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Programmes to prepare siblings for future roles to support their brother or sister with a neurodisability: protocol of a scoping review

Por: Nguyen · L. · Bootsma · J. · Di Rezze · B. · Jack · S. · Ketelaar · M. · Gorter · J. W.
Introduction

Siblings share a lifelong bond in their relationship, and they may choose to provide support to their brother or sister with a neurodisability. Previous reviews summarised programmes that only focused on the behavioural, emotional and psychological outcomes of the siblings. There is a need to synthesise existing evidence and enhance our understanding about programmes for siblings to acquire knowledge, develop skills and become empowered that can help them to provide support to their brother or sister with a neurodisability. The objective of this review is to identify and map the characteristics and outcomes of programmes designed to prepare siblings in their future roles to support their brother or sister with a neurodisability.

Methods and analysis

This review will be conducted using the Joanna Briggs Institute methodology for scoping reviews. An integrated knowledge translation approach will be used by partnering with the Sibling Youth Advisory Council comprised of siblings of individuals with a disability throughout all review phases. Databases to be searched include PsycINFO, Cumulative Index of Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, EMBASE, Web of Science, MEDLINE (Ovid) and SPORTDiscus, from date of inception to November 2020. Studies of programmes designed for siblings of individuals with neurodisabilities, with no exclusion on the age of siblings or context, and published in English will be included. Extracted data will include details of programme structure and content, eligibility criteria and participants, context, study methods and outcomes. A summary of the results will be presented in a tabular form to provide an overview of the programmes with an accompanying narrative summary to address the research questions of this review.

Dissemination

Findings from this review will be shared using dissemination strategies in partnership with the Sibling Youth Advisory Council. We will share the findings with key stakeholders such as healthcare providers, researchers, and patient and family advocacy groups.

Transport characteristics and predictors of mortality among neonates referred to a tertiary care centre in North India: a prospective observational study

Por: Singh · J. · Dalal · P. · Gathwala · G. · Rohilla · R.
Objective

The paucity of specialised care in the peripheral areas of developing countries necessitates the referral of sick neonates to higher centres. Organised interhospital transport services provided by a skilled and well-equipped team can significantly improve the outcome. The present study evaluated the transport characteristics and predictors of mortality among neonates referred to a tertiary care centre in North India.

Design

Prospective observational study.

Settings

Tertiary care teaching hospital in North India.

Patients

1013 neonates referred from peripheral health units.

Main outcome measures

Mortality among referred neonates on admission to our centre.

Results

Of the 1013 enrolled neonates, 83% were transferred through national ambulance services, 13.7% through private hospital ambulances and 3.3% through personal vehicles. Major transfer indications were prematurity (35%), requirement for ventilation (32%), birth asphyxia (28%) and hyperbilirubinaemia (19%). Hypothermia (32.5%, 330 of 1013), shock (19%, 192 of 1013) and requirement for immediate cardiorespiratory support (ICRS) (10.4%, 106 of 1013) on arrival were the major complications observed during transfer. A total of 305 (30.1%, N=1013) deaths occurred. Of these, 52% (n=160) died within 24 hours of arrival. On multivariate logistic analysis, unsupervised pregnancy (2 hours (p=0.005) and absence of trained staff during transfer (p

Conclusion

The present study depicts high mortality among infants referred to our centre. Adequate training of peripheral health personnel and availability of pre-referral stabilisation and dedicated interhospital transport teams for sick neonate transfers may prove valuable interventions for improved outcomes.

COpenhagen Neuroplastic TRaining Against Contractures in Toddlers (CONTRACT): protocol of an open-label randomised clinical trial with blinded assessment for prevention of contractures in infants with high risk of cerebral palsy

Por: Willerslev-Olsen · M. · Lorentzen · J. · Rohder · K. · Ritterband-Rosenbaum · A. · Justiniano · M. · Guzzetta · A. · Lando · A. V. · Jensen · A.-M. B. · Greisen · G. · Ejlersen · S. · Pedersen · L. Z. · Andersen · B. · Lipthay Behrend · P. · Nielsen · J. B.
Introduction

Contractures are frequent causes of reduced mobility in children with cerebral palsy (CP) already at the age of 2–3 years. Reduced muscle use and muscle growth have been suggested as key factors in the development of contractures, suggesting that effective early prevention may have to involve stimuli that can facilitate muscle growth before the age of 1 year. The present study protocol was developed to assess the effectiveness of an early multicomponent intervention, CONTRACT, involving family-oriented and supervised home-based training, diet and electrical muscle stimulation directed at facilitating muscle growth and thus reduce the risk of contractures in children at high risk of CP compared with standard care.

