Child Outcome Measures Research Articles

Child, family and professional views on valued communication outcomes for non-verbal children with neurodisability: A qualitative meta-synthesis.

There are many children with neurodisability who are unable to rely on speech to communicate and so use a range of augmentative and alternative communication (AAC) methods and strategies to get their message across. Current instruments designed to measure the outcomes of speech and language therapy interventions lack specific attention to communication outcomes that are valued by non-verbal children with neurodisability, their families and support networks. This qualitative meta-synthesis was conducted to identify valued communication outcomes to inform the next stage of developing a novel outcome measure. To systematically identify and synthesise the qualitative evidence about which communication outcomes non-verbal children with neurodisability, their family members, healthcare professionals and educators think are important to achieve, specifically which communication outcomes are most valued by: (1) non-verbal children with neurodisability; (2) parents or other family members of non-verbal children with neurodisability; and (3) professionals who work with non-verbal children with neurodisability. A systematic search of bibliographic databases and the grey literature was undertaken to identify qualitative studies that included evidence of views expressed by children, family members, healthcare professionals and educators on outcomes in relation to the communication of non-verbal children with neurodisability. All papers meeting the inclusion criteria were quality appraised using the Critical Appraisal Skills Programme Qualitative checklist, although none were excluded on this basis. The data synthesis involved organising coded data into descriptive themes which were then synthesised into analytical themes. We found 47 papers containing qualitative data meeting the inclusion criteria from research situated in 14 countries. The views of 35 children, 183 parents, six other family members, 42 healthcare professionals and 18 educators are represented in the review. The included studies contained very few data reported by children themselves; most data were provided by adults, especially parents. Three main analytical themes were identified: Experiences of communication and expectations; adapting to and acceptance of AAC; and becoming an autonomous communicator. This meta-synthesis brings together the limited qualitative research findings about what parents, professionals and children consider are important communication outcomes for non-verbal children with neurodisability. The synthesis identifies key gaps in our knowledge about the perspectives of children and their siblings. This synthesis will inform primary research to understand valued communication outcomes in this group, and ultimately the development of a patient-reported outcome measure (PROM) that can be used to demonstrate the effect of interventions, at both clinical and service levels. What is already known on the subject Studies of children with cerebral palsy and autism spectrum disorder indicate that at least 25% of children with these conditions are non-verbal. Studies on the health outcomes of children with neurodisability have identified that communication is rated as important by parents and health professionals. There is an evidence gap about which communication outcomes are important to non-verbal children, their families and the people who work with them. What this paper adds to the existing knowledge This is the first synthesis of data that relates to communication outcomes for non-verbal children with neurodisability. This qualitative meta-synthesis identifies from previous research studies the communication outcomes valued by children who are non-verbal, their parents or other family members, and the professionals who work with them. The findings will be used to shape further primary research and the development of a novel patient-reported communication outcome measure for non-verbal children with neurodisability. It is anticipated that this will be used by clinicians to measure the effect of their interventions. What are the practical and clinical implications of this work? Clinicians should reflect on parents' experiences of communication with their child before discussing potential outcomes with them. Gaining insight into the lived experience of communication for non-verbal children and their families will help healthcare professionals to understand which goals are important to them and why. Few studies have specifically asked which communication outcomes are important for non-verbal children with neurodisability. Further exploration is needed to determine which communication outcomes non-verbal children and their families would like to see included in outcome measures used by clinicians.

The Effect of Video-Based Action Observation Training and Live Action Observation Training on Motor Function, Activity Participation, and Secondary Outcome Measures in Children With Spastic Diparetic Cerebral Palsy: A Randomized Controlled Study.

