Measuring quality and outcomes of research collaborations: An integrative review

Introduction: Although the science of team science is no longer a new field, the measurement of team science and its standardization remain in relatively early stages of development. To describe the current state of team science assessment, we conducted an integrative review of measures of research collaboration quality and outcomes. Methods: Collaboration measures were identified using both a literature review based on specific keywords and an environmental scan. Raters abstracted details about the measures using a standard tool. Measures related to collaborations with clinical care, education, and program delivery were excluded from this review. Results: We identified 44 measures of research collaboration quality, which included 35 measures with reliability and some form of statistical validity reported. Most scales focused on group dynamics. We identified 89 measures of research collaboration outcomes; 16 had reliability and 15 had a validity statistic. Outcome measures often only included simple counts of products; publications rarely defined how counts were delimited, obtained, or assessed for reliability. Most measures were tested in only one venue. Conclusions: Although models of collaboration have been developed, in general, strong, reliable, and valid measurements of such collaborations have not been conducted or accepted into practice. This limitation makes it difficult to compare the characteristics and impacts of research teams across studies or to identify the most important areas for intervention. To advance the science of team science, we provide recommendations regarding the development and psychometric testing of measures of collaboration quality and outcomes that can be replicated and broadly applied across studies

Development and validation of a targeted gene sequencing panel for application to disparate cancers

Next generation sequencing has revolutionised genomic studies of cancer, having facilitated the development of precision oncology treatments based on a tumour’s molecular profile. We aimed to develop a targeted gene sequencing panel for application to disparate cancer types with particular focus on tumours of the head and neck, plus test for utility in liquid biopsy. The final panel designed through Roche/Nimblegen combined 451 cancer-associated genes (2.01 Mb target region). 136 patient DNA samples were collected for performance and application testing. Panel sensitivity and precision were measured using well-characterised DNA controls (n = 47), and specificity by Sanger sequencing of the Aryl Hydrocarbon Receptor Interacting Protein (AIP) gene in 89 patients. Assessment of liquid biopsy application employed a pool of synthetic circulating tumour DNA (ctDNA). Library preparation and sequencing were conducted on Illumina-based platforms prior to analysis with our accredited (ISO15189) bioinformatics pipeline. We achieved a mean coverage of 395x, with sensitivity and specificity of >99% and precision of >97%. Liquid biopsy revealed detection to 1.25% variant allele frequency. Application to head and neck tumours/cancers resulted in detection of mutations aligned to published databases. In conclusion, we have developed an analytically-validated panel for application to cancers of disparate types with utility in liquid biopsy

The FANCM:p.Arg658* truncating variant is associated with risk of triple-negative breast cancer

Abstract: Breast cancer is a common disease partially caused by genetic risk factors. Germline pathogenic variants in DNA repair genes BRCA1, BRCA2, PALB2, ATM, and CHEK2 are associated with breast cancer risk. FANCM, which encodes for a DNA translocase, has been proposed as a breast cancer predisposition gene, with greater effects for the ER-negative and triple-negative breast cancer (TNBC) subtypes. We tested the three recurrent protein-truncating variants FANCM:p.Arg658*, p.Gln1701*, and p.Arg1931* for association with breast cancer risk in 67,112 cases, 53,766 controls, and 26,662 carriers of pathogenic variants of BRCA1 or BRCA2. These three variants were also studied functionally by measuring survival and chromosome fragility in FANCM−/− patient-derived immortalized fibroblasts treated with diepoxybutane or olaparib. We observed that FANCM:p.Arg658* was associated with increased risk of ER-negative disease and TNBC (OR = 2.44, P = 0.034 and OR = 3.79; P = 0.009, respectively). In a country-restricted analysis, we confirmed the associations detected for FANCM:p.Arg658* and found that also FANCM:p.Arg1931* was associated with ER-negative breast cancer risk (OR = 1.96; P = 0.006). The functional results indicated that all three variants were deleterious affecting cell survival and chromosome stability with FANCM:p.Arg658* causing more severe phenotypes. In conclusion, we confirmed that the two rare FANCM deleterious variants p.Arg658* and p.Arg1931* are risk factors for ER-negative and TNBC subtypes. Overall our data suggest that the effect of truncating variants on breast cancer risk may depend on their position in the gene. Cell sensitivity to olaparib exposure, identifies a possible therapeutic option to treat FANCM-associated tumors

The ARID1B spectrum in 143 patients: from nonsyndromic intellectual disability to Coffin–Siris syndrome

