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Objectives: A prospective parallel cohort trial was conducted to compare outcomes of patients treated with maxillary protraction vs LeFort 1 maxillary advancement surgery.Setting and Sample Population: The primary site for the clinical trial is Children's Hospital Los Angeles; the satellite test site is Seattle Children's Hospital. All patients have isolated cleft lip and palate and a skeletal Class III malocclusion.Material and Methods: A total of 50 patients, ages 11-14, will be recruited for the maxillary protraction cohort. The maxillary surgery cohort consists of 50 patients, ages 16-21, who will undergo LeFort 1 maxillary advancement surgery. Patients with additional medical or cognitive handicaps were excluded from the study.Results: Current recruitment of patients is on track to complete the study within the proposed recruitment period.Conclusion: This observational trial is collecting information that will examine dental, skeletal, financial and quality-of-life issues from both research cohorts. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice has the potential to align with the directive to reduce inequalities by United Nations Sustainable Development Goal 10. Telepractice additionally addresses a national digital health strategic plan for accessible digitally enabled models of care. To plan improvements, it is essential to understand the experience of telepractice for people with disability, which may be achieved through an approach such as journey mapping. The current article provides both a disability‐specific case study and a methodological guide for the inclusion of customers and clinicians in the meaningful redevelopment of services. The Perth, Australia‐based case study aimed to gain insights into the experience of telepractice for people with disability. The methodological aim describes using co‐design to produce a journey map in collaboration with customers and clinicians, for potential replication in a wide range of health and social care contexts. Method: Interview transcripts gathered from a cohort of customer participants (n = 17) were used to inform the journey map. A group of customers (n = 5) and clinicians plus one manager (n = 5) distributed the findings onto a customer experience journey map during a co‐design workshop. The journey map describes the emotional experience and actions taken, along five phases of a timeline through telepractice service interactions: (1) before, (2) selecting telepractice, (3) telepractice preparation, (4) during telepractice sessions and (5) after. Results: A journey map visualisation of customer experiences was produced that identified strengths of telepractice service delivery (flexibility) while noting challenges (with technology) as opportunities for improvement. The consensus of participants was the desire to have access to telepractice currently and in the future, in addition to in‐person delivery. Conclusion: These findings are valuable in the context of advocating for the incorporation of customers and clinicians through co‐design workshops in the content analysis and creation of a journey map that is representative of the lived experience of accessing telepractice services. Patient or Public Contribution: The paper forms part of a larger co‐design process that included customer participants throughout the design and planning of the project, inclusion of a peer researcher and the co‐designers in the workshops, journey map and this article production. [ABSTRACT FROM AUTHOR]

Background: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch performance status scales for the HNC population are lacking, we conducted this study to translate the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and to validate this version. Methods & Procedures: The D‐PSS‐HN was translated into Dutch according to the internationally described cross‐cultural adaptation process. It was administered to HNC patients and together with the Functional Oral Intake Scale completed by a speech and language pathologist at five different time points during the first 5 weeks of (chemo)radiotherapy. Patients were asked each time to complete the Functional Assessment of Cancer Therapy and the Swallowing Quality of Life Questionnaire. Pearson correlation coefficients were used to calculate convergent and discriminant validity and the evolution of D‐PSS‐HN scores was assessed by means of linear mixed models. Outcomes & Results: A total of 35 patients were recruited and > 98% of the clinician‐rated scales were completed. Convergent and discriminant validity were demonstrated, with all correlations rs between 0.467 and 0.819, and between 0.132 and 0.256, respectively. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. Conclusion & Implications: The D‐PSS‐HN is a valid and reliable instrument to assess performance status in patients with HNC treated with (chemo)radiotherapy. It is a useful tool to measure HNC patients' current diet level and functional abilities to perform daily life activities. WHAT THIS PAPER ADDS: What is already known on the subject: Acute and late toxicities in patients treated with (chemo)radiotherapy for HNC are common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. However, Dutch performance status scales for the HNC population are lacking. Therefore, we translated the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and validated this version. What this paper adds to existing knowledge: We translated the PSS‐HN and demonstrated its convergent and discriminant validity. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. What are the potential or actual clinical implications of this work?: The D‐PSS‐HN is a useful tool to measure HNC patients' functional abilities to perform daily life activities. The tool can easily be used in clinical settings: since data collection duration is very short, this facilitates clinical (and research‐related) implementation of the scale. Patients' individual needs could be identified by using the D‐PSS‐HN, resulting in more appropriate approaches and (early) referrals if needed. Interdisciplinary communication could be facilitated. [ABSTRACT FROM AUTHOR]