This study aimed to investigate the effects of Video-Based Action Observation Training and Live Action Observation Training on motor function, activity participation, and secondary outcome measures in children with spastic diparetic cerebral palsy (CP). Thirty-nine children with spastic diparetic cerebral palsy, aged 5-14 years, with Gross Motor Function Classification System I-III, were distributed in equal numbers to any of the Video-Based Action Observation Training (conventional physiotherapy + Video-Based Action Observation Training), Live Action Observation Training (conventional physiotherapy + Live Action Observation Training), and control (conventional physiotherapy) groups through stratified randomization. For 8 weeks, action observation training groups received 20 minutes of conventional physiotherapy followed by 20 minutes of action observation training, and the control group received 40 minutes of conventional physiotherapy. Primary outcome measures were Gross Motor Function Measurement and Child and Adolescent Scale of Participation, secondary outcome measures were Pediatric Berg Balance Scale, timed-up-and-go test, five times sit-to-stand test (FTSST), Gillette Functional Assessment Questionnaire (GFAQ), and 1-minute walk test (1MWT). Improvements were observed in all other evaluation parameters of the groups except Gross Motor Function Measurement-lying and rolling (P = .066) in the Live Action Observation Training Group, and lying and rolling (P = .317) and crawling and kneeling (P = .063) motor subtests and Gillette Functional Assessment Questionnaire-walking scale (P = .513) in the control group. Comparisons of the increases in all other measurements between the groups, except for the dimensions of Gross Motor Function Measurement-lying and rolling (P = .172), were statistically significant (P < .05) and this difference was in favor of action observation training. It was found that 2 different AOTs applied in addition to conventional physiotherapy in children with spastic diparetic cerebral palsy were more effective on all outcomes than was conventional physiotherapy alone.

Trajectory of Infant Problematic Feeding Symptoms: Study Protocol.

Infants with developmental risk factors are more likely to have feeding problems and develop chronic feeding disorders. Early detection and understanding of the progression of problematic feeding and its relationship with a child's biological functioning and the family feeding environment will enhance effective symptom management and development of interventions to prevent pediatric feeding disorders. The New Through Two (NewThru2) feeding study protocol is described. Study aims are to (a) characterize symptoms of problematic feeding and trajectories of symptoms from pre-discharge from neonatal intensive care through age 24 months; (b) determine the relationship of child biological function at discharge with symptom characteristics and trajectories; (c) describe the child's feeding environment and its relationship to symptoms from discharge through 24 months; and (d) determine the relationship between problematic feeding symptoms and growth and developmental outcomes. NewThru2 is a prospective, longitudinal, mixed method study following over 200 infants who received care in a neonatal intensive care unit and were identified as at risk for compromised development. The study follows enrolled infants through 24 months of age. Symptoms of problematic feeding are measured pre-discharge by clinical observation and medical record review and post-discharge by parent report. Biological function is measured by medical history and cardiorespiratory and autonomic nervous system function during feeding prior to discharge. Child feeding environment is measured by strategies parents use to manage feeding, the effect of feeding on the parent and family, and the use of feeding services. A subset of parents is interviewed to achieve a contextual understanding of the family feeding environment. Child outcome measures include parent-reported feeding skills and clinician-reported growth and neurodevelopment. The results of this study will improve understanding of pediatric feeding disorders during a time of development sensitive to adequate nutrition and with infants at risk for developmental delays or impairments.

Outcome measures for children with speech sound disorder: an umbrella review

ObjectiveSpeech sound disorder (SSD) describes a ‘persistent difficulty with speech sound production that interferes with speech intelligibility or prevents verbal communication’. There is a need to establish which care pathways...

Putting Outcomes into Practice: The Implementation of a Framework of Outcome Measures within a Child and Family Service

Abstract Of utmost concern for effective child protection and child and family services is evidence-based practice. There is an onus of accountability on providers of therapeutic services to establish the merit and cost efficiency of their work. Developing standardised evidence-based outcome measures for children and families, towards which the service provider can strive, is assuredly required as a yardstick against which progress can be measured and modified. Yet, outcome measures will only work in conducive organisational conditions. Specifically, to operationalise a suite of outcome measures into a complex organisation, from administrative policy to grassroots practice, requires understanding of barriers and facilitators of implementation. Through funded research, we investigate these factors within the implementation of a new outcomes framework in a European child and family service. Following a literature review exercise, qualitative research findings from two focus groups targeted, respectively, at the managerial and front line practitioner level, illuminate complex conditions and underlying mechanisms, as well as attitudinal, resource and knowledge factors upon which implementation is predicated. We conclude with recommendations around establishing sustainable conditions and arrangements in organisations, to ensure outcome measures act as effective instruments, rather than costly and dispensable paper exercises.

