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Comparisons of Three Measures of Maternal Engagement Activities in the Neonatal Intensive Care Unit

imageBackground Mothers’ engagement with their hospitalized preterm infant(s) is recognized as an important aspect of treatment in neonatal intensive care units (NICUs). However, no gold standard exists for measuring maternal engagement, and the various methods used to measure mothers’ time have documented limitations. Objectives This study sought to compare three measurement methods of maternal engagement (a five-item maternal cross-sectional survey, time use diaries, and electronic health records [EHRs]) to identify whether these methods capture consistent data and patterns in detected differences in measures of engagement. Methods Maternal engagement was defined as time spent visiting the infant in the NICU (presence), holding (blanket holding in the mother’s arms or by kangaroo care [KC]), and caregiving (e.g., bathing and changing diapers). The survey estimating daily maternal engagement was administered in two Level III NICUs and one Level IV NICU at study enrollment, at least 2 weeks after admission. Mothers then completed the daily time use diaries until infant discharge. Data were also collected from participants’ EHRs, charted by nursing staff. Wilcoxon signed-rank tests were used for pairwise analysis of the three measures for maternal engagement activities. Results A total of 146 participants had data across all three measurement types and were included in the analysis. In the Level III NICUs (n = 101), EHR data showed significantly more time spent with all engagement activities than the diary data. In the Level IV data, only differences in time holding were significant when comparing EHR data with survey data, with mothers reporting more time doing KC and less time blanket holding. Comparison of EHR data with diary data showed more time in all activities except KC. Discussion In most cases, time spent in engagement activities measured in the EHR was higher than in the surveys or time use diaries. Accuracy of measurements could not be determined because of limitations in data collection, and there is no gold standard for comparison. Nevertheless, findings contribute to ongoing efforts to develop the most valuable and accurate strategies for measuring maternal engagement—a significant predictor of maternal and infant health.

Comprehensive compartmental model and calibration algorithm for the study of clinical implications of the population-level spread of COVID-19: a study protocol

Por: Robinson · B. · Edwards · J. D. · Kendzerska · T. · Pettit · C. L. · Poirel · D. · Daly · J. M. · Ammi · M. · Khalil · M. · Taillon · P. J. · Sandhu · R. · Mills · S. · Mulpuru · S. · Walker · T. · Percival · V. · Dolean · V. · Sarkar · A.

The complex dynamics of the coronavirus disease 2019 (COVID-19) pandemic has made obtaining reliable long-term forecasts of the disease progression difficult. Simple mechanistic models with deterministic parameters are useful for short-term predictions but have ultimately been unsuccessful in extrapolating the trajectory of the pandemic because of unmodelled dynamics and the unrealistic level of certainty that is assumed in the predictions.

Methods and analysis

We propose a 22-compartment epidemiological model that includes compartments not previously considered concurrently, to account for the effects of vaccination, asymptomatic individuals, inadequate access to hospital care, post-acute COVID-19 and recovery with long-term health complications. Additionally, new connections between compartments introduce new dynamics to the system and provide a framework to study the sensitivity of model outputs to several concurrent effects, including temporary immunity, vaccination rate and vaccine effectiveness. Subject to data availability for a given region, we discuss a means by which population demographics (age, comorbidity, socioeconomic status, sex and geographical location) and clinically relevant information (different variants, different vaccines) can be incorporated within the 22-compartment framework. Considering a probabilistic interpretation of the parameters allows the model’s predictions to reflect the current state of uncertainty about the model parameters and model states. We propose the use of a sparse Bayesian learning algorithm for parameter calibration and model selection. This methodology considers a combination of prescribed parameter prior distributions for parameters that are known to be essential to the modelled dynamics and automatic relevance determination priors for parameters whose relevance is questionable. This is useful as it helps prevent overfitting the available epidemiological data when calibrating the parameters of the proposed model. Population-level administrative health data will serve as partial observations of the model states.

Ethics and dissemination

Approved by Carleton University’s Research Ethics Board-B (clearance ID: 114596). Results will be made available through future publication.

What is the definition of acute episodic and chronic pain in critically ill neonates and infants? A global, four-stage consensus and validation study

Por: Ilhan · E. · Pacey · V. · Brown · L. · Spence · K. · van Ganzewinkel · C.-j. · Pillai Riddell · R. · Campbell-Yeo · M. · Stevens · B. J. · Eriksson · M. · Shah · V. · Anand · K. J. S. · Bellieni · C. · Daly · M. · Johnston · C. · Hush · J.