Methods and analysis

A two-group, parallel, open-label randomised clinical trial with blinded assessment (n=50) will be conducted. Infants diagnosed with CP or designated at high risk of CP based on abnormal neuroimaging or absent fidgety movement determined as part of General Movement Assessment, age 9–17 weeks corrected age (CA) will be recruited. A balanced 1:1 randomisation will be made by a computer. The intervention will last for 6 months aiming to support parents in providing daily individualised, goal-directed activities and primarily in lower legs that may stimulate their child to move more and increase muscle growth. Guidance and education of the parents regarding the nutritional benefits of docosahexaenic acid (DHA) and vitamin D for the developing brain and muscle growth will be provided. Infants will receive DHA drops as nutritional supplements and neuromuscular stimulation to facilitate muscle growth. The control group will receive standard care as offered by their local hospital or community. Outcome measures will be taken at 9, 12, 18, 24, 36 and 48 months CA. Primary and secondary outcome measure will be lower leg muscle volume and stiffness of the triceps surae musculotendinous unit together with infant motor profile, respectively.

Ethics and dissemination

Full approval from the local ethics committee, Danish Committee System on Health Research Ethics, Region H (H-19041562). Experimental procedures conform with the Declaration of Helsinki.

Trial registration number

NCT04250454.

Expected recruitment period

1 January 2021–1 January 2025.

Influence of serum iron test results on the diagnosis of iron deficiency in children: a retrospective observational study

Por: Sezgin · G. · Li · L. · Westbrook · J. · Wearne · E. · Azar · D. · McLeod · A. · Pearce · C. · Ignjatovic · V. · Monagle · P. · Georgiou · A.
Background and objective

Serum iron results are not indicative of iron deficiency yet may be incorrectly used to diagnose iron deficiency instead of serum ferritin results. Our objective was to determine the association between serum iron test results and iron-deficiency diagnosis in children by general practitioners.

Design, setting, patients and main outcome measures

A retrospective observational study of 14 187 children aged 1–18 years with serum ferritin and serum iron test results from 137 general practices in Victoria, Australia, between 2008 and 2018. Generalised estimating equation models calculating ORs were used to determine the association between serum iron test results (main exposure measure) and iron-deficiency diagnosis (outcome measure) in the following two population groups: (1) iron-deplete population, defined as having a serum ferritin 30 µg/L.

Results

3484 tests were iron deplete and 15 528 were iron replete. Iron-deplete children were less likely to be diagnosed with iron deficiency if they had normal serum iron levels (adjusted OR (AOR): 0.73; 95% CI 0.57 to 0.96). Iron-replete children had greater odds of an iron-deficiency diagnosis if they had low serum iron results (AOR: 2.59; 95% CI 1.72 to 3.89). Other contributors to an iron-deficiency diagnosis were female sex and having anaemia.

Conclusion

Serum ferritin alone remains the best means of diagnosing iron deficiency. Reliance on serum iron test results by general practitioners is leading to significant overdiagnosis and underdiagnosis of iron deficiency in children.

Management of asthma in childhood: study protocol of a systematic evidence update by the Paediatric Asthma in Real Life (PeARL) Think Tank

Por: Mathioudakis · A. G. · Miligkos · M. · Boccabella · C. · Alimani · G. S. · Custovic · A. · Deschildre · A. · Ducharme · F. M. · Kalayci · O. · Murray · C. · Garcia · A. N. · Phipatanakul · W. · Price · D. · Sheikh · A. · Agache · I. O. · Bacharier · L. · Beloukas · A. · Bentley · A. · Bo
Introduction

Clinical recommendations for childhood asthma are often based on data extrapolated from studies conducted in adults, despite significant differences in mechanisms and response to treatments. The Paediatric Asthma in Real Life (PeARL) Think Tank aspires to develop recommendations based on the best available evidence from studies in children. An overview of systematic reviews (SRs) on paediatric asthma maintenance management and an SR of treatments for acute asthma attacks in children, requiring an emergency presentation with/without hospital admission will be conducted.

Methods and analysis

Standard methodology recommended by Cochrane will be followed. Maintenance pharmacotherapy of childhood asthma will be evaluated in an overview of SRs published after 2005 and including clinical trials or real-life studies. For evaluating pharmacotherapy of acute asthma attacks leading to an emergency presentation with/without hospital admission, we opted to conduct de novo synthesis in the absence of adequate up-to-date published SRs. For the SR of acute asthma pharmacotherapy, we will consider eligible SRs, clinical trials or real-life studies without time restrictions. Our evidence updates will be based on broad searches of Pubmed/Medline and the Cochrane Library. We will use A MeaSurement Tool to Assess systematic Reviews, V.2, Cochrane risk of bias 2 and REal Life EVidence AssessmeNt Tool to evaluate the methodological quality of SRs, controlled clinical trials and real-life studies, respectively.

Next, we will further assess interventions for acute severe asthma attacks with positive clinical results in meta-analyses. We will include both controlled clinical trials and observational studies and will assess their quality using the previously mentioned tools. We will employ random effect models for conducting meta-analyses, and Grading of Recommendations Assessment, Development and Evaluation methodology to assess certainty in the body of evidence.

Ethics and dissemination

Ethics approval is not required for SRs. Our findings will be published in peer reviewed journals and will inform clinical recommendations being developed by the PeARL Think Tank.

PROSPERO registration numbers

CRD42020132990, CRD42020171624.

