traumatic symptoms and more than half of parents reported a need for help. After 6 months, there are still more than 30% of parents with a clinical level of distress and anxiety, 6% with post-traumatic symptoms and more than 20% who continue to express a need for help. No gender difference was reported and no differences emerged between pre-COVID-19 and post-COVID-19 periods for parental distress and post-traumatic symptoms.Social support, perceived severity and control of the child’s health—but not gender or previous parental experience—predicted the post-traumatic symptoms at baseline while at 6 months the only significant predictor was perceived severity.ConclusionAdequate psychological support should be provided from the initial communication for both parents and for true positive, false positive and variants of uncertain significance/heterozygous carrier cases.
Nabilone for the treatment of gastrointestinal dystonia for children and young people with severe neurodisabilities: a single-centre case series
Authors: Brooks Michelle , Symonds Joseph , Poole Rebecca , Fraser Simon , Bremner Sarah , Flynn Diana , Andrews James , Walker Gregor , Forrest Katharine , Orr Valerie , Barclay Andrew R 
Published: December 2024

BackgroundFor children and young people with severe neurodisabling conditions (CYPSND), the clinical constellation of pain behaviour, retching, bloating, abdominal distension and constipation/pseudo-obstruction can be referred to as gastrointestinal dystonia (GID). Nabilone, a synthetic analogue of the active component tetrahydrocannabinol found in cannabis, has a licence in paediatrics for the treatment of severe chemotherapy-induced nausea. We aim to describe our experience of using nabilone for CYPSND with GID.MethodsApproval was sought on a named patient basis from the clinical directorate and lead pharmacist on the basis that; patients fulfilled our criteria for GID, patients had been trialled on medical therapies, jejunal feeding and blended diet, concomitant medication reviewed in multidisciplinary team including tone management and to review potential exacerbants to GID. Patients were admitted for 48 hours for monitoring of temperature, pulse, respiratory rate, oxygen saturations and symptoms using a modified paediatric pain score. Nabilone was commenced at 250 µg daily and then incremented in 250 µg doses to a dosage of <18 kg: 500 µg two times per day and 18–27 kg: 500 µg three times a day. Efficacy was assessed by parents’ and clinicians’ perception, PedsQL V.3.0 (gastrointestinal subset questions) and sleep diary, prior to treatment, 1 month and 6 months after stable dose, and median scores were analysed by paired Student’s t-test (p<0.05).ResultsIn four of five suitable patients, the PedsQL score was higher after commencing treatment and there was a sustained improvement at 6 months. Patient median total PedsQL Quality of Life (QOL) scores were 46 (28–50) prior to treatment and 68.5 (58–74) 1 month after commencing treatment (p=0.032.) After 6 months, the median PedsQL QOL score was 73 (51–82) (p=0.017.)ConclusionsNabilone shows promise in treating GID, a poorly understood debilitating complication of severe neurodisability. In particular, symptoms of nausea, retching and pain on feeding were all reduced in our cohort.
Sustained response to guselkumab regardless of baseline characteristics in patients with active psoriatic arthritis and inadequate response to TNF inhibitors: results from the phase 3b COSMOS clinical trial
Authors: McInnes Iain B , Sewerin Philipp , Sharaf Mohamed , Efficace Michela , Lavie Frédéric , Zimmermann Miriam , Coates Laura C 
Published: December 2024