Background: At the beginning of the 21st century, international adoptions of children with cleft lip and/or palate increased dramatically in Sweden. Many children arrived partially or totally unoperated, despite being at an age when palatoplasty has usually been performed. To date, the speech development of internationally adopted (IA) children has been described up to age 7–8 years, but later development remains unstudied. Aims: To investigate speech development between ages 5 and 10 years in children born with cleft lip and palate (CLP) adopted from China and to compare them with non‐adopted (NA) children with CLP. A secondary aim was to compare the frequencies of secondary palatal surgery and number of visits to a speech and language pathologist (SLP) between the groups. Methods & Procedures: In a longitudinal study, 23 IA children from China were included and matched with 23 NA children born in Sweden. Experienced SLPs blindly reassessed audio recordings from routine follow‐ups at ages 5 and 10 years. Velopharyngeal function (VPF) was assessed with the composite score for velopharyngeal competence (VPC‐Sum) for single words and rated on a three‐point scale (VPC‐Rate) in sentence repetition. Target sounds in words and sentences were phonetically transcribed. Per cent correct consonants (PCC) were calculated at word and sentence levels. For in‐depth analyses, articulation errors were divided into cleft speech characteristics (CSCs), developmental speech characteristics (DSCs) and s‐errors. Information on secondary palatal surgery and number of visits to an SLP was collected. Outcomes & Results: VPF differed significantly between the groups at both ages when assessed with VPC‐Sum, but not with VPC‐Rate. Regardless of the method for assessing VPF, a similar proportion in both groups had incompetent VPF but fewer IA than NA children had competent VPF at both ages. IA children had lower PCC at both ages at both word and sentence levels. More IA children had CSCs, DSCs and s‐errors at age 5 years, and CSCs and s‐errors at age 10. The development of PCC was significant in both groups between ages 5 and 10 years. The proportion of children receiving secondary palatal surgery did not differ significantly between the groups, nor did number of SLP visits. Conclusions & Implications: CSCs were more persistent in IA children than in NA children at age 10 years. Interventions should target both cleft and DSCs, be comprehensive and continue past the pre‐school years. WHAT THIS PAPER ADDS: What is already known on this subject: At the beginning of the 21st century, IA children with cleft lip and/or palate arrived in Sweden partially or totally unoperated, despite being at an age when palatoplasty has usually been performed. Studies up to age 7–8 years show that adopted children, compared with NA peers, have poorer articulation skills, demonstrate both cleft‐related and developmental articulation errors, and are more likely to have velopharyngeal incompetence. Several studies also report that adopted children more often require secondary palatal surgery due to fistulas, dehiscence or velopharyngeal incompetence compared with NA peers. What this paper adds to existing knowledge: This longitudinal study provides additional knowledge based on longer follow‐ups than previous studies. It shows that the proportion of children assessed to have incompetent VPF was similar among IA and NA children. It was no significant difference between the groups regarding the proportion that received secondary palatal surgery. However, fewer IA children were assessed to have a competent VPF. Developmental articulation errors have ceased in most IA and all NA children at age 10 years, but significantly more adopted children than NA children still have cleft‐related articulation errors. What are the potential or actual clinical implications of this work?: Speech and language therapy should target both cleft‐related and developmental articulation errors. When needed, treatment must be initiated early, comprehensive, and continued past the pre‐school years, not least for adopted children. [ABSTRACT FROM AUTHOR]

Background: Communication and cognitive impairments are known barriers to shared decision‐making. Most people diagnosed with motor neurone disease (MND) will develop a motor speech impairment over the disease course. Some will develop cognitive, linguistic or behavioural disturbance. Despite this, the impact of communication and cognitive impairment on personal healthcare decision‐making in MND is not well known. Aims: This exploratory, longitudinal study aimed to capture the perspectives of people living with MND (plwMND) and family members on managing their healthcare with, or in anticipation of, a communication impairment. Methods & Procedures: Semi‐structured interviews and functional assessments were conducted with plwMND and family members over one to three time points between December 2017 and January 2020. Participants were recruited from a specialist MND clinic using a maximum variation sampling approach. Interview transcripts were analysed using trajectory data analysis: a matrix‐based approach for thematic analysis of longitudinal data. The study was underpinned by interpretive descriptive methodology. Outcomes & Results: A total of 19 plwMND with a range of MND phenotypes and 15 family members were recruited. Disease progression and participant withdrawal resulted in attrition, however 12 plwMND and seven family members participated at all three time points. Consistent cognitive screening was not feasible, which limited the opportunity to explore the impact of cognitive change. An overarching theme 'Communicating takes effort' was identified and illustrates the efforts required to compensate for, or circumnavigate, impairments to maintain involvement in healthcare. Assistance from family and accommodation from healthcare professionals (HCPs) was needed for ongoing engagement. Where plwMND were dependent on alternative communication devices, this assistance was essential and primarily carried out by family members. Despite these efforts, the quality, quantity and accuracy of communication were sometimes compromised. Participants equated good communication with receiving good healthcare, and some expressed anxiety in the anticipation of being unable to express their needs to healthcare workers. Conclusion & Implications: Communication impairment has a direct impact on healthcare involvement. This study demonstrates the effort required by plwMND and their carers to maintain or maximize ongoing involvement. This effort may not always be visible to HCPs. This information may prompt clinicians to consider the best ways to conduct clinical consultations to accommodate patients' abilities. Compromised communication experiences can be moderated by accommodations and support from HCPs and appropriate adjustments in the health system. Asking patients about their communication preferences and needs, allowing extra time and conducting multidisciplinary sessions are examples of such support. What this paper adds: What is already known on this subject?: Communication and cognitive impairments are known contributors to negative health outcomes and barriers to shared decision‐making generally. The existing literature in decision‐making in MND does not address the specific impact of these impairments on personal healthcare involvement for plwMND and their carers. What this paper adds to existing knowledge?: This paper reports the findings of a research project that interviewed 19 plwMND and 15 carers on one to three occasions over a 26‐month period to obtain their perspectives of the impact of communication on healthcare involvement. Whilst a priori the intention was to look at both communicative and cognitive decline, only the former was achieved. The effort and often 'invisible' activity undertaken to manage or maintain involvement in healthcare is identified. Communication impairment requires support and accommodation, otherwise healthcare involvement can be compromised. Results show participants may associate effective communication with good healthcare. What are the potential or actual clinical implications of the work?: Clinicians may wish to use these insights from plwMND and their carers to guide adjustments to their professional practice to maximize healthcare involvement for their patients. Tailored education for different healthcare groups is needed to improve understanding of MND‐related communication impairments and supportive strategies so that involvement in healthcare is not compromised. [ABSTRACT FROM AUTHOR]