Improving the patient-centred care of children with life-altering skin conditions using feedback from electronic patient-reported outcome measures: protocol for a hybrid effectiveness-implementation study (PEDS-ePROM)

Por: Tyack · Z. · Simons · M. · McPhail · S. M. · Harvey · G. · Zappala · T. · Ware · R. S. · Kimble · R. M.
Introduction

Using patient-reported outcome measures (PROMs) with children have been described as ‘giving a voice to the child’. Few studies have examined the routine use of these measures as potentially therapeutic interventions. This study aims to investigate: (1) the effectiveness of feedback using graphical displays of information from electronic PROMs (ePROMs) that target health-related quality of life, to improve health outcomes, referrals and treatment satisfaction and (2) the implementation of ePROMs and graphical displays by assessing acceptability, sustainability, cost, fidelity and context of the intervention and study processes.

Methods and analysis

A hybrid II effectiveness-implementation study will be conducted from February 2020 with children with life-altering skin conditions attending two outpatient clinics at a specialist paediatric children’s hospital. A pragmatic randomised controlled trial and mixed methods process evaluation will be completed. Randomisation will occur at the child participant level. Children or parent proxies completing baseline ePROMs will be randomised to: (1) completion of ePROMs plus graphical displays of ePROM results to treating clinicians in consultations, versus (2) completion of ePROMs without graphical display of ePROM results. The primary outcome of the effectiveness trial will be overall health-related quality of life of children. Secondary outcomes will include other health-related quality of life outcomes (eg, child psychosocial and physical health, parent psychosocial health), referrals and treatment satisfaction. Trial data will be primarily analysed using linear mixed-effects models; and implementation data using inductive thematic analysis of interviews, meeting minutes, observational field notes and study communication mapped to the Consolidated Framework for Implementation Research.

Ethics and dissemination

Ethical approval was obtained from Children’s Health Queensland Human Research Ethics Committee (HREC/2019/QCHQ/56290), The University of Queensland (2019002233) and Queensland University of Technology (1900000847). Dissemination will occur through stakeholder groups, scientific meetings and peer-reviewed publications.

Trial registration number

Australian New Zealand Clinical Trials Registry (ACTRN12620000174987).

Early Moves: a protocol for a population-based prospective cohort study to establish general movements as an early biomarker of cognitive impairment in infants

Por: Elliott · C. · Alexander · C. · Salt · A. · Spittle · A. J. · Boyd · R. N. · Badawi · N. · Morgan · C. · Silva · D. · Geelhoed · E. · Ware · R. S. · Ali · A. · McKenzie · A. · Bloom · D. · Sharp · M. · Ward · R. · Bora · S. · Prescott · S. · Woolfenden · S. · Le · V. · Davidson · S.-A. · Thorn
Introduction

The current diagnostic pathways for cognitive impairment rarely identify babies at risk before 2 years of age. Very early detection and timely targeted intervention has potential to improve outcomes for these children and support them to reach their full life potential. Early Moves aims to identify early biomarkers, including general movements (GMs), for babies at risk of cognitive impairment, allowing early intervention within critical developmental windows to enable these children to have the best possible start to life.

Method and analysis

Early Moves is a double-masked prospective cohort study that will recruit 3000 term and preterm babies from a secondary care setting. Early Moves will determine the diagnostic value of abnormal GMs (at writhing and fidgety age) for mild, moderate and severe cognitive delay at 2 years measured by the Bayley-4. Parents will use the Baby Moves smartphone application to video their babies’ GMs. Trained GMs assessors will be masked to any risk factors and assessors of the primary outcome will be masked to the GMs result. Automated scoring of GMs will be developed through applying machine-based learning to the data and the predictive value for an abnormal GM will be investigated. Screening algorithms for identification of children at risk of cognitive impairment, using the GM assessment (GMA), and routinely collected social and environmental profile data will be developed to allow more accurate prediction of cognitive outcome at 2 years. A cost evaluation for GMA implementation in preparation for national implementation will be undertaken including exploring the relationship between cognitive status and healthcare utilisation, medical costs, health-related quality of life and caregiver burden.

Ethics and dissemination

Ethics approval has been granted by the Medical Research Ethics Committee of Joondalup Health Services and the Health Service Human Research Ethics Committee (1902) of Curtin University (HRE2019-0739).

Trial registration number

ACTRN12619001422112.

CoCo20 protocol: a pilot longitudinal follow-up study about the psychiatric outcomes in a paediatric population and their families during and after the stay-at-home related to coronavirus pandemic (COVID-19)

Por: Gindt · M. · Fernandez · A. · Richez · A. · Nachon · O. · Battista · M. · Askenazy · F.
Introduction

In the context of a viral outbreak and the stay-at-home measures, a significant increase in psychological distress, such as stress or fear behaviours, has previously been reported in adult and paediatric population. Children and adolescents seem to be particularly at risk of developing psychiatric disorders during and after the stay-at-home but evidences are lacking. The main objective of this article is to present the methodology of Coronavirus Confinement 2020 (CoCo20) Study, which aims to assess the impact of the coronavirus pandemic (COVID-19) and stay-at-home on the development of psychiatric disorders, including post-traumatic stress disorder (PTSD), in children and adolescents.