Purpose: Pathogenic variants in ARID1B are one of the most frequent causes of intellectual disability (ID) as determined by large-scale exome sequencing studies. Most studies published thus far describe clinically diagnosed Coffin–Siris patients (ARID1B-CSS) and it is unclear whether these data are representative for patients identified through sequencing of unbiased ID cohorts (ARID1B-ID). We therefore sought to determine genotypic and phenotypic differences between ARID1B-ID and ARID1B-CSS. In parallel, we investigated the effect of different methods of phenotype reporting. Methods: Clinicians entered clinical data in an extensive web-based survey. Results: 79 ARID1B-CSS and 64 ARID1B-ID patients were included. CSS-associated dysmorphic features, such as thick eyebrows, long eyelashes, thick alae nasi, long and/or broad philtrum, small nails and small or absent fifth distal phalanx and hypertrichosis, were observed significantly more often (p < 0.001) in ARID1B-CSS patients. No other significant differences were identified. Conclusion: There are only minor differences between ARID1B-ID and ARID1B-CSS patients. ARID1B-related disorders seem to consist of a spectrum, and patients should be managed similarly. We demonstrated that data collection methods without an explicit option to report the absence of a feature (such as most Human Phenotype Ontology-based methods) tended to underestimate gene-related features

Recognition of Pain in the Neonate to Increase Effective Neonate to Nurse Communication

Until the late 1980s, the healthcare standard assumption was that neonates did not experience pain. Currently, the neonatal mortality rate exceeds six/1,000 live births each year in the United States, in part, due to our inability to rapidly and accurately detect unexpected changes in their condition. Moreover, pain detection of the neonate is complicated with less than 50% of neonates’ able to communicate pain through crying. Miscommunication accounts for the loss of nearly 100,000 lives each year. The current electronic health record (EHR) is a contributor to this statistic as an ineffective communication tool. Of particular concern, is the communication of clinical events (CEs) or subtle changes in patient condition that risk unexpected patient death. CEs are defined as events that reflect a change in patient status and present as pain, fever, bleeding, changes in respiratory status, changes in output, and changes in level of consciousness. Effective neonate and nurse communication of pain is of particular interest in this research as a contributor of neonatal mortality. Additionally, ineffective neonate-nurse communication is a contributor to neonatal mortality. The purpose is to learn nurses’ perceptions of pain in the neonate and current methods of neonate-nurse communication of pain. Underpinned by Carrington’s work, in particular, Carrington’s Effective Nurse to Nurse Communication Framework, Synactive Theory of Behavioral Organization and Development, and Learning Theories, specifically, Predictive Brains as Hierarchical Learning Machines and Statistical Learning. The sample consisted of 30 participants who worked at a local hospital located in southwest Arizona, in a 42-bed level III neonatal intensive care unit (NICU). The participants, who met inclusion criteria, participated in audio-recorded interviews. The interviews were transcribed verbatim and analyzed using content analysis and the Goodwin statistic (Goodwin & Goodwin, 1985). The emerging categories are Perceptions of Pain in the Neonate, Nurse Communication, Neonate Communication, and Technology. Additionally, the strengths, limitations, and recommendations for future research are also presented. New discoveries were made from this research, revealing insights to neonate to nurse communication: 1) Nurses perceive pain in the neonate individually, and 2) The importance of monitors as a communication tool to pain in the neonate

‘Powering through’: A qualitative descriptive study of nurses working while in pain

Aims and Objectives: To describe the experience of nurses working while in pain and the potential impact on work performance. Pain is described more broadly and inclusive of musculoskeletal injuries, psychological and emotional pain. Background: Nurse have been recognised as developing pain and injuries; however, the experience of nurses working while in pain and its impact is not well-described. Design: A qualitative descriptive analysis of interviews from an explanatory mixed methods study. Methods: Twenty direct care nurses who experienced pain in the past week participated in the semi-structured interviews. Transcripts were analysed using content analysis. Guidelines for reporting following the COREQ checklist. Results: Categories identified: (1) pain provocation, quality of pain, refers, severity, and time (PQRST); (2) Avoiding pain at work; (3) Hiding pain's impact; (4) Tools at Work; (5) Pain recovery at home; (6) Career consequences; and (7) ‘Supernurse’ culture; (8) Stigma and its impact on pain management; and (9) Dream work environment. Conclusions: Pain was described as part of nursing and impacted nurses' career plans and performance. Nurses described minimising the direct impact on their patient care but admitted that there was an impact on teamwork and thinking which have been linked to negative patient outcomes. Relevance to clinical practice: Clinical practice was an aggravating factor for all nurses in the study and impacted their performance and career trajectory. Workplace tools to decrease nurse injury and pain exist; however, tools were not used often due to lack of resources and training. The culture of nursing that accepts pain as part of the job needs to be addressed.12 month embargo; first published: 21 September 2022This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