Background: The majority of children with cerebral palsy (CP) experience challenges in functional communication from a young age. A pivotal aspect of functional communication is language comprehension. A variety of classification systems and questionnaires are available to classify and describe functional communication skills in children with CP. A better understanding of the convergent validity of (subsections of) these tools, as well as their relationship with spoken language comprehension, will be valuable in both clinical practice and research. Aims: To investigate the convergent validity of (subsections of) functional communication tools and the relationship with spoken language comprehension in children with CP. Methods & Procedures: Cross‐sectional data on 138 children were subdivided into three developmental stages based on (Dutch) educational phases: ages 18 months–3;11y (n = 59), 4;0–5;11 years (n = 37) and 6;0–8;11 years (n = 42). The following functional communication tools were used to classify and describe functional communication: Communication Function Classification System (CFCS), subscales of the Caregivers Priorities and Child Health Index of Life with Disabilities—Dutch Version (CPCHILD‐DV) and the Focus on Communication Under Six‐34 (FOCUS‐34) questionnaire. Spoken language comprehension was assessed with the Computer‐Based instrument for Low motor Language Testing (C‐BiLLT). Correlations between the functional communication tools, and with the C‐BiLLT, were calculated using Pearson's and Spearman's correlation coefficients. It was hypothesized a priori that correlations of at least 0.60 suggest good convergent validity. Outcomes & Results: At all developmental stages, a significant ordered decreasing tendency of communication outcomes was found across CFCS levels; lower CFCS levels were associated with lower scores on the CPCHILD‐DV and FOCUS‐34, and with a lower level of spoken language comprehension (C‐BiLLT). Correlation coefficients of the functional communication tools exceeded 0.60 at all developmental stages. Correlations between C‐BiLLT raw scores and the functional communication tools varied between 0.351 and 0.591 at developmental stage 18 months–3;11 years, between 0.781 and 0.897 at developmental stage 4;0–5;11 years, and between 0.635 and 0.659 at developmental stage 6;0–8;11 years. Conclusions & Implications: The functional communication tools assessed in this study showed convergent validity at all developmental stages. The CFCS, currently most widely used in paediatric rehabilitation, is adequate in the classification of functional communication. However, for more detailed clinical goal setting and evaluation of change in functional communication, the additional use of FOCUS‐34 or CPCHILD‐DV is recommended. What this paper adds: What is already known on the subject: A range of functional communication tools are available that help describe and classify functional communication in children with CP. These include the CFCS, subsections of CPCHILD‐DV and FOCUS‐34. The CFCS classifies functional communication in daily life with familiar and unfamiliar partners. Specific subsections of the CPCHILD‐DV and FOCUS‐34 include items that pertain to communicative participation. The innovative C‐BiLLT provides a standardized method to assess spoken language comprehension in children with CP and significant motor impairments. What this paper adds to existing knowledge: In the present study, convergent validity was confirmed between CFCS and specific subsections of the CPCHILD‐DV and FOCUS‐34. Correlations between these functional communication tools and the C‐BiLLT were moderate to strong. What are the potential or actual clinical implications of this work?: For clinical and research purposes (for instance, accurate prescription of augmentative and alternative communication—AAC), healthcare and educational professionals together with parents need to know how functional communication tools converge and how functional communication levels relate to the comprehension of spoken language. The CFCS provides a valid classification of functional communication abilities in children with CP. However, to measure change in functional communication and to evaluate treatment outcomes, use of additional functional communication tools such as the CPCHILD‐DV and FOCUS‐34 is recommended. When discrepancies are found between communicative abilities and spoken language comprehension, it is strongly recommended that valid tools are used in a more detailed examination of the child's spoken language comprehension skills and functional communication. [ABSTRACT FROM AUTHOR]

Background: Despite accumulated evidence that language development depends on basic cognitive processes, the balance in contributions of verbal and non‐verbal cognitive skills to language abilities is still underexplored. Little is known about which cognitive measures best predict the degree of severity in children with language disorder (LD). Aims: To examine the association between verbal and non‐verbal cognitive abilities with language abilities in typically developing and language impaired 8‐year‐old children, as well as which cognitive abilities are most effective in distinguishing LD severity levels. Methods & Procedures: Children (N = 509) from the Language‐8 Study, which oversampled probable cases of children with LD from a population‐based cohort in Norway, were assessed at 8 years. Language skills were assessed using the Norwegian Clinical Evaluation of Language Fundamentals—4 (CELF‐4). Children's verbal and non‐verbal cognitive abilities were assessed via standardized cognitive measures. An exploratory factor analysis (EFA) was first conducted to uncover the underlying factor structure of the cognitive variables. Using a hierarchical multiple regression analysis, we then examined to what extent the non‐verbal cognition factor explained language abilities above and beyond verbal cognition factors. Lastly, multinomial logistic regression was used to examine which cognitive measures best predicted the degree of severity in the children with LD. Outcomes & Results: The EFA resulted in three factors (Verbal Cognition, Processing Speed and Memory, and Non‐Verbal Cognition). The hierarchical multiple regression analysis revealed that all three cognitive factors contributed significantly to individual variation in language abilities. Non‐Verbal Cognition explained 5.4% variance in language abilities above and beyond that accounted for by Verbal Cognition and Processing Speed and Memory. Results from the multinomial logistic regression analysis indicated that cognitive subtests, including Familiar Sequences, WASI Vocabulary and WASI Similarities, not only distinguished LD from typically developing children, but were also efficient in distinguishing severity of LD symptoms. Conclusions & Implications: This study confirms concurrent links between language and non‐verbal cognitive skills above and beyond the contribution of verbal cognitive skills. The results provide further evidence that children with LD experience both language and cognitive problems in mid‐childhood. Our findings suggest implications for LD intervention and diagnosis. The findings support the importance of measuring both verbal and non‐verbal cognitive skills when making an LD diagnosis, and point to the potential of targeting underlying cognitive skills as one strategy to support language abilities. WHAT THIS PAPER ADDS: What is already known on the subject: Language development is dependent on basic cognitive processes. These include both verbal and non‐verbal cognitive abilities. Children with LD often experience both language and cognitive problems. There is evidence that performance on cognitive tests may be associated with the degree of severity of LD. What this paper adds to existing knowledge: The current results from a large population‐based cohort establish that a number of verbal and non‐verbal cognitive abilities are tightly linked to variation in language abilities and the degree of severity of LD. Our study confirms concurrent links between language and non‐verbal cognitive abilities above and beyond the contribution of verbal cognitive abilities. We also identify specific verbal and non‐verbal cognitive tests that distinguish between typical children and children with LD, as well as LD severity. What are the potential or actual clinical implications of this work?: Our findings support the importance of measuring both verbal and non‐verbal cognitive skills when making an LD diagnosis. Our findings also point to the potential of targeting underlying cognitive skills as one strategy to support language abilities. We suggest that future intervention studies focus on the impact of non‐verbal cognitive skills on language development in children with LD. [ABSTRACT FROM AUTHOR]