ObjectivesTo prospectively evaluate the effect of guselkumab through 48 weeks across various clinical outcomes in subgroups of patients with psoriatic arthritis (PsA) and inadequate response to tumour necrosis factor inhibitors (TNFi-IR) from the phase 3b COSMOS trial. Subgroups were defined by baseline demographics, disease characteristics and prior/ongoing therapies.MethodsPatients with active PsA (tender joint count (TJC) and swollen joint count (SJC) both ≥3) and TNFi-IR were randomised 2:1 to receive guselkumab 100 mg at week 0, week 4, then every 8 weeks through week 44 or to placebo with cross-over to guselkumab 100 mg at week 16 (early escape) or week 24 (planned). Guselkumab effect on joints (American College of Rheumatology (ACR) 20/50/70, enthesitis, dactylitis), skin (Psoriasis Area and Severity Index 90/100, Investigator’s Global Assessment 0/1), patient-reported outcomes (PROs) (Functional Assessment of Chronic Illness Therapy–Fatigue, Health Assessment Questionnaire–Disability Index) and composite outcome measures (PsA Disease Activity Score low disease activity, minimal disease activity) were evaluated by baseline patient age, sex, body mass index, SJC, TJC, PsA duration, %body surface area, C reactive protein, pain Visual Analogue Scale, number of prior TNFi and discontinuation reason, and conventional synthetic disease-modifying antirheumatic drug status. Results are descriptive only.ResultsBaseline characteristics were similar between guselkumab (n=189) and placebo (n=96) groups. The benefit of guselkumab over placebo in achieving ACR 20 (primary endpoint; 50% vs 28%) and ACR 50 (23% vs 8%) response at week 24 was observed within all subgroups. Furthermore, response rates in the guselkumab group increased between week 24 and week 48 within almost all subgroups. Similar response patterns at week 24 and through week 48 were observed across various clinical outcomes.ConclusionsGuselkumab every 8 weeks led to consistent improvements through week 24 in joint, skin, PRO and composite outcomes versus placebo across diverse baseline-defined subgroups of TNFi-IR patients with PsA. Response rates increased or were durable through week 48 within most subgroups.
Using trauma video review to search for the Goldilocks pre-activation time
Authors: Rastegar Ella Rose , Görgens Sophia , Beltran del Rio Manuel , Nilsson Sjolander Elizabeth , Landers Joseph , Meyer Cristy , Rolston Daniel , Klein Eric , Sfakianos Maria , Bank Matthew , Jafari Daniel 
Published: December 2024

ObjectivesWe sought to determine the optimal time to pre-activation for trauma team activation that resulted in maximum team efficiency, measured by the time to complete critical actions (TCCAs) during resuscitation. We hypothesized that there exists a time window for trauma team pre-activation that minimizes TCCA.MethodsThis is an exploratory retrospective analysis of video-reviewed traumas at a level 1 trauma center from January 1, 2018 to 28 February, 2022 that received the highest trauma team activation and had a pre-arrival notification. A total of 11 TCCA categories were calculated using video timestamps. To compare TCCAs from different categories, normalized TCCAs (nTCCAs) were calculated by dividing each TCCA by the median time of its category. Pre-activation times were categorized into three groups: long pre-activation (≥8 min), mid pre-activation (≥4 and ≤7 min), and short pre-activation (≥0 and ≤4).ResultsThere were 466 video-recorded level 1 trauma activations, which resulted in 2334 TCCAs. Of the 466 activations, 152 occured on the patient’s arrival (0 min pre-activation). The majority (425) of patients had a pre-activation time of <7 min. Pre-activation of 4–6 min resulted in all but blood transfusion TCCAs being <15 min. Furthermore, mid pre-activation category corresponded to the most efficient trauma teams, with nTCCAs significantly shorter (median=0.75 (IQR 0.3–1.3)) than long (median=1 (IQR 0.6–2)) or short activation groups (median=1 (IQR 0.6–1.6)). A greater proportion of nTCCAs were shorter than their category median in the mid pre-activation category compared with long and short categories (59.1% vs 48.3% and 40%, respectively; p<0.01).ConclusionsIn this exploratory study, a pre-activation time of 4–7 min is associated with the best team efficiency as measured by TCCAs during trauma team activations. This timeframe may be an optimal window for trauma team activations but needs prospective and external validation.Level of evidenceLevel 4 retrospective exploratory study
POMACS V8, N3, December 2024 Editorial
Authors: Oh Sewoong , Sitaraman Ramesh K. , Van Houdt Benny 
Published: December 2024