Methods and analysis

We describe a longitudinal and multicentre study in the paediatric population during and after stay-at-home related to COVID-19 pandemic. Inclusions started on 30 March 2020 for 6 months. This study is proposed to all consecutive paediatric outpatients consulting during and after stay-at-home related to COVID-19 pandemic in medical–psychological centres and in a paediatric psychotrauma centre and/or calling the emergency COVID-19 hotline. We perform standardised and internationally validated psychiatric assessments (Diagnosis Infant and Preschool Assessment, Kiddie Schedule for Affective Disorders and Schizophrenia—Present and Lifetime Version) together with anxiety, attention deficit hyperactivity disorder, PTSD, parenting stress and somatic symptoms scales during five visits (baseline, 1 week after baseline, 1 month after baseline, 1 week after the end of the containment and 1 month after the end of the containment) in patients and their families enrolled during the containment and during three visits in case of enrolment after the containment. The inclusion period will end in 30 November 2020.

Ethics and dissemination

The protocol has been approved by the Ethics Committee of Cote d’Azur University « CERNI » (number 2020-59). All patients and their legal caregivers provide a written informed consent on enrolment in the study. We will submit the results of the study to relevant journals and offer national and international presentations. This study will enable better characterisation of the impact of the stay-at-home (related to COVID-19 pandemic) on the mental health of children and adolescents.

Trial registration number

NCT04498416.

Birthweight features of the infants of mothers diagnosed with diabetes at different gestational ages in South China from 2014 to 2018: a retrospective study

Por: Huang · X.-x. · Jiang · X.-M. · Zheng · Q.-X. · Chen · X.-Q. · Pan · Y.-Q.
Objectives

The primary purpose was to measure the birth weight of infants of mothers with gestational diabetes (IMGDs) at different gestational ages to develop new reference charts and curves for them. A further purpose was to compare them with those of 159 334 infants in China to provide more accurate reference charts for the diagnosis of suspected abnormal birth weight of IMGDs. The final purpose was to evaluate the key periods for such mothers to control their weight in line with the difference of fetal weight of each two neighbouring gestational ages.

Setting

A specialised hospital in South China

Participants

IMGDs born here from January 2014 to December 2018.

Primary and secondary outcome variables

Birth weight, gestational ages of IMGDs, gender and year of birth.

Results

Data of 14 311 singleton live births at the gestational weeks 25–42 here were collected. The proportions of low birth weight, normal birth weight and macrosomia were 7.26%, 87.04%, and 5.70%, respectively. The proportions of small for gestational age, appropriate for gestational age and large for gestational age were 5.69%, 84.42% and 9.89%, respectively. In the macrosomia group, the mean of all birth weight in 2017 decreased for the first time since 2014. Both the means of birth weight of male infants at gestational weeks 36–41 and of female at weeks 38–40 were greater than that of the 159 334 infants. The increase of each weekly mean of IMGDs at gestational weeks 27–31 and 33–35 was >10% compared with the former. Based on this, new reference charts of birth weight for IMGDs in terms of different gestational age and gender were formulated.

Conclusion

These charts may be applied as reference for more accurate diagnosis and quick treatment of abnormal birth weight. This study showed that the identification of key periods for fetal weight gain was helpful for the management of the weight of women with gestational diabetes.

New screening tool for neonatal nutritional risk in China: a validation study

Por: Zhou · M. · Li · Y. · Yin · H. · Zhang · X. · Hu · Y.
Objective

A neonatal nutritional risk screening tool (NNRST) was developed by using Delphi and analytic hierarchy processes in China. We verified the accuracy of this tool and analysed whether it effectively screened neonates with nutritional risk.

Design

Prospective validation study.

Setting and participants

In total, 338 neonates who were admitted to the neonatal unit of Children’s Hospital of Chongqing Medical University from May–July 2016 completed the study. Nutritional risk screening and length and head circumference measurements were performed weekly. Weight was measured every morning, and other relevant clinical data were recorded during hospitalisation.

Main outcome measures

We evaluated the sensitivity, specificity, validity, reliability, and positive and negative predictive value of the screening tool. Various characteristics of neonates in different risk groups were analysed to determine the rationality of the nutritional risk classification.

Results

The sensitivity, specificity, and positive and negative predictive values were 85.11%, 91.07%, 60.61% and 97.43%, respectively. The criterion validity was texted by the Spearman correlation analysis (r=0.530) and independent samples non-parametric tests (p=0.000). The content validity (Spearman correlation coefficient) was 0.321–0.735. The inter-rater reliability (kappa value) was 0.890. Among the neonatal clinical indicators, gestational age, birth weight, length, admission head circumference, admission albumin, admission total proteins, discharge weight, discharge length and head circumference decreased with increasing nutrition risk level; the length of stay and the rate of parenteral nutrition support increased with increasing nutrition risk level. In the comparison of complications during hospitalisation, the incidence of necrotising enterocolitis and congenital gastrointestinal malformation increased with increasing nutrition risk level.