Introduction: Current strategies to address shortages of rural doctors focus on developing a pipeline for rural generalist practice. Limited research has explored how doctors' professional journey engenders the skills required to practice rurally. Objective: This paper analyses how rural general practitioners' clinical pathway informs their scope of practice and future retention. Design: Qualitative thematic analysis using semi‐structured telephone interviews. Twenty‐one general practitioners appointed in their local health district of Murrumbidgee and Southern New South Wales, Australia, within the past 10 years. Participants comprised 10 Australian medical graduates (AMG) and 11 international medical graduates (IMG). Findings: AMGs and IMGs contrasted how their pathway into rural practice, and capacity to work rurally, informed their scope of practice. Australian medical graduates' familiarity with rural areas was consolidated through congruous experiences, including at rural clinical schools. Paradoxically, the fluency of their training limited the amount of unsupervised experience and confidence AMGs gained. Together with a focus on work‐life balance, this limited many to providing mainstream general practice, precluding extending their scope of practice. International medical graduates described disseminated experiences, often unsupervised in high‐volume contexts. However, a lack of professional opportunities prevented them from extending their scope of practice. Discussion: IMG and AMG motivation and pathway for working rurally differ. Respective cohorts have concerns regarding requisite skills and knowledge for rural practice, which incorporates opportunity and recognition. Entry points for training should be variable to allow consideration of life stage, prior skill development and extension of scope of practice. Conclusion: Doctors' scope of practice is informed by their pathways into rural practice. Australian medical graduates may not gain adequate competence during expedited training programs to confidently undertake extended clinical activities. International medical graduates, however lacked the opportunities and support, to utilise their expertise in rural practice. Complementarily utilising the expertise and commitment of both AMGs and IMGs may synergistically address workforce shortages. [ABSTRACT FROM AUTHOR]

Various models of specialized foster care have been developed, but research on them is limited. This longitudinal, exploratory study analysed data on adaptive functioning, emotional and social problems and self‐concept in a specialized foster care service in Sweden. The focus of the study was on the development of the children and young people in placement. The Adaptive Behaviour Assessment System (ABAS‐II) was used to measure adaptive functioning, and the Beck Youth Inventories of Emotional and Social Impairment (BYI) was used to measure self‐rated emotional and social problems and self‐concept. Self‐ratings showed significant improvements in disruptive behaviour, anger, anxiety and depression. Adaptive functioning as rated by foster parents improved but not enough to catch up with the non‐clinical norm group. The average adaptive functioning among the participants at baseline was considerably below the Swedish norm group. Similar to the results of a previous study of the same treatment model, children and young people rated improvement while their foster parents did not do so to the same extent. Possible explanations for this are discussed in the paper. The study is limited by the lack of a control group and by data attrition. [ABSTRACT FROM AUTHOR]

Background: The subcutaneous implantable‐defibrillator (S‐ICD) is a relatively new alternative to the transvenous ICD system to minimize intravascular lead‐related complications. This paper presents outcome of SICD implantation in patients enrolled in Iran S‐ICD registry. Methods: Between October 2015 and June 2022, this prospective multicenter national registry included 223 patients with a standard indication for an ICD, who neither required bradycardia pacing nor needed cardiac resynchronization to evaluate the early post‐implant complications and long‐term follow‐up results of the S‐ICD system. Results: The mean age of the patients was 45 ± 17 years. The majority (79.4%) were male. Ischemic cardiomyopathy (39.5%) was the most common underlying disorder among patients selected for S‐ICD implant. Most study patients (68.6%) had ICD for primary prevention of sudden cardiac death. Seven patients (3.1%) were found to have suboptimal lead positions. Six patients (2.7%) developed a pocket hematoma; all were managed medically. During a mean follow‐up of 2 years, the appropriate therapy was recorded in 13% of the patients and inappropriate ICD intervention mainly due to supraventricular tachycardia in 8.9%. Pocket infection was observed in four patients (1.8%) and five patients (2.2%) died mainly due to heart failure. Conclusion: S‐ICDs were effective at detecting and treating both induced and spontaneous ventricular arrhythmias. Major clinical complications were rare. [ABSTRACT FROM AUTHOR]

Objective: To determine the effects on weight loss of three abbreviated behavioral weight loss interventions with and without coaching and mobile technology.Methods: A randomized controlled efficacy study of three 6-month weight loss treatments was conducted in 96 adults with obesity: 1) self-guided (SELF), 2) standard (STND), or 3) technology-supported (TECH). STND and TECH received eight in-person group treatment sessions. SELF and STND used paper diaries to self-monitor diet, activity, and weight; TECH used a smartphone application with social networking features and wireless accelerometer.Results: Weight loss was greater for TECH and STND than SELF at 6 months (-5.7 kg [95% confidence interval: -7.2 to -4.1] vs. -2.7 kg [95% confidence interval: -5.1 to -0.3], P < 0.05) but not 12 months. TECH and STND did not differ except that more STND (59%) than TECH (34%) achieved ≥ 5% weight loss at 6 months (P < 0.05). Self-monitoring adherence was greater in TECH than STND (P < 0.001), greater in both interventions than SELF (P < 0.001), and covaried with weight loss (r(84) = 0.36-0.51, P < 0.001).Conclusions: Abbreviated behavioral counseling can produce clinically meaningful weight loss regardless of whether self-monitoring is performed on paper or smartphone, but long-term superiority over standard of care self-guided treatment is challenging to maintain. [ABSTRACT FROM AUTHOR]

Self‐care performed by patients and the caregiver contribution to this self‐care are essential for improving cardiovascular outcomes; however, so far, no studies have sufficiently investigated this field in Italy. This paper describes a research protocol of a multi‐center longitudinal study designed to investigate the self‐care of patients affected by coronary heart disease (CHD), the caregiver's contribution to this self‐care, the predictors of patient and caregiver self‐care, the mediating role of self‐efficacy, and the self‐care outcomes. Data collection will be performed across seven Italian inpatient settings at baseline and 3 and 6 months from enrollment. Multilevel modeling and actor partner interdependence models will be implemented on a sample of 330 patient–caregiver dyads to adjust for the interdependence of measurements. The study received approval from an ethics committee in Italy and was financed in January 2021 by a grant from the Solidal Foundation in Alessandria. This research will advance the knowledge about the self‐care process in CHD. The results will guide research and clinical practice by identifying variables sensitive to educational interventions. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID‐19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. Results: No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. Conclusions: Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support. [ABSTRACT FROM AUTHOR]