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children’s hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage ‘buy-in’ and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

Parent-Mediated Naturalistic Developmental Behavioral Interventions for Young Autistic Children: A Systematic Literature Review of Single-Case Research

AbstractNaturalistic developmental behavioral interventions (NDBIs) are a class of supports that may lend themselves to a parent-mediated approach. This systematic literature review synthesizes single-case research evaluations of parent-mediated NDBIs for young autistic children. Of the 353 articles screened, 17 were eligible for inclusion. Child outcome measures included engagement, joint attention, language/communication, imitation, and ‘compliance’/avoidance. Most studies found positive effects for at least some children on at least one measure. However, there were no consistently positive effects across studies. Most parents increased their NDBI fidelity, but many did not reach specified fidelity criteria. Only three studies met all Council of Exceptional Children quality indicators. These results suggest that parent-mediated NDBIs are a promising approach to supporting young autistic children, but more high-quality research is needed.

Outcome measures in pediatric chronic inflammatory demyelinating polyradiculoneuropathy.

Objective outcome measures in children undergoing treatment for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) are lacking. The aim of the study was to record serial grip strength and motor nerve conduction studies to assess interval change. This was a retrospective review of 16 children (8 females and 8 males; median age, 9.7 years; interquartile range, 6-13 years) with CIDP followed at a tertiary children's hospital from 2013 to 2021. Subjects were treated with intravenous immunoglobulin (IVIG). Right and left grip strength measurements were obtained at each clinic visit using a handheld dynamometer. Annual right median motor nerve conduction study data were recorded during the study period. Mean duration of follow-up was 2.9 years. Grip strength (right: 0.19 kg/month, p < 0.001; left 0.23 kg/month, p < 0.001) and median F-wave latencies (-0.23/month, p = 0.015) showed significant improvement over time. Akaike information criterion showed time + IVIG frequency <21 days as best fit for grip strength and distal compound muscle action potential amplitude. Our study results indicate serial grip strength measurements are a feasible and objective way to assess motor strength improvement in children with CIDP receiving immunotherapy.

Intra-breath changes in respiratory mechanics are sensitive to history of respiratory illness in preschool children: the SEPAGES cohort

BackgroundIntra-breath oscillometry has been proposed as a sensitive means of detecting airway obstruction in young children. We aimed to assess the impact of early life wheezing and lower respiratory tract illness on lung function, using both standard and intra-breath oscillometry in 3 year old children.MethodsHistory of doctor-diagnosed asthma, wheezing, bronchiolitis and bronchitis and hospitalisation for respiratory problems were assessed by questionnaires in 384 population-based children. Association of respiratory history with standard and intra-breath oscillometry parameters, including resistance at 7 Hz (R7), frequency-dependence of resistance (R7 − 19), reactance at 7 Hz (X7), area of the reactance curve (AX), end-inspiratory and end-expiratory R (ReI, ReE) and X (XeI, XeE), and volume-dependence of resistance (ΔR = ReE-ReI) was estimated by linear regression adjusted on confounders.ResultsAmong the 320 children who accepted the oscillometry test, 281 (88%) performed 3 technically acceptable and reproducible standard oscillometry measurements and 251 children also performed one intra-breath oscillometry measurement. Asthma was associated with higher ReI, ReE, ΔR and R7 and wheezing was associated with higher ΔR. Bronchiolitis was associated with higher R7 and AX and lower XeI and bronchitis with higher ReI. No statistically significant association was observed for hospitalisation.ConclusionsOur findings confirm the good success rate of oscillometry in 3-year-old children and indicate an association between a history of early-life wheezing and lower respiratory tract illness and lower lung function as assessed by both standard and intra-breath oscillometry. Our study supports the relevance of using intra-breath oscillometry parameters as sensitive outcome measures in preschool children in epidemiological cohorts.

Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People.

Qualitative concept elicitation can develop meaningful patient-reported outcome measures for children and young people; however, the methods used for concept elicitation are often underreported for this population. This paper provides in-depth insight into the methods used for concept elicitation with children and young people, with a focus on key stages of concept elicitation that are challenging or unique to doing this research with children. Drawing on our experiences of developing wellbeing measures for children and young people aged 6-15 years, we detail the processes followed in our qualitative concept elicitation work, covering issues related to sampling and recruitment, encouraging informed assent and freedom over children and young people's involvement in concept elicitation, and the use of creative and participatory methods to develop measure items. We provide reflections on the approaches taken to navigate challenging aspects of concept elicitation with children and young people. Our reflections suggest that using existing links and online recruitment methods can help to navigate organisational gatekeepers, and using appropriate processes to develop study information and obtain informed assent can ensure that research is inclusive and that children have the freedom to decide whether to be involved. Our adaptation of a creative and participatory activity to generate concepts for measure items suggests that such approaches can be engaging and may help to give children greater control over their participation. In detailing our methods, we hope to have developed a useful resource for other researchers, while highlighting the value of transparent reporting in this area.