The Proceedings of the ACM on Measurement and Analysis of Computing Systems (POMACS) focuses on the measurement and performance evaluation of computer systems and operates in close collaboration with the ACM Special Interest Group SIGMETRICS. All papers in this issue of POMACS will be presented at the ACM SIGMETRICS 2025 conference on June 9-13, 2025, in Stony Brook, New York, USA.
The papers in this issue were selected during the summer submission round by the 93 members of the ACM SIGMETRICS 2025 program committee via a rigorous review process. Each paper was conditionally accepted (and shepherded), or allowed to be resubmitted to one of the subsequent two SIGMETRICS deadlines, or rejected (with resubmission allowed only after a year).
POMACS is publishing 20 papers out of 110 submissions in this issue, of which 3 had previously received a one-shot revision decision. Submissions typically receive at least three reviews. While most papers were decided in the online discussion phase, borderline cases were extensively discussed during the online program committee meeting. Based on the indicated track(s), roughly 18% of the submissions were in the Theory track, 39% were in the Measurement & Applied Modeling track, 27% were in the Systems track, and 16% were in the Learning track.
Many individuals contributed to the success of this issue of POMACS. We thank the authors, who submitted their best work to SIGMETRICS/POMACS. We would also like to thank the program committee members who provided constructive feedback in their reviews to authors and participated in the online discussions and program committee meeting. Further, we thank the several external reviewers who provided their expert opinions on specific submissions that required additional input. Finally, we are also grateful to the ACM SIGMETRICS Chair, Mor Harchol-Balter, to the SIGMETRICS Organization Committee and to the SIGMETRICS Executive Committee for their ongoing efforts and initiatives for creating an exciting program for ACM SIGMETRICS 2025.
Next-Generation Sequencing–Based MSI Scoring Predicts Benefit in Mismatch Repair–Deficient Tumors Treated with Nivolumab: Follow-up on NCI-MATCH Arm Z1D
Authors: Schoenfeld Jonathan D. , Azad Nilofer S. , Gross Jacob , Chen Li , Overman Michael J. , Kao Katrina , Jackson Latifa , Brunnquell Donna , Bu Xiangning , Coppola Christina , Guan Ping , Lee Jennifer , Sims David , Fuchs Rebecca , Weirather Jason L. , Pfaff Kathleen L. , Gunasti Lauren , Ranasinghe Srin , Hamilton Stanley R. , Wang Victoria , O’Dwyer Peter J. , Wu Catherine J. , Rodig Scott J. , Patton David R. , Harris Lyndsay 
Published: December 2024

Abstract

Purpose:
Mismatch repair–deficient (dMMR) tumors have demonstrated favorable responses to immune checkpoint inhibition targeting PD-1. However, more in-depth identification of predictors of response could further refine patient selection for immunotherapy treatment.

Patients and Methods:
We undertook integrated evaluation performed on samples collected from 28 of 42 patients enrolled on the NCI–Molecular Analysis for Therapy Choice arm Z1D trial that evaluated PD-1 inhibition treatment with nivolumab in patients with noncolorectal dMMR tumors. Genomic analyses were performed using next-generation sequencing (NGS), whole-exome sequencing, and RNA sequencing and supplemented by multiplex immunofluorescence performed on tissue samples.

Results:
In this dMMR population, more extensive alterations of microsatellites as assessed by measures of NGS were associated with clinical benefit and tumor mutational burden. RNA sequencing further revealed associations between clinical benefit and immune infiltration index. Gene sets enriched in patients with clinical benefit included IFN signaling, antigen processing, and PI3K–AKT–mTOR signaling, whereas hedgehog signaling was found to be enriched in subjects lacking clinical benefit.

Conclusions:
These genomic data highlight the importance of immune infiltration and antigen presentation in dMMR tumors that respond to immune checkpoint blockade. In addition, they suggest that, even within a dMMR population, NGS-based measures of microsatellite instability could serve as biomarkers of immunotherapy response.
Informal Intergovernmental Organizations
Authors: Johnstone Ian 
Published: December 2024

Abstract
In “The Love for International Organizations”, Jean d’Aspremont identifies nine features of formal inter-governmental organizations that make them appealing to lawyers. This article focuses on three of those features – power, expertise, background knowledge – asking whether and in what ways they apply to so-called informal inter-governmental organizations, such as the G7, G20 and brics. These three attributes were chosen because they shed light on the comparative advantages and disadvantages of informal international organizations vis-à-vis formal ones. The article does not seek to generalise about which type of organization is better, but rather argues that where an organization falls on the spectrum of formality tells us something about how power is exercised, the impact of expertise on global public policy decision-making, and the importance of ‘like-mindedness’ among members of an international organization.