Conclusion

The validation results for the NNRST are reliable. The tool can be used to preliminarily determine the degree of neonatal nutritional risk, but its predictive value needs to be determined in future large-sample studies.

Trial registration number

ChiCTR2000033743.

Efficacy of parent-mediated communication-focused treatment in toddlers with autism (PACT) delivered via videoconferencing: a randomised controlled trial study protocol

Por: Jurek · L. · Occelli · P. · Denis · A. · Amestoy · A. · Maffre · T. · Dauchez · T. · Oreve · M.-J. · Baghdadli · A. · Schroder · C. · Jay · A. · Zelmar · A. · Revah-Levy · A. · Gallifet · N. · aldred · C. · Garg · S. · Green · J. · Touzet · S. · Geoffray · M.-M. · On behalf of IFPAD study
Introduction

Intervention in the preschool period is currently recommended for autism spectrum disorder. Therapies delivered by parents are particularly suitable for young children. Preschool Autism Communication Trial (PACT) is a parent-mediated therapy that has shown a significant and sustained impact on autism symptom reduction. However, access to such evidence-based therapies for families is limited due to autism centres located in large urban areas. Using videoconferencing to deliver PACT training to parents may improve accessibility for families living in underserved areas.

Methods and analysis

This single-blind randomised controlled trial, involving six sites in France, will investigate the efficacy of a telehealth, videoconferencing-based, parent-mediated PACT therapy on autism symptoms, over a 12-month period. It will compare PACT plus treatment as usual (TAU) against TAU only in a cohort of 238 toddlers (119 per group) aged 18–36 months at inclusion and living with their families more than 40 min away from the specialist centres for autism. Primary outcome will include change of overall autism score on the Autism Diagnostic Observation Scale (ADOS) at 12 months. Secondary outcomes will measure change in child skills, child functioning, impact on parents (stress, health, priorities) and implementation characteristics. Repeated measures analyses will be used to test the effect of PACT intervention on the overall ADOS module 1 score over the 12-month study period. Linear mixed models will be used with time, treatment allocation and the interaction between treatment and time as fixed effects and individual variation as random effect.

Ethics and dissemination

This protocol (V.5, date: 25 October 2019) is approved by the French National Review Board (reference no 2018-A02516-49). The results will be disseminated via peer-reviewed journals

Trial registration number

NCT04244721.

Study protocol for randomised clinical trial comparing the effectiveness of side-lying sleep positioning to back-lying at reducing oxygen desaturation resulting from obstructive sleep apnoea in infants with cleft palate (SLUMBRS2)

Por: Metryka · A. · Cuniffe · C. · Evans · H. J. · Gavlak · J. G. · Hudson · N. · Kirby · N. · Lakhanpaul · M. · Lin · Y.-L. · Murray · C. · Rajai · A. · Robson · H. · Schilder · A. · Walsh · T. · Bruce · I.
Introduction

The craniofacial abnormalities found in infants with cleft palate (CP) decrease their airway patency and increase their risk of obstructive sleep apnoea (OSA). We hypothesise that optimising sleep position in infants with CP may improve airway patency and offer a ‘low-cost, high-impact’ intervention to prevent the negative impacts of OSA. Because cleft centres give inconsistent advice about sleep position: some recommend back-lying and others side-lying, we will compare these in a randomised controlled trial.

Methods and analysis

The aim is to determine the clinical effectiveness of side-lying as compared with back-lying sleep positioning in terms of reducing oxygen desaturation resulting from OSA in 244 infants aged 3–5 weeks of age, diagnosed with an isolated CP in/by UK cleft centres. Primary outcome is the 4% Oxygen Desaturation Index measured using pulse oximetry during sleep.

Research plan

1. Multicentre randomised controlled trial of side-lying compared with back-lying sleep positioning in reducing oxygen desaturation resulting from OSA in infants with CP at one month of age. 2. Internal pilot questionnaire-based study to support parents and clinicians regarding study participation, seeking to identify and address any barriers to recruitment. Monitoring data from the internal pilot will be used in the final analysis. 3. Co-development of new UK recommendations with Cleft Lip and Palate Association (CLAPA) regarding sleep position for infants with CP.

Ethics and dissemination

The study protocol has received the favourable opinion of the West Midlands-South Birmingham Research Ethics Committee. Study results will be published on affiliated webpages and in peer-reviewed publications and conference contributions.

Trial registration number

NCT04478201.

Identifying multimorbidity patterns of non-communicable diseases in paediatric inpatients: a cross-sectional study in Shanghai, China

Por: Chen · N. · Zhou · L. · Huang · J. · Yu · W. · Chen · C. · Jin · H. · Shi · X. · Yu · Z. · Liu · Q. · Yang · Y. · Wang · Z. · Shi · J.
Objectives

To enhance the understanding of non-communicable disease (NCD) multimorbidity in children who are inpatients by delineating the characteristics of and identifying patterns among paediatric inpatients with multimorbidity in China.

Design

Cross-sectional study.