Purpose To examine the nature of the interruptions during medication work. Design An exploratory descriptive design was used with 28 nurses during 15 medication rounds in the medical, surgical, and gynecology wards at a 1000‐bed tertiary teaching hospital in Saudi Arabia. Methods: Non‐participant prospective observational and follow‐up interview methods were used to collect data. A standard paper‐based tool and digital stopwatch to count the interruptions were used. Nurses' sources, the secondary tasks undertaken, and the impacts of the interruptions were considered. The data were analyzed via descriptive analysis. Results: A total of 87 medication‐related events occurred. In these, 182 interruptions accounted for 90.0% of the total. Interruptions were more frequent during medication administration and often occurred in the corridors and patients' rooms. Nurses, medical officers, and impediments were frequent sources of interruptions. The secondary tasks attended by the nurses were mostly related with impediment resolutions and patients' needs. System failures appeared to be associated with clinical and procedural errors. Conclusion: The results of this study provide information regarding the course of interruptions during medication work in a Saudi Arabian hospital. Nurses were the main source of interruptions related with the provision of patient care and resolution of impediments. Interruptions tended to be associated with clinical errors and procedural failures due to system failure. Promoting a culture of respect and workplace etiquette in global healthcare settings demands minimizing non‐life‐threatening interruptions during nursing works. Clinical relevance: Strategies used in hospital management systems that affect nursing, pharmacies, human resources, and ancillary service department collaborations should be monitored for effectiveness and to ensure patient safety. Various approaches toward medication management systems, such as the utilization of an Omnicell automatic dispensing machine and cabinets within each patient's room, as well as others, such as wearing a "no‐interruption zone" sign, could be tailored and matched to the context of the practice to reduce interruptions. [ABSTRACT FROM AUTHOR]

This paper explores the ways in which practitioners in children and family social work teams make sense of information in their work. By examining observations and recordings from an ethnographic study, the paper focuses on how informal discussions within the office space inform and affect social workers' analysis (or sense-making). Three elements of sense-making activity are illustrated with vignettes and extracts from field notes: methodical doubt, proximity/reflexivity and security. These three distinct features of practice are then discussed and the significance of the findings considered in relation to contemporary practice. The paper highlights the importance of informal interaction and discussion in the social work office as part of the process of social workers' sense-making. It indicates that feelings of trust and security may be linked to intellectual curiosity and an ability to work with uncertainty in sense-making. Ethnography can provide a means of illuminating this complex and inaccessible element of practice and the findings add to the body of knowledge. Practitioners and organisations may wish to reflect on the findings and consider how they contribute to, and are affected by, such cultures and practices. Copyright © 2017 John Wiley & Sons, Ltd. Key Practitioner Messages Curiosity and methodical doubt are central elements in effective social work sense-making., Social workers can use informal discussions effectively to support open-minded and rigorous sense-making., Choice and proximity of colleagues can promote shared sense-making., The nature of office spaces may influence the sense of self-security that underpins effective sense-making. [ABSTRACT FROM AUTHOR]

Background: This paper is a follow‐up study continuing the COVISTRESS network previous research regarding health‐related determinants. Objective: The aim was to identify the main consequences of COVID‐19 lockdown on Body MassIndex and Perceived Fragility, related to Physical Activity (PA), for different categories of populations, worldwide. Design: The study design included an online survey, during the first wave of COVID‐19 lockdown, across different world regions. Setting and participants: The research was carried out on 10 121 participants from 67 countries. The recruitment of participants was achieved using snowball sampling techniques via social networks, with no exclusion criteria other than social media access. Main outcome measures: Body MassIndex, Physical Activity, Perceived Fragility and risk of getting infected items were analysed. SPSS software, v20, was used. Significance was set at P <.05. Results: Body MassIndex significantly increased during lockdown. For youth and young adults (18‐35 years), PA decreased by 31.25%, for adults (36‐65 years) by 26.05% and for the elderly (over 65 years) by 30.27%. There was a high level of Perceived Fragility and risk of getting infected for female participants and the elderly. Correlations between BMI, Perceived Fragility and PA were identified. Discussion and Conclusions: The research results extend and confirm evidence that the elderly are more likely to be at risk, by experiencing weight gain, physical inactivity and enhanced Perceived Fragility. As a consequence, populations need to counteract the constraints imposed by the lockdown by being physically active. [ABSTRACT FROM AUTHOR]

The many adverse effects of child maltreatment make the scientific investigation of this phenomenon a matter of vital importance. Although the relationship between maltreatment and problematic emotion reactivity and regulation has been studied, the strength and specificity of these associations are not yet clear. We examine the magnitude of the maltreatment-child-emotion reactivity/regulation link. Studies with substantiated maltreatment involving children aged up to 18 were included, along with a smaller number of longitudinal studies (58 papers reviewed, encompassing more than 11,900 children). In comparison to nonmaltreated children, maltreated children experience more negative emotions, behave in a manner indicative of more negative emotion, and display emotion dysregulation. We outline several theoretical implications of our results. [ABSTRACT FROM AUTHOR]

Aim: To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50 years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype.Method: This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016.Results: At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication.Interpretation: Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50 years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown. [ABSTRACT FROM AUTHOR]