Is well-becoming important for children and young people? Evidence from in-depth interviews with children and young people and their parents

PurposeThis study explores how important well-becoming factors appear to be to children during childhood. We define well-becoming as the indicators which predict children and young people’s future wellbeing and opportunities. The priority for this work was to explore whether well-becoming might be an important factor to include in outcome measures for children and young people. The inclusion of well-becoming indicators could ensure that opportunities to invest in promoting wellbeing in children’s futures are not missed.MethodsIn-depth, qualitative interviews (N = 70) were undertaken with children and young people aged 6–15 years and their parents. Analysis used constant comparison and framework methods to investigate whether well-becoming factors were considered important by informants to children and young people’s current wellbeing.ResultsThe findings of the interviews suggested that children and young people and their parents are concerned with future well-becoming now, as factors such as future achievement, financial security, health, independence, identity, and relationships were identified as key to future quality of life. Informants suggested that they considered it important during childhood to aspire towards positive outcomes in children and young people’s futures.ConclusionThe study findings, taken alongside relevant literature, have generated evidence to support the notion that future well-becoming is important to current wellbeing. We have drawn on our own work in capability wellbeing measure development to demonstrate how we have incorporated a well-becoming attribute into our measures. The inclusion of well-becoming indicators in measures could aid investment in interventions which more directly improve well-becoming outcomes for children and young people.

What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy

PurposeThere are limited psychometric data on outcome measures for children with Developmental Epileptic Encephalopathies (DEEs), beyond measuring seizures, and no data to describe meaningful change. This study aimed to explore parent perceptions of important differences in functional abilities that would guide their participation in clinical trials.MethodsThis was a descriptive qualitative study. Semi-structured one-on-one interviews were conducted with 10 families (15 parent participants) with a child with a SCN2A-DEE [8 male, median (range) age 7.5 (4.5–21)] years. Questions and probes sought to understand the child’s functioning across four domains: gross motor, fine motor, communication, and activities of daily living. Additional probing questions sought to identify the smallest differences in the child’s functioning for each domain that would be important to achieve, if enrolling in a traditional therapy clinical trial or in a gene therapy trial. Data were analyzed with directed content analysis.ResultsExpressed meaningful differences appeared to describe smaller developmental steps for children with more limited developmental skills and more complex developmental steps for children with less limited skills and were different for different clinical trial scenarios. Individual meaningful changes were described as important for the child’s quality of life and to facilitate day-to-day caring.ConclusionMeaningful change thresholds have not been evaluated in the DEE literature. This study was a preliminary qualitative approach to inform future studies that will aim to determine quantitative values of change, applicable to groups and within-person, to inform interpretation of specific clinical outcome assessments in individuals with a DEE.

Design and protocol of a clinic-based comparative effectiveness randomized controlled trial to determine the feasibility and effectiveness of food prescription program strategies in at-risk pediatric populations

BackgroundProduce prescription programs are gaining traction in the U.S.; however, data on the impact of such approaches in pediatric populations are limited. The purpose of our clinic-based comparative effectiveness randomized controlled trial (CE RCT) is to evaluate the preliminary effectiveness of two produce prescription strategies (at-home delivery and grocery store vouchers) implemented by the Brighter Bites non-profit organization in improving obesity-related health outcomes and dietary behaviors among low-income 5–12-year-olds in Houston, Texas. This paper presents the study design, intervention components, and the study measures. MethodsParticipants (n = 150) are being recruited from two pediatric clinics in Houston, Texas. Child eligibility criteria are aged 5–12 years, Medicaid recipients, body-mass index (BMI) percentile ≥85 and living within 10 miles of a Brighter Bites distribution site. Following consent and baseline measures, children are randomized into one of three arms: (1) Bi-weekly $25 vouchers redeemable for produce at stores (n = 50), (2) Bi-weekly produce delivery to participants' homes through DoorDash (n = 50), and (3) wait-list usual care controls (n = 50). Intervention participants also receive Brighter Bites nutrition education materials. Main child outcome measures are BMI z-scores, blood pressure, hemoglobin A1c, liver panels, and lipid panels. Other outcomes including household food insecurity, child diet quality, and home nutrition environment will be collected through parent surveys. Outcome measures are collected at baseline and post-intervention. Process evaluation will measure program dosage, reach, acceptability, and feasibility. ConclusionsOur paper presents the design and next steps to ensure the successful implementation of a produce prescription program in a pediatric clinic setting.