Setting

Paediatric wards (n=17) in Pudong New Area, Shanghai, China.

Participants

A total of 193 432 paediatric inpatients in the electronic health record systems of 17 hospitals from 2011 to 2016 participated in the study, and 91 004 children with NCDs were extracted and classified based on International Classification of Diseases, 10th version codes.

Main outcome measures

Number of the NCDs and multimorbidity patterns of the paediatric inpatients.

Results

In total, 47.05% (95% CI 46.83 to 47.27) of the paediatric inpatients had one or more chronic diseases, and 16.30% (95% CI 16.14 to 16.46) had multimorbidity. Congenital anomalies accounted for 19.43% (95% CI 19.25 to 19.61) of the principal diagnoses among the paediatric inpatients. Five common multimorbidity patterns were identified: a neurological-respiratory cluster, a neurological-respiratory-ear cluster, a cardiovascular-circulatory cluster, a genitourinary cluster (boy group) and a musculoskeletal-connective cluster (10–18 years age group).

Conclusions

Multimorbidity in paediatric inpatients suggests that decisions about reasonable allocation of paediatric inpatient resources should be fully considered. Multimorbidity patterns in paediatric inpatients revealed that prevention, including innovative treatments targeting children, should be further studied.

Participation of young children with developmental disabilities: parental needs and strategies, a qualitative thematic analysis

Por: Coussens · M. · Vitse · F. · Desoete · A. · Vanderstraeten · G. · Van Waelvelde · H. · Van de Velde · D.
Objectives

Participation refers to a person’s involvement in activities and roles that provide interaction with others as well as engagement in family and community activities. Young children with developmental disabilities (DD) such as attention deficit hyperactive disorder, autism spectrum disorder and developmental coordination disorder are limited in their participation compared with their typically developing peers. This study aimed to obtain information regarding parental needs and strategies used to enable their child’s participation.

Design

A thematic inductive approach with in-depth interviews was used to explore parental experiences. Eleven women and two men, between 30 and 40 years of age, who had a child (4–9 years old) with a DD diagnosis based on Diagnostic and Statistical Manual of Mental Disorders criteria, participated in semistructured interviews.

Results

Two central themes emerged: parental needs and parental strategies used to enable their child’s participation. Parental needs were the following: increasing awareness, ameliorating parental burden, providing tailored interventions and supporting parents in finding suitable leisure activities. Parental strategies aimed at increasing their child’s resiliency, attaining maximal fit between activity requirements and child capacity, and creating inclusive opportunities and awareness.

Conclusions

Understanding what families’ needs are and how families use and integrate strategies within the context of their daily lives provides practitioners with insights needed to support families’ resiliency in promoting their children’s participation. The results have implications for professionals as this information can be used to inform, refine, or tailor participation-based and family-centred services.

Countermeasures against COVID-19: how to navigate medical practice through a nascent, evolving evidence base -- a European multicentre mixed methods study

Por: Eibensteiner · F. · Ritschl · V. · Stamm · T. · Cetin · A. · Schmitt · C. P. · Ariceta · G. · Bakkaloglu · S. · Jankauskiene · A. · Klaus · G. · Paglialonga · F. · Edefonti · A. · Ranchin · B. · Shroff · R. · Stefanidis · C. J. · Vandewalle · J. · Verrina · E. · Vondrak · K. · Zurowska
Objectives

In a previously published Delphi exercise the European Pediatric Dialysis Working Group (EPDWG) reported widely variable counteractive responses to COVID-19 during the first week of statutory public curfews in 12 European countries with case loads of 4–680 infected patients per million. To better understand these wide variations, we assessed different factors affecting countermeasure implementation rates and applied the capability, opportunity, motivation model of behaviour to describe their determinants.

Design

We undertook this international mixed methods study of increased depth and breadth to obtain more complete data and to better understand the resulting complex evidence.

Setting

This study was conducted in 14 paediatric nephrology centres across 12 European countries during the COVID-19 pandemic.

Participants

The 14 participants were paediatric nephrologists and EPDWG members from 12 European centres.

Main outcome measures

52 countermeasures clustered into eight response domains (access control, patient testing, personnel testing, personal protective equipment policy, patient cohorting, personnel cohorting, suspension of routine care, remote work) were categorised by implementation status, drivers (expert opinion, hospital regulations) and resource dependency. Governmental strictness and media attitude were independently assessed for each country and correlated with relevant countermeasure implementation factors.

Results

Implementation rates varied widely among response domains (median 49.5%, range 20%–71%) and centres (median 46%, range 31%–62%). Case loads were insufficient to explain response rate variability. Increasing case loads resulted in shifts from expert opinion-based to hospital regulation-based decisions to implement additional countermeasures despite increased resource dependency. Higher governmental strictness and positive media attitude towards countermeasure implementation were associated with higher implementation rates.

Conclusions

COVID-19 countermeasure implementation by paediatric tertiary care centres did not reflect case loads but rather reflected heterogeneity of local rules and of perceived resources. These data highlight the need of ongoing reassessment of current practices, facilitating rapid change in ‘institutional behavior’ in response to emerging evidence of countermeasure efficacy.