To define and validate types of pain in critically ill neonates and infants by researchers and clinicians working in the neonatal intensive care unit (NICU) and high dependency unit (HDU).


A qualitative descriptive mixed-methods design.


Each stage of the study was built on and confirmed the previous stages. Stage 1 was an expert panel to develop definitions; stage 2 was a different expert panel made up of neonatal clinicians to propose clinical characteristics associated with the definitions from stage 1; stage 3 was a focus group of neonatal clinicians to provide clinical case scenarios associated with each definition and clinical characteristics; and stage 4 was a survey administered to neonatal clinicians internationally to test the validity of the definitions using the clinical case scenarios.


In stage 1, the panel (n=10) developed consensus definitions for acute episodic pain and chronic pain in neonates and infants. In stage 2, a panel (n=8) established clinical characteristics that may be associated with each definition. In stage 3, a focus group (n=11) created clinical case scenarios of neonates and infants with acute episodic pain, chronic pain and no pain using the definitions and clinical characteristics. In stage 4, the survey (n=182) revealed that the definitions allowed an excellent level of discrimination between case scenarios that described neonates and infants with acute episodic pain and chronic pain (area under the receiver operating characteristic=0.87 and 0.89, respectively).


This four-stage study enabled the development of consensus-based and clinically valid definitions of acute episodic pain and chronic pain. There is a need to define and validate other pain types to inform a taxonomy of pain experienced by neonates and infants in the NICU and HDU.

Use of and barriers to maternal health services in southeast Chad: results of a population-based survey 2019

Por: Marquis · A. · OKeeffe · J. · Jafari · Y. · Mulanda · W. · Carrion Martin · A. I. · Daly · M. · van der Kam · S. · Ariti · C. · Bow Gamaou · A. · Baharadine · C. · Pena · S. J. · Ringtho · L. · Kuehne · A.

Chad reports the second highest maternal mortality worldwide. We conducted a survey in Sila region in southeast Chad to estimate the use of maternal health services (MHS) and to identify barriers to access MHS.


Retrospective cross-sectional, population-based survey using two-stage cluster sampling methodology. The survey consisted of two strata, Koukou Angarana and Goz Beida district in Sila region. We conducted systematic random sampling proportional to population size to select settlements in each strata in the first sampling stage; and in the second stage we selected households in the settlements using random walk procedure. We calculated survey-design-weighted proportions with 95% CIs. We performed univariate analysis and multivariable logistic regression to identify impact factors associated with the use of MHS.


We interviewed women in selected households in Sila region in 2019.


Women at reproductive age, who have given birth in the previous 2 years and are living in Koukou Angarana and Goz Beida district.

Primary outcomes

Use of and access barriers to MHS including antenatal care (ANC), delivery care in a health facility (DC), postnatal care (PNC) and contraceptive methods.


In total, 624 women participated. Median age was 28 years, 95.4% were illiterate and 95.7% married. Use of ANC, DC and PNC was reported by 57.6% (95% CI: 49.3% to 65.5%), 22.5% (95% CI: 15.7% to 31.1%) and 32.9% (95% CI: 25.8% to 40.9%), respectively. Use of MHS was lower in rural compared with urban settings. Having attended ANC increased the odds of using DC by 4.3 (1.5–12.2) and using PNC by 6.4 (3.7–11.1). Factors related to transport and to culture and belief were the most frequently stated access barriers to MHS.


In Sila region, use of MHS is low and does not meet WHO-defined standards regarding maternal health. Among all services, use of ANC was better than for other MHS. ANC usage is positively associated with the use of further life-saving MHS including DC and could be used as an entry point to the community. To increase use of MHS, interventions should include infrastructural improvements as well as community-based approaches to overcome access barriers related to culture and belief.

Self-Care Capacity and Its Relationship to Age, Disability, and Perceived Well-Being in Medicare Beneficiaries