Temporal discounting in children and adolescents with and without attention-deficit/hyperactivity disorder: a comparison of four scoring methods

ABSTRACT Temporal discounting (TD) tasks measure the preference for immediate rewards over larger delayed rewards and have been widely used to study impulsivity in children and adolescents with Attention-Deficit/Hyperactivity Disorder (ADHD). Relatively impulsive individuals tend to show high inconsistency in their choices, which makes it difficult to determine commonly used TD outcome measures (e.g., area under the curve, AUC). In this study, we leveraged two published datasets to compare four methods to compute TD outcome measures in children and adolescents (8–17 years) with (n = 107) and without ADHD (n = 128): two predetermined rules methods, a proportion method, and logistic regression. In both datasets, when using the two predetermined rules methods and the proportion method, TD outcomes were highly correlated and group differences in TD were similar. When using logistic regression, a large proportion of AUCs (95% in dataset 1; 33% in dataset 2) could not be computed due to inconsistent choice patterns. These findings indicate that predetermined rules methods (for studies with small sample sizes and experienced raters) and a proportion method (for studies with larger sample sizes or less experienced raters) are recommended over logistic regression when determining subjective reward values for participants with inconsistent choice patterns.

An Integrative Review of Outcome Measures Used in Occupational Therapy Research for School-age Children with Cerebral Palsy in Iran

Introduction: Identifying the currently-used outcome measures for clients with cerebral palsy (CP) in the Iranian occupational therapy (OT) research can declare the new trend of such researchers and identify the more focused domains regarding such individuals. Accordingly, this integrative review aims to define the utilized outcome measures for school-age children with CP in the Iranian OT research.&#x0D; Materials and Methods: We conducted an integrated review of online Persian and English databases, namely PubMed, Web of Science, Otseeker, Cochrane, Medline, Embase, CINAHL, PsycInfo, OVID Medline, Magiran, ISC, SID, IranMEDEX, Irandoc, and IRCT, along with the Google Scholar search engine from January 2000 to March 2021.&#x0D; Results: Out of 605 potentially relevant articles that were initially retrieved, 51 articles met the inclusion criteria, and their used outcome measure(s) was identified. A total of 42 identified outcome measure(s) were not diagnosis-specific and or child-report. A maximum of 15 tools, which assessed the motor components of CP children based on a biomedical bottom-up approach, was commonly used by the majority of studies.&#x0D; Conclusion: Most Iranian OT studies utilized bottom-up outcome measures. Iranian OT researchers were suggested to highlight the current paradigm of OT in their research regarding school-age children with CP to comprehensively address their multiple challenges and needs according to a top-down client-centered approach.

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review

BackgroundMeasuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC).MethodsArksey and O’Malley’s 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published.ResultsOf 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions.ConclusionThe identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC.Trial registrationReview registration: (https://osf.io/yfch2/) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).

Antidepressants in pregnancy: applying causal epidemiological methods to understand service-use outcomes in women and long-term neurodevelopmental outcomes in exposed children.