Epidemiology of chronic pain in children and adolescents: a protocol for a systematic review update

Por: Tutelman · P. R. · Langley · C. L. · Chambers · C. T. · Parker · J. A. · Finley · G. A. · Chapman · D. · Jones · G. T. · Macfarlane · G. J. · Marianayagam · J.
Introduction

Chronic pain, defined as persistent or recurring pain or pain lasting longer than 3 months, is a common childhood problem and can profoundly impact children’s physical, psychological and social functioning. The last comprehensive systematic review estimating the prevalence of chronic pain in children and adolescents was published in 2011. Since then, the literature on paediatric chronic pain has grown substantially. This manuscript outlines a protocol for an updated systematic review to provide updated estimates of the prevalence of various forms of chronic pain in children and adolescence. The review will also examine the relationship between sociodemographic and psychosocial factors related to chronic pain prevalence.

Methods and analysis

This review will follow Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We will search EMBASE, PubMed, CINAHL and PsycINFO for observational studies published in English between 2009 and 2020 reporting population-based estimates of chronic non-disease-related pain prevalence in children or adolescents (age ≤19 years). Two independent reviewers will screen the titles and abstracts retrieved from the search based on predefined eligibility criteria. The full texts of relevant studies will then be assessed by two reviewers. Studies meeting inclusion criteria will be categorised according to the type of pain investigated: headache only, abdominal pain only, back pain only, musculoskeletal pain, combined pain, general pain and other pain. Data will be extracted using customised forms and studies will be assessed for risk of bias using a 10-item tool developed by Hoy et al (2012). A narrative synthesis will summarise the prevalence estimates of paediatric chronic pain and associated sociodemographic and psychosocial correlates. Meta-analyses and meta-regressions will be performed if the data permit.

Ethics and dissemination

Ethical approval is not required. Findings will be disseminated through publication in an academic journal, presentations at conferences and in various media.

PROSPERO registration number

CRD42020198690.

Effect of consumption of animal milk compared to infant formula for non-breastfed/mixed-fed infants 6-11 months of age: a systematic review (protocol)

Por: Imdad · A. · Ehrlich · J. M. · Catania · J. · Tanner-Smith · E. · Smith · A. · Tsistinas · O. · Bhutta · Z. A.
Introduction

Prevalence rates of breastfeeding remain low even though the World Health Organization (WHO) and the American Academy of Pediatrics recommend exclusive breast feeding for the first 6 months of life in combination with appropriate complementary feeding beyond six 6 months of age. There have been several studies that address the implication of drinking animal milk and/or infant formula on children’s health and development when breast feeding is not offered during the first year of life. Vast improvements have been made in infant formula design, which may increase its benefits compared with animal’s milk. The objective of this review is therefore to synthesise the most recent evidence on the effects of the consumption of animal milk compared with infant formula in non-breastfed or mixed breastfed infants aged 6–11 months.

Methods and analysis

We will conduct a systematic review and meta-analysis of studies that assessed the effect of animal milk compared with formula or mixed-fed (breastmilk and formula) on infants aged 6–11 months. The primary outcomes of interest include anaemia, gastrointestinal blood loss, weight for age, height for age and weight for height. We will include randomised and non-randomised studies with a control group. We will use the Cochrane risk of bias tools to assess the risk of bias. We will use meta-analysis to pool findings if the identified studies are conceptually homogenous and data are available from more than one study. We will assess the overall quality of evidence using the Grading of Recommendations Assessment, Development, and Evaluation approach.

Ethics and dissemination

This is a systematic review, so no patients will be directly involved in the design or development of this study. The findings from this systematic review will be disseminated to relevant patient populations and caregivers and will guide the WHO’s recommendations on formula consumption versus animal milk in infants aged 6–11 months.

Trial registration number

CRD42020210925.

Protocol for a randomised clinical trial of multimodal postconcussion symptom treatment and recovery: the Concussion Essentials study

Por: Anderson · V. · Rausa · V. C. · Anderson · N. · Parkin · G. · Clarke · C. · Davies · K. · McKinlay · A. · Crichton · A. · Davis · G. A. · Dalziel · K. · Dunne · K. · Barnett · P. · Hearps · S. J. · Takagi · M. · Babl · F. E.
Introduction

While most children recover from a concussion shortly after injury, approximately 30% experience persistent postconcussive symptoms (pPCS) beyond 1-month postinjury. Existing research into the treatment of pPCS have evaluated unimodal approaches, despite evidence suggesting that pPCS likely represent an interaction across various symptom clusters. The primary aim of this study is to evaluate the effectiveness of a multimodal, symptom-tailored intervention to accelerate symptom recovery and increase the proportion of children with resolved symptoms at 3 months postconcussion.