Recruiting Nurses Via Social Media for Survey Studies

Background: Nurses are a difficult population to recruit for research. Barriers to recruitment of nurses include survey fatigue, hospital structures and institutional review boards as gatekeepers to accessing participants, and limited generalizability of findings. Social media present innovative opportunities to recruit participants for survey research. However, there is limited information about best practices for recruiting nurses through social media. Objectives: The aim of this report was to examine the advantages and disadvantages of and determine the best practices for recruiting nurses for survey studies via social media. Methods: We examined recruitment strategies of three survey studies involving nurse participants. Each study used social exchange theory and leverage-saliency theory to guide recruitment. The studies included were (a) the Travel Nurse Onboarding Study, which recruited participants from a single closed group on Facebook; (b) the Presenteeism and Nursing Study where participants were recruited using association listservs, healthcare organizations, and paid ads and postings on social media; and (c) the Pain and Nursing Study in which participants were recruited through social media, association listservs, and in person at conferences. Results: Social media offer accessible, low-cost, high-yield approaches to recruitment of nurses for survey studies. Discussion Useful strategies for crafting effective recruitment via social media are presented, including how, where, when, and how often to post. The generalizability of social media research is also discussed. Suggestions are provided for researchers using social media as well as guidelines for institutional review boards to address gray areas of social media research. Data integrity protection techniques are proposed to ensure social media survey data are not corrupted by malicious bots. This report outlines best practices for the recruitment of nurses for survey studies using social media. © 2020 Wolters Kluwer Health, Inc. All rights reserved.12 month embargo; published 01 June 2021This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

A Qualitative Study Describing Nurses' Experiences With Presenteeism

OBJECTIVE: The aim of this study was to understand nurse awareness of coping and decision making regarding presenteeism and the consequences thereof. BACKGROUND: Nurses report high levels of presenteeism or not being able to fully function in the workplace, but we currently lack understanding of nurse perceptions of presenteeism and its consequences. METHODS: A qualitative descriptive method was used to evaluate the perceptions of nurses from medical surgical units at 2 different hospitals. FINDINGS: For purposes of the study, presenteeism was defined as being present at work when not fully engaged. Most respondents experienced presenteeism in the month before data collection. Five categories of themes were identified: 1) factors leading to presenteeism, 2) awareness and symptoms of presenteeism, 3) coping with presenteeism on and off shift, 4) decision making regarding presenteeism, and 5) consequences of presenteeism. CONCLUSIONS: Both personal and work factors contribute to presenteeism. To decrease presenteeism, healthcare leaders and systems should consider reviewing and changing sick/leave polices, unit cultures, and a lack of resources that contribute to and encourage an awareness of presenteeism, thereby decreasing nurse fatigue. Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.12 month embargo; first published online 31 March 2021This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

NEC-zero recommendations from scoping review of evidence to prevent and foster timely recognition of necrotizing enterocolitis

Abstract Background Although decades have focused on unraveling its etiology, necrotizing enterocolitis (NEC) remains a chief threat to the health of premature infants. Both modifiable and non-modifiable risk factors contribute to varying rates of disease across neonatal intensive care units (NICUs). Purpose The purpose of this paper is to present a scoping review with two new meta-analyses, clinical recommendations, and implementation strategies to prevent and foster timely recognition of NEC. Methods Using the Translating Research into Practice (TRIP) framework, we conducted a stakeholder-engaged scoping review to classify strength of evidence and form implementation recommendations using GRADE criteria across subgroup areas: 1) promoting human milk, 2) feeding protocols and transfusion, 3) timely recognition strategies, and 4) medication stewardship. Sub-groups answered 5 key questions, reviewed 11 position statements and 71 research reports. Meta-analyses with random effects were conducted on effects of standardized feeding protocols and donor human milk derived fortifiers on NEC. Results Quality of evidence ranged from very low (timely recognition) to moderate (feeding protocols, prioritize human milk, limiting antibiotics and antacids). Prioritizing human milk, feeding protocols and avoiding antacids were strongly recommended. Weak recommendations (i.e. “probably do it”) for limiting antibiotics and use of a standard timely recognition approach are presented. Meta-analysis of data from infants weighing <1250 g fed donor human milk based fortifier had reduced odds of NEC compared to those fed cow’s milk based fortifier (OR = 0.36, 95% CI 0.13, 1.00; p = 0.05; 4 studies, N = 1164). Use of standardized feeding protocols for infants <1500 g reduced odds of NEC by 67% (OR = 0.33, 95% CI 0.17, 0.65, p = 0.001; 9 studies; N = 4755 infants). Parents recommended that NEC information be shared early in the NICU stay, when feedings were adjusted, or feeding intolerance occurred via print and video materials to supplement verbal instruction. Discussion Evidence for NEC prevention is of sufficient quality to implement. Implementation that addresses system-level interventions that engage the whole team, including parents, will yield the best impact to prevent NEC and foster its timely recognition