imageBackground Self-care is a multicomponent set of capacities that influence beliefs about health and well-being. Objectives We examined the relationship between self-care capacity, age, and disability status with two perceptions of well-being in a cohort of Medicare beneficiaries. Methods The current study is part of a multisite research project to determine factors associated with cross-sectional and longitudinal morbidity and mortality trajectories observed in Medicare beneficiaries. Variable selection was informed by the health disparities and outcomes model. Using data from the 2013 Medicare Current Beneficiary Survey and logistic regression models, we determined associations between self-care capacity, including indicators of self-care ability and self-care agency and two perceptions of well-being. Participants were divided into four groups based on how they qualified for Medicare: (a) over 65 years of age, and below 65 years of age and disabled because of (b) physical or (c) mental disorder, or (d) disabled and could not be classified as physically or mentally disabled as the primary cause of eligibility. Results Self-care ability limitations in activities of daily living (ADL), instrumental activities of living (IADL), and social activity participation were associated with both health perceptions. Those with physical disabilities reported more ADL and IADL limitations when compared with the other eligibility groups and were significantly more likely to have negative health perceptions. Those with serious mental illness were most likely to report the most severe IADL limitations. The over 65 years of age group reported less self-care incapacity than the other three eligibility types. Other components of self-care, including health literacy, agency, and health behaviors, significantly influenced perceptions of health. Women and people identifying as non-Whites were more likely to have negative health perceptions. Discussion Self-care capacity is a complex construct, and its varied elements have differential relationships with perceptions of well-being. Those with physical disabilities reported more self-care limitations, poorer perceived health, and more health worries than the other groups. Still, there were different patterns of self-care capacities in the serious mental illness type—especially in IADL limitations. The study adds empirical evidence to previous research documenting inequities in health outcomes for women and non-Whites. Findings provide empirical support for the health disparities and outcomes model.

Possible Bioenergetic Biomarker for Chronic Cancer-Related Fatigue

imageBackground Cancer-related fatigue (CRF) is a highly prevalent, debilitating, and persistent symptom experienced by patients receiving cancer treatments. Up to 71% of men with prostate cancer receiving radiation therapy experience acute and persistent CRF. There is neither an effective therapy nor a diagnostic biomarker for CRF. This pilot study aimed to discover potential biomarkers associated with chronic CRF in men with prostate cancer receiving radiation therapy. Methods We used a longitudinal repeated-measures research design. Twenty men with prostate cancer undergoing radiation therapy completed all study visits. CRF was evaluated by a well-established and validated questionnaire, the Patient-Reported Outcomes Measurement Information System for Fatigue (PROMIS-F) Short Form. In addition, peripheral blood mononuclear cells were harvested to quantify ribonucleic acid (RNA) gene expression of mitochondria-related genes. Data were collected before, during, on completion, and 24 months postradiation therapy and analyzed using paired t-tests and repeated-measures analysis of variance. Results The mean of the PROMIS-F T score was significantly increased over time in patients with prostate cancer, remaining elevated at 24 months postradiation therapy compared to baseline. A significant downregulated BC1 ubiquinol-cytochrome c reductase synthesis-like (BCS1L) was observed over time during radiation therapy and at 24 months postradiation therapy. An increased PROMIS-F score was trended with downregulated BCS1L in patients 24 months after completing radiation therapy. Discussion This is the first evidence to describe altered messenger RNA for BCS1L in chronic CRF using the PROMIS-F measure with men receiving radiation therapy for prostate cancer. Conclusion Our results suggest that peripheral blood mononuclear cell messenger RNA for BCS1L is a potential biomarker and therapeutic target for radiation therapy-induced chronic CRF in this clinical population.

Web-based internet searches for digital health products in the United Kingdom before and during the COVID-19 pandemic: a time-series analysis using app libraries from the Organisation for the Review of Care and Health Applications (ORCHA)

Por: Leigh · S. · Daly · R. · Stevens · S. · Lapajne · L. · Clayton · C. · Andrews · T. · Ashall-Payne · L.

To explore if consumer interest in digital health products (DHPs), changed following the COVID-19 pandemic and the lockdown measures that ensued.


Retrospective time-series analysis of web-based internet searches for DHPs in the UK, split over two periods, pre-COVID-19 lockdown (January 2019–23 March 2020) and post-COVID-19 lockdown (24 March 2020–31 December 2020).


The UK.


Members of the UK general population using health-app libraries provided by the Organisation for the Review of Care and Health Applications.

Primary and secondary outcome measures

The primary outcome was volume of searches for DHPs. Secondary outcomes considered search volumes for 25 different therapeutic areas. Outcomes were assessed for significance using a two-stage Poisson test.


There were 126 640 searches for DHPs over the study period. Searches for DHPs increased by 343% from 2446 per month prior to COVID-19 lockdown measures being introduced to 8996 per month in the period following the first COVID-19 lockdown in the UK. In total, 23/25 (92%) of condition areas experienced a significant increase in searches for DHPs, with the greatest increases occurring in the first 2 months following lockdown. Musculoskeletal conditions (2,036%), allergy (1,253%) and healthy living DHPs (1,051%) experienced the greatest increases in searches compared with pre-lockdown. Increased search volumes for DHPs were sustained in the 9 months following the introduction of lockdown measures, with 21/25 (84%) of condition areas experiencing monthly search volumes at least 50% greater than pre-lockdown levels.