Methods and analysis

In this open-label, assessor-blinded, randomised clinical trial, children with concussion aged 8–18 years will be recruited from The Royal Children’s Hospital (The RCH) emergency department, or referred by a clinician, within 17 days of initial injury. Based on parent ratings of their child’s PCS at ~10 days postinjury, symptomatic children (≥2 symptoms at least 1-point above those endorsed preinjury) will undergo a baseline assessment at 3 weeks postinjury and randomised into either Concussion Essentials (CE, n=108), a multimodal, interdisciplinary delivered, symptom-tailored treatment involving physiotherapy, psychology and education, or usual care (UC, n=108) study arms. CE participants will receive 1 hour of intervention each week, for up to 8 weeks or until pPCS resolve. A postprogramme assessment will be conducted at 3 months postinjury for all participants. Effectiveness of the CE intervention will be determined by the proportion of participants for whom pPCS have resolved at the postprogramme assessment (primary outcome) relative to the UC group. Secondary outcome analyses will examine whether children receiving CE are more likely to demonstrate resolution of pPCS, earlier return to normal activity, higher quality of life and a lower rate of utilisation of health services, compared with the UC group.

Ethics and dissemination

Ethics were approved by The RCH Human Research Ethics Committee (HREC: 37100). Parent, and for mature minors, participant consent, will be obtained prior to commencement of the trial. Study results will be disseminated at international conferences and international peer-reviewed journals.

Trial registration number

ACTRN12617000418370; pre-results.

Health outcomes, healthcare use and development in children born into or growing up in single-parent households: a systematic review study protocol

Por: Lut · I. · Woodman · J. · Armitage · A. · Ingram · E. · Harron · K. · Hardelid · P.
Introduction

Up to a quarter of all children globally live in single-parent households. Studies have concluded that children who grow up with continuously married parents have better health outcomes than children who grow up with single or separated parents. This is consistent for key health and development outcomes including physical health, psychological well-being and educational attainment. Possible explanations include higher poverty and time limitations of parental engagement within single-parent families, but these only represent a narrow range of mechanisms. We aim to identify and synthesise the evidence on how being born into and/or living in a single-parent household compared with living in a two-parent household as a child impacts health and development outcomes, healthcare use and factors that may be driving differences.

Methods and analysis

We will search PubMed, Scopus and ERIC and adapt our search terms for search engines and grey literature sites to include relevant conference abstracts and grey literature. We will restrict results to English language publications from 2000 to 2020 and screen against inclusion criteria. We will categorise main outcomes into five groups of outcomes: birth outcomes, mortality, physical health, mental health and development, and healthcare use. We will use the Newcastle-Ottawa Scale to assess the methodological quality of studies. Narrative synthesis will form the primary analysis in the review. Synthesis of effect estimates without meta-analysis will follow the Synthesis Without Meta-analysis guidelines.

Ethics and dissemination

All documents used are publicly accessible. We will submit results to a peer-reviewed journal and international social science conferences. We will communicate results with single-parent groups and relevant charitable organisations. This review will also be included in IL’s PhD thesis.

PROSPERO registration number

CRD42020197890.

Neonatal Severe Hyperbilirubinemia Online Registry in Jiangsu Province: protocol for a multicentre, prospective, open, observational cohort study

Por: Li · Q. · Deng · X. · Yan · J. · Sun · X. · Dong · X. · Chen · X. · Han · S. · Huo · J. · Yu · Z.
Introduction

Severe hyperbilirubinaemia in newborns can be easily complicated by acute bilirubin encephalopathy or even kernicterus, which could lead to neurological sequelae or death. However, there is no systematic study of the management of severe hyperbilirubinaemia in China. The Neonatal Severe Hyperbilirubinemia Online Registry study aims to investigate the management of jaundice before admission, risk factors and outcomes of severe hyperbilirubinaemia in a real-world setting in China.

Methods and analysis

This is a prospective, multicentre, open, observational cohort study. From May 2020 to April 2023, more than 2000 patients with neonatal severe hyperbilirubinaemia from 13 tertiary hospitals in Jiangsu Province will join the study. Demographic data and treatment information will be collected from their clinical data. Management measures for jaundice before admission will be collected by the WeChat applet (called ‘Follow-up of jaundice’) after being provided by the patient’s guardian using a mobile phone. Follow-up data will include cranial MRI examination results, brainstem auditory-evoked potential or automatic auditory brainstem response, physical examination results and Griffiths Development Scales-Chinese at the corrected ages of 3–6 months and 1 and 2 years. Results and conclusions will be recorded using ‘Follow-up of jaundice.’ In-hospital outcomes, including severity of hyperbilirubinaemia (severe, extreme, hazardous), acute bilirubin encephalopathy (mild, moderate, severe) and survival status (death or survival), will be collected at discharge. Follow-up outcomes will include loss to follow-up, survival status and kernicterus (yes or no) at 2 years. The research will enhance our comprehensive knowledge of jaundice management before admission, risk factors and outcomes of severe hyperbilirubinaemia in China, which will ultimately help to reduce the incidence of neonatal severe hyperbilirubinaemia.

Ethics and dissemination

Our protocol has been approved by the Medical Ethics Committee of Nanjing Maternity and Child Health Care Hospital. We will present our findings at national conferences and peer-reviewed paediatrics journals.

Trial registration number

NCT04251286.

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