Aim: To evaluate an innovative paediatric neurorehabilitation model in relation to improving quality of neurorehabilitation and reducing length of stay (LOS) for children with acquired brain injury.Method: A process evaluation approach was conducted in line with Medical Research Council evaluation of complex interventions guidance. Analysis was conducted on routinely collected patient data from 2017 to 2018, including LOS and family feedback. Descriptive and inferential statistics were used for quantitative analysis and qualitative data was analysed thematically.Results: Outcomes for 70 children (0-16y, median age 5y, IQR 1-11y, 46 males, 24 females) referred to the service indicated improved function and reduced complexity of need. The mean LOS was 10.6 days compared to baseline mean LOS of 41 days (2011-2012). High satisfaction from the families was recorded; however, ongoing needs and service gaps regarding long-term support were identified.Interpretation: This service model is effective in delivering quality paediatric neurorehabilitation, demonstrating a sustained impact on LOS, and positive patient outcome data and family feedback for this group of patients. What this paper adds Investment in early intensive neurorehabilitation and supported discharge impacts length of stay (LOS) for children with acquired brain injury. Early intensive neurorehabilitation and supported discharge is effective. This is demonstrated by a sustained reduction in LOS, positive patient outcomes, and family feedback. [ABSTRACT FROM AUTHOR]

Violent ideations are increasingly recognized as an important psychological predictor for aggressive and violent behavior. However, little is known about the processes that contribute to violent ideations. This paper examines the extent to which polyvictimization triggers violent ideations in late adolescence and early adulthood, while also adjusting for dispositional and situational factors as well as prior violent ideations. Data came from three waves of the Zurich Project on the Social Development from Childhood into Adulthood (z-proso; n = 1465). Full-information maximum likelihood Tobit models were fitted to regress violent ideations experienced at ages 17 and 20 on multiple victimization experiences in the preceding 12 months while controlling for antecedent developmental risk factors and prior violent ideations. The results showed that violent ideations in late adolescence and early adulthood are influenced by violent thoughts, aggressive behavior, violent media consumption, moral neutralization of violence, and internalizing symptoms measured 2 years earlier. Experiences of polyvictimization significantly contributed to an increase in violent ideations both during late adolescence and in early adulthood. The exposure-response relationship between victimization and violent ideations did not significantly differ by sex. The findings are consistent with the notion that violent ideations are triggered by a retaliation-linked psychological mechanism that entails playing out other directed imaginary aggressive scenarios specifically in response to experiencing intentional harm-doing by others. [ABSTRACT FROM AUTHOR]

Aims: Patients surviving an acute myocardial infarction (AMI) are at risk of developing symptomatic heart failure (HF) or premature death. We hypothesized that sacubitril/valsartan, effective in the treatment of chronic HF, prevents development of HF and reduces cardiovascular death following high-risk AMI compared to a proven angiotensin-converting enzyme (ACE) inhibitor. This paper describes the study design and baseline characteristics of patients enrolled in the Prospective ARNI vs. ACE inhibitor trial to DetermIne Superiority in reducing heart failure Events after Myocardial Infarction (PARADISE-MI) trial.Methods and Results: PARADISE-MI, a multinational (41 countries), double-blind, active-controlled trial, randomized patients within 0.5-7 days of presentation with index AMI to sacubitril/valsartan or ramipril. Transient pulmonary congestion and/or left ventricular ejection fraction (LVEF) ≤40% and at least one additional factor augmenting risk of HF or death (age ≥70 years, estimated glomerular filtration rate <60 mL/min/1.73 m2 , diabetes, prior myocardial infarction, atrial fibrillation, LVEF <30%, Killip class ≥III, ST-elevation myocardial infarction without reperfusion) were required for inclusion. PARADISE-MI was event-driven targeting 708 primary endpoints (cardiovascular death, HF hospitalization or outpatient development of HF). Randomization of 5669 patients occurred 4.3 ± 1.8 days from presentation with index AMI. The mean age was 64 ± 12 years, 24% were women. The majority (76%) qualified with ST-segment elevation myocardial infarction; acute percutaneous coronary intervention was performed in 88% and thrombolysis in 6%. LVEF was 37 ± 9% and 58% were in Killip class ≥II.Conclusions: Baseline therapies in PARADISE-MI reflect advances in contemporary evidence-based care. With enrollment complete PARADISE-MI is poised to determine whether sacubitril/valsartan is more effective than a proven ACE inhibitor in preventing development of HF and cardiovascular death following AMI. [ABSTRACT FROM AUTHOR]

Background: Cardiotoxicity is a well‐known side effect after anthracyclines and chest radiotherapy in childhood cancer survivors (CCS). The DCCSS LATER 2 CARD (cardiology) study includes evaluation of echocardiographic measurements for early identification of CCS at highest risk of developing heart failure. This paper describes the design, feasibility, and reproducibility of the echocardiography protocol. Methods: Echocardiograms from CCS and sibling controls were prospectively obtained at the participating centers and centrally analyzed. We describe the image acquisition, measurement protocol, and software‐specific considerations for myocardial strain analyses. We report the feasibility of the primary outcomes of systolic and diastolic function, as well as reproducibility analyses in 30 subjects. Results: We obtained 1,679 echocardiograms. Biplane ejection fraction (LVEF) measurement was feasible in 91% and 96% of CCS and siblings, respectively, global longitudinal strain (GLS) in 80% and 91%, global circumferential strain (GCS) in 86% and 89%, and ≥2 diastolic function parameters in 99% and 100%, right ventricle free wall strain (RVFWS) in 57% and 65%, and left atrial reservoir strain (LASr) in 72% and 79%. Intra‐class correlation coefficients for inter‐observer variability were 0.85 for LVEF, 0.76 for GLS, 0.70 for GCS, 0.89 for RVFWS and 0.89 for LASr. Intra‐class correlation coefficients for intra‐observer variability were 0.87 for LVEF, 0.82 for GLS, 0.82 for GCS, 0.85 for RVFWS and 0.79 for LASr. Conclusion: The DCCSS LATER 2 CARD study includes a protocolized echocardiogram, with feasible and reproducible primary outcome measurements. This ensures high‐quality outcome data for prevalence estimates and for reliable comparison of cardiac function parameters. [ABSTRACT FROM AUTHOR]