The COVID-19 pandemic has profoundly disrupted the routine delivery of healthcare, making face-to-face interaction difficult, and contributing to unmet clinical needs. This study has demonstrated significant increases in internet searches for DHPs by members of the UK population since COVID-19, signifying an increased interest in this potential therapeutic medium. Future research should clarify whether this increased interest has resulted in increased acceptance and utilisation of these technologies also.

Study protocol for a randomised controlled trial of enhanced informed consent compared to standard informed consent to improve patient understanding of early phase oncology clinical trials (CONSENT)

Por: Pal · A. · Stapleton · S. · Yap · C. · Lai-Kwon · J. · Daly · R. · Magkos · D. · Baikady · B. R. · Minchom · A. · Banerji · U. · De Bono · J. · Karikios · D. · Boyle · F. · Lopez · J.

Early phase cancer clinical trials have become increasingly complicated in terms of patient selection and trial procedures—this is reflected in the increasing length of participant information sheets (PIS). Informed consent for early phase clinical trials has been contentious due to the potential ethical issues associated with performing experimental research on a terminally ill population which has exhausted standard treatment options. Empirical studies have demonstrated significant gaps in patient understanding regarding the nature and intent of these trials. This study aims to test whether enhanced informed consent for patient education can improve patient scores on a validated questionnaire testing clinical trial comprehension.

Methods and analysis

This is a randomised controlled trial that will allocate patients who are eligible to participate in one of four investigator-initiated clinical trials at the Royal Marsden Drug Development Unit to either a standard arm or an experimental arm, stratified by age and educational level. The standard arm will involve the full length trial PIS, followed by electronic or paper administration of the Quality of Informed Consent Questionnaire Parts A and B (QuIC-A and QuIC-B). The experimental arm will involve the full length trial PIS, exposure to a two-page study aid and 10 online educational videos, followed by administration of the QuIC-A and QuIC-B. The primary endpoint will be the difference (using a one-sided two-sample t-test) in the QuIC-A score, which measures objective understanding, between the standard and experimental arm. Accrual target is at least 17 patients per arm to detect an 8 point difference (80% power, alpha 0.05).

Ethics and dissemination

Ethics approval was granted by the National Health Service Health Research Authority on 15 June 2020—IRAS Project ID 277065, Protocol Number CCR5165, REC Reference 20/EE/0155. Results will be disseminated via publication in a relevant journal.

Trial registration number

NCT04407676; Pre-results.

Community nurses’ attitudes, knowledge and educational needs in relation to urinary continence, continence assessment and management: A systematic review


Aims and objectives

To identify, appraise and summarise the available evidence relating to community nurses’ attitudes, knowledge and educational needs in relation to urinary continence.


Community nurses play a pivotal role in identifying and supporting individuals who experience urinary continence issues. Gaps in nurses’ continence-related education and knowledge may contribute to sub-optimal assessment and management across the continuum of care.


A systematic review.


MEDLINE, CINAHL Complete and EMBASE were searched from inception to November 2020; keywords used included community nurses, urinary continence, incontinence, knowledge, attitude and education needs. Given the degree of heterogeneity between included studies, a meta-analysis was not feasible. Included studies were critically evaluated; key study characteristics and findings pertinent to the review purpose were summarised. The review adhered to the PRISMA 2020 checklist.


Four studies reported in six papers were included. Community nurses lacked knowledge in certain areas of urinary continence and incontinence. Nurses reported they were adequately prepared but without sufficient knowledge to effectively care for those with urinary incontinence. Community nurses’ attitudes to urinary incontinence were generally positive, but they demonstrated misconceptions that urinary incontinence was inevitable and less distressing for older people.


There is limited research exploring community nurses’ knowledge, attitudes and education needs in relation to urinary continence and incontinence care. Community nurses may have knowledge gaps and less favourable attitudes to some aspects of urinary continence care.

Moral outrage in COVID19—Understandable but not a strategy

Journal of Clinical Nursing, Volume 29, Issue 19-20, Page 3600-3602, October 2020.

Who speaks for nursing? COVID‐19 highlighting gaps in leadership

Journal of Clinical Nursing, Volume 29, Issue 15-16, Page 2751-2752, August 2020.