Antidepressants are commonly prescribed during pregnancy, despite a lack of evidence from randomised trials on the benefits or risks. Some studies have reported associations of antidepressants during pregnancy with adverse offspring neurodevelopment, but whether or not such associations are causal is unclear. To study the associations of antidepressants for depression in pregnancy with outcomes using multiple methods to strengthen causal inference. This was an observational cohort design using multiple methods to strengthen causal inference, including multivariable regression, propensity score matching, instrumental variable analysis, negative control exposures, comparison across indications and exposure discordant pregnancies analysis. This took place in UK general practice. Participants were pregnant women with depression. The interventions were initiation of antidepressants in pregnancy compared with no initiation, and continuation of antidepressants in pregnancy compared with discontinuation. The maternal outcome measures were the use of primary care and secondary mental health services during pregnancy, and during four 6-month follow-up periods up to 24 months after pregnancy, and antidepressant prescription status 24 months following pregnancy. The child outcome measures were diagnosis of autism, diagnosis of attention deficit hyperactivity disorder and intellectual disability. UK Clinical Practice Research Datalink. Data on 80,103 pregnancies were used to study maternal primary care outcomes and were linked to 34,274 children with at least 4-year follow-up for neurodevelopmental outcomes. Women who initiated or continued antidepressants during pregnancy were more likely to have contact with primary and secondary health-care services during and after pregnancy and more likely to be prescribed an antidepressant 2 years following the end of pregnancy than women who did not initiate or continue antidepressants during pregnancy (odds ratioinitiation 2.16, 95% confidence interval 1.95 to 2.39; odds ratiocontinuation 2.40, 95% confidence interval 2.27 to 2.53). There was little evidence for any substantial association with autism (odds ratiomultivariableregression 1.10, 95% confidence interval 0.90 to 1.35; odds ratiopropensityscore 1.06, 95% confidence interval 0.84 to 1.32), attention deficit hyperactivity disorder (odds ratiomultivariableregression 1.02, 95% confidence interval 0.80 to 1.29; odds ratiopropensityscore 0.97, 95% confidence interval 0.75 to 1.25) or intellectual disability (odds ratiomultivariableregression 0.81, 95% confidence interval 0.55 to 1.19; odds ratiopropensityscore 0.89, 95% confidence interval 0.61 to 1.31) in children of women who continued antidepressants compared with those who discontinued antidepressants. There was inconsistent evidence of an association between initiation of antidepressants in pregnancy and diagnosis of autism in offspring (odds ratiomultivariableregression 1.23, 95% confidence interval 0.85 to 1.78; odds ratiopropensityscore 1.64, 95% confidence interval 1.01 to 2.66) but not attention deficit hyperactivity disorder or intellectual disability; however, but results were imprecise owing to smaller numbers. Several causal-inference analyses lacked precision owing to limited numbers. In addition, adherence to the prescribed treatment was not measured. Women prescribed antidepressants during pregnancy had greater service use during and after pregnancy than those not prescribed antidepressants. The evidence against any substantial association with autism, attention deficit hyperactivity disorder or intellectual disability in the children of women who continued compared with those who discontinued antidepressants in pregnancy is reassuring. Potential association of initiation of antidepressants during pregnancy with offspring autism needs further investigation. Further research on larger samples could increase the robustness and precision of these findings. These methods applied could be a template for future pharmaco-epidemiological investigation of other pregnancy-related prescribing safety concerns. This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (15/80/19) and will be published in full in Health Technology Assessment; Vol. 27, No. 15. See the NIHR Journals Library website for further project information.

Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions

BackgroundUpper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population with a rare musculoskeletal condition, clinicians’ and patients’ perspectives and involvement is a crucial and necessary step. This study sought to determine the most clinically useful items for an outcome measure of UE function for children with AMC as defined by caregivers and clinicians.MethodsTo ensure the perspectives and needs of caregivers of children with AMC and clinicians were considered in the development of the UE measure for AMC, a Nominal Group technique (NGT) with caregivers of children with AMC (phase 1) followed by a three-round survey with clinicians (phase 2) were carried out.ResultsPhase 1: Eleven individuals participated in the nominal group technique and identified 32 items. The most important items were Picking up an object (n = 11), Eating (n = 10), Reaching mouth (n = 10), Getting out of bed (n = 10). Phase 2: Invitations to participate to an online survey was sent to 47 experts in the field of AMC, 20 participants completed round 1, 15 completed round 2 and 13 completed round 3. Throughout the survey, participants were asked about movement required to screen the UE, essential domains to be included in the measure, establishing a scoring guide and identifying tasks associated with joint motion and position.ConclusionA preliminary version of an UE AMC-specific outcome measure was developed with the help of caregivers’ perspectives and expert opinions.