Aim: To develop a prediction model to estimate the chances of live birth over multiple cycles of in vitro fertilization (IVF) and intracytoplasmic sperm injection (ICSI) treatment. Methods: A retrospective cohort study was launched in three reproductive centers including 10 824 couples who received 14 106 treatment cycles with known pregnancy outcomes by the end of 2016. Discrete time logistic regression was used to establish the model and a nomogram was developed to predict the chance of live birth on plain paper‐based final predictors. Results: Among 10 824 couples, 5809 (53.7%) ended up with a live birth with several successive transplant cycles. What's more, we found that younger female age (p < 0.001), smaller cycle number (p < 0.001), female body mass index (p < 0.001), male factor (p < 0.001), ovulation disorder (p = 0.006), and higher endometrial thickness (p < 0.001) were significantly associated with increased live birth rate. Discrimination of the model expressed by area under the curve (AUC) was 0.66. Conclusion: Our study will help shape couples' expectations of their ART outcome, allowing them to plan their treatments more efficiently and prepare emotionally and financially. [ABSTRACT FROM AUTHOR]

This paper estimates the impact of spousal bereavement on hospital inpatient use for the surviving bereaved by following the experience of 94,272 married Scottish individuals from 1991 until 2009 using a difference-in-difference model. We also consider the sample selection issues related to differences in survival between the bereaved and non-bereaved using a simple Cox Proportional-Hazard model. Before conducting these estimations, propensity score approaches are used to re-weight the non-bereaved to generate a more random-like comparison sample for the bereaved. We find that those bereaved who survive are both more likely to be admitted and to stay longer in hospital than a comparable non-bereaved cohort. Bereavement is estimated to induce on average an extra 0.24 (95% CI [0.15, 0.33]) hospital inpatient days per year. Similar to previous studies, we estimate the bereaved have a 19.2% (95% CI [12.5%, 26.3%]) higher mortality rate than the comparable non-bereaved cohort. [ABSTRACT FROM AUTHOR]

This paper examines the effects of parental health on cognitive and noncognitive development in Australian children. The underlying nationally representative panel data and a child fixed effects estimator are used to deal with unobserved heterogeneity. We find that only father's serious mental illness worsens selected cognitive and noncognitive skills of children. Maternal poor health also deteriorates some cognitive and noncognitive outcomes of children of lone mothers only. Our results demonstrate that either failing to account for parent-child fixed effects or using child noncognitive skills reported by parents could overestimate the harmful impact of poor parental health on child development. [ABSTRACT FROM AUTHOR]

Aim: To investigate the utility of the Insight Inventory (a structured clinical inventory completed by caregivers) for assessment of children with cerebral visual impairment; and to investigate effectiveness of tailored habilitational strategies derived from the responses to the Insight Inventory.Method: Fifty-one eligible children (26 males, 25 females; mean age 9y 5mo, SD 3y, range 5-16y) were recruited from Great Ormond Street Hospital, London. They underwent baseline assessment including neuro-ophthalmological and neuropsychological evaluations, and parent- and child-reported ratings on a questionnaire-based measure of quality of life. Parents also completed the Insight Inventory. On the basis of responses to the Inventory, families received individualized habilitational strategies. Follow-up assessments 6 months later included repeating the Insight Inventory and quality of life questionnaires.Results: Correlations were found between the Insight Inventory and the Wechsler Intelligence Scale for Children, Fourth Edition, the Beery-Buktenica Test of Visual-Motor Integration, and the Benton Facial Recognition Test, suggesting that the Insight Inventory is an effective tool to estimate visual-perceptual difficulties. At 6 months follow-up, caregiver reports indicated significant improvements in the quality of life of children below the age of 12 years.Interpretation: The Insight Inventory is a simple questionnaire which covers practical aspects of cognitive visual function in everyday life. It provides in-depth information about the aspects that children struggle with. It can also guide programmes of individualized habilitation strategies, which may enhance the quality of life of younger children.What This Paper Adds: Questionnaire scores demonstrate biologically plausible correlations with formal neuropsychological tests of visual function. After administration of matched practical habilitational strategies, younger children showed improvement in quality of life and functional vision scores. [ABSTRACT FROM AUTHOR]

Aim: To evaluate the properties of the Infant Motor Activity Log (IMAL), a caregiver-report for frequency and quality of use of more affected upper extremity in infants with neurological and functional impairments.Method: This was a prospective cohort study of 66 children (34 females, 32 males) aged 6 to 24 months (mean age [SD] 13.7mo [5.3]) with neurological and functional impairments and a confirmed cerebral palsy diagnoses after 2 years, and 51 age-matched typically developing children. The IMAL was administered at baseline and 4 weeks later. Typically developing infants were tested with randomly assigned 'more affected' upper extremity. Psychometric properties were evaluated using Spearman's correlation coefficient, Cronbach's alpha, and Jonckheere-Terpstra tests.Results: In the children with impairments, the IMAL showed internal consistency (alpha≥0.88) for the How Well Scale (HWS) and How Often Scale (HOS). Test-retest reliability was 0.64 (HOS) and 0.70 (HWS), demonstrating stability over time. Correlation with Bayley Scales of Infant and Toddler Development, Third Edition more affected arm raw scores were 0.70 (HOS) and 0.72 (HWS) (p<0.001) demonstrating construct validity. Both scale scores decreased with increasing Gross Motor Function Classification System and Mini-Manual Ability Classification System (p<0.001) levels, supporting discriminative validity. Discrimination between typically developing infants and infants with impairments was high (HWS: area under the receiver operating characteristic curve [AUC] 0.96, 95% confidence interval [CI] 0.94-0.99 and HOS AUC=0.95, CI 0.92-0.99).Interpretation: The IMAL is a valid and reliable discriminative caregiver measure of upper limb performance and may complement measures of capacity in infants with neurological and functional impairments.What This Paper Adds: The Infant Motor Activity Log (IMAL) is a valid and reliable measure of caregiver perception of upper limb function. The IMAL fills a measurement gap for infant motor performance in children with impairments. The IMAL discriminates among motor function levels. [ABSTRACT FROM AUTHOR]

Aim: To describe the trajectory of clinical signs in children who developed human immunodeficiency virus encephalopathy (HIVE) after starting early antiretroviral therapy (ART).Method: This was a retrospective case-cohort description of HIVE among Cape Town participants from the Children with HIV Early AntiRetroviral treatment (CHER) trial. Criteria for HIVE diagnosis were at least two of: (1) acquired central motor deficit, (2) impaired brain growth, and (3) failure to attain or loss of developmental milestones in the absence of an alternative aetiology.Results: Of 133 surviving participants who initiated ART at a median age of 9 weeks and who were followed until a median age of 6 years, 20 (12%) developed HIVE at a median age 31 months (interquartile range 19-37). In these, the first neurological deterioration was noticed at a median age of 19 months, when 16 were on ART and nine had undetectable HIV viral load for a median of 12 months. Signs of upper motor neurons were present in 18, of whom 12 resolved and four had persistent spastic diplegia; 19 had motor delay, of whom 14 resolved; 12 had language delay, of whom 11 resolved; and 16 had impaired brain growth, of whom only five recovered. For the 16 participants already on ART at HIVE diagnosis, regimens were not altered in response to diagnosis.Interpretation: HIVE may occur despite early ART initiation and virological suppression and then resolve on unchanged ART, most likely as intrathecal inflammation subsides.What This Paper Adds: Despite suppressive antiretroviral therapy, children can develop human immunodeficiency virus encephalopathy, The most common manifestations are motor deficits and impaired brain growth. Most experience improvement, with many resolving without additional intervention. [ABSTRACT FROM AUTHOR]

Aim: To analyse the development of motor skill and executive function in school-aged children with and without developmental coordination disorder (DCD).Method: Using a longitudinal design, 186 children (86 males, 100 females) aged 6 to 11 years at Time 1 were tested over a 2-year period, 52 of whom were diagnosed with DCD at Time 1 (27 males, 25 females; mean age 8y 5mo, SD 1y 6mo) using DSM-5 criteria. The McCarron Assessment of Neuromuscular Development assessed motor status at Time 1 and at 2-year follow-up (Time 2). Executive function was assessed using a well-validated measure, the Groton Maze Learning Test.Results: The DCD cohort at Time 1 had moderate incidence of executive function deficit (41%). Most importantly, at a group level, children with persisting DCD (across Times 1 and 2) also showed significantly lower levels of executive function than children with typical motor development at both time points. At an individual level, around 26% of children in this group had persisting executive function deficits relative to normal ranges of performance.Interpretation: Children with persisting DCD are at significant risk of executive function issues. The combination of motor and cognitive issues as a potential risk factor in the longer-term development of children is discussed.What This Paper Adds: Around half of children initially diagnosed with developmental coordination disorder (DCD) had the same diagnosis at 2-year follow-up. 41% of children with DCD have impaired executive function. Children with persisting DCD show poorer executive function than those with typical motor development or remitting DCD. [ABSTRACT FROM AUTHOR]

Aim: To examine the efficacy of Hand-Arm Bimanual Intensive Therapy (HABIT) on daily functioning, unimanual dexterity, and bimanual performance of children with bilateral cerebral palsy (CP) compared with customary care.Method: Forty-one children with bilateral CP, aged 4 to 16 years, classified in levels I to III of the Manual Ability Classification System, were randomly assigned to HABIT (90h) (n=21) or to customary care (4.5h) (n=20). Participants' daily functioning (Pediatric Evaluation of Disability Inventory [PEDI], Canadian Occupational Performance Measure [COPM]), unimanual dexterity (Jebsen-Taylor Test of Hand Function, Box and Blocks Test [BBT]), and bimanual performance (Both Hands Assessment) were assessed pre-, post-, and 6 months after the intervention. Linear mixed-effects models were used for inferential analysis.Results: Children participating in HABIT showed greater improvements in daily functioning (COPMperformance : χ12 =9.50, p<0.01; COPMsatisfaction : χ12 =5.07, p<0.05; PEDIfunctional skills : χ12 =6.81, p<0.01; PEDIcaregiver assistance : χ12 =6.23, p<0.05) and in the dexterity of the dominant hand (BBT: χ12 =3.99, p<0.05) compared with children maintaining customary care. Group or time effects did not explain any variance in bimanual performance or in the dexterity of the non-dominant hand.Interpretation: HABIT may be beneficial for children with bilateral CP, with benefits evidenced for daily functioning outcomes.What This Paper Adds: Hand-Arm Bimanual Intensive Therapy (HABIT) improved daily functioning of children with bilateral cerebral palsy (CP). Bimanual performance, measured by the Both Hands Assessment, did not change after HABIT in children with bilateral CP. Children with asymmetric and symmetric hand use exhibited similar improvements after HABIT. [ABSTRACT FROM AUTHOR]

The ECG Belt for CRT response trial is designed to test the hypothesis that in patients traditionally less likely to respond to cardiac resynchronization therapy (CRT), an individualized approach utilizing the electrocardiogram (ECG) Belt to guide lead placement, vector selection, and device programming is superior to current standard of care. The ECG Belt is a noninvasive mapping technology designed to measure beat by beat electrical activation of the left ventricle by utilizing unipolar measurements from multiple ECG electrodes on the body surface. The ECG Belt for CRT response trial is a multicenter, prospective, randomized, investigational pre‐market research study conducted at 48 centers in the United States, Canada, and Europe and will randomize approximately 400 subjects. The trial has three arms (enrollment will be 2:1:1, respectively): utilization of the Belt to guide implant as well as postimplant programming, utilizing the Belt to guide postimplant programming alone, and a non‐Belt control arm. AdaptivCRT will be an option in the treatment arm but not the control arms. The primary endpoint is change in left ventricular end‐systolic volume between preimplant and at 6 months. This paper describes the design and analytic plan for the trial. [ABSTRACT FROM AUTHOR]

Aim: To describe the cognitive development of children with neurofibromatosis type 1 (NF1) and plexiform neurofibromas, and identify predictors of cognitive development.Method: Participants included 88 children with NF1 and plexiform neurofibromas (50 males, 38 females, aged 6-18y, mean=12y, SD=3y 7mo) on a natural history study at the National Cancer Institute. Neuropsychological assessments (e.g. IQ, academic achievement, attention, and executive functioning) were administered three times over 6 years.Results: Relative to normative peers, the total sample of children with NF1 and plexiform neurofibromas demonstrated significantly lower scores in most cognitive domains and decreasing z-scores over time in math, writing, inhibitory control