INTERNATIONAL FIELD TEST OF LIMB-Q KIDS: AN INTERNATIONALLY APPLICABLE PATIENT-REPORTED OUTCOME MEASURE FOR LOWER LIMB DIFFERENCES

IntroductionLIMB-Q Kids is a new patient-reported outcome measure (PROM) for children with Lower limb differences (LLDs). The objective is to conduct an international field test study.Materials &amp; MethodsA mixed method multiphase approach was used to develop LIMB-Q Kids. In phase one, a systematic review was conducted to identify concepts from existing PROMs used in research with children with LLDs. A preliminary conceptual framework derived from the systematic review informed an international qualitative study. The data from qualitative interviews were used to form the LIMB-Q Kids, which was further refined through multiple rounds of cognitive debriefing interviews with children. Input was obtained from parents and healthcare professionals from Australia, Canada, Ethiopia, India, UK, and the USA. LIMB-Q Kids was translated and culturally adapted into multiple languages.ResultsThe final field-test version consists of 11 scales (159 items) that measure appearance, physical function, symptoms (hip, knee, ankle, foot, and leg), leg-related distress, and school, social and psychological function. This version was rigorously translated into Danish and German. Translations that are in progress include Arabic, Finnish, Hindi, Swahili, Portuguese, Spanish, and Luganda. An international field-test study is underway in nine countries (15 sites with a target recruitment of 150 participants per country). At the time of abstract submission, 190 patients from seven sites have completed LIMB-Q Kids. The UK collaborative has worked on language adaption for the UK and is currently validating the score across five paediatric limb reconstruction units.ConclusionsNo internationally applicable PROM exists for children with LLDs. We present the current progress in developing and validating such a score. Data from the international field-test study will be used to reduce items and perform psychometric testing of LIMB-Q Kids. The rigorous translation and cultural adaption process will provide versions of LIMB-Q Kids in different languages. Once completed, the LIMB-Q Kids will provide a common metric for outcome assessment for children with lower limb differences internationally.

Early childhood education and care quality and associations with child outcomes: A meta-analysis.

The effectiveness of early childhood education and care (ECEC) programs for children's development in various domains is well documented. Adding to existing meta-analyses on associations between the quality of ECEC services and children's developmental outcomes, the present meta-analysis synthesizes the global literature on structural characteristics and indicators of process quality to test direct and moderated effects of ECEC quality on children's outcomes across a range of domains. A systematic review of the literature published over a 10-year period, between January 2010 and June 2020 was conducted, using the databases PsychInfo, Eric, EbscoHost, and Pubmed. In addition, a call for unpublished research or research published in the grey literature was sent out through the authors' professional network. The search yielded 8,932 articles. After removing duplicates, 4,880 unique articles were identified. To select articles for inclusion, it was determined whether studies met eligibility criteria: (1) study assessed indicators of quality in center-based ECEC programs catering to children ages 0-6 years; and (2) study assessed child outcomes. Inclusion criteria were: (1) a copy of the full article was available in English; (2) article reported effect size measure of at least one quality indicator-child outcome association; and (3) measures of ECEC quality and child outcomes were collected within the same school year. A total of 1,044 effect sizes reported from 185 articles were included. The averaged effects, pooled within each of the child outcomes suggest that higher levels of ECEC quality were significantly related to higher levels of academic outcomes (literacy, n = 99: 0.08, 95% C.I. 0.02, 0.13; math, n = 56: 0.07, 95% C.I. 0.03, 0.10), behavioral skills (n = 64: 0.12, 95% C.I. 0.07, 0.17), social competence (n = 58: 0.13, 95% C.I. 0.07, 0.19), and motor skills (n = 2: 0.09, 95% C.I. 0.04, 0.13), and lower levels of behavioral (n = 60: -0.12, 95% C.I. -0.19, -0.05) and social-emotional problems (n = 26: -0.09, 95% C.I. -0.15, -0.03). When a global assessment of child outcomes was reported, the association with ECEC quality was not significant (n = 13: 0.02, 95% C.I. -0.07, 0.11). Overall, effect sizes were small. When structural and process quality indicators were tested separately, structural characteristics alone did not significantly relate to child outcomes whereas associations between process quality indicators and most child outcomes were significant, albeit small. A comparison of the indicators, however, did not yield significant differences in effect sizes for most child outcomes. Results did not provide evidence for moderated associations. We also did not find evidence that ECEC quality-child outcome associations differed by ethnic minority or socioeconomic family background. Despite the attempt to provide a synthesis of the global literature on ECEC quality-child outcome associations, the majority of studies included samples from the U.S. In addition, studies with large samples were also predominately from the U.S. Together, the results might have been biased towards patterns prevalent in the U.S. that might not apply to other, non-U.S. ECEC contexts. The findings align with previous meta-analyses, suggesting that ECEC quality plays an important role for children's development during the early childhood years. Implications for research and ECEC policy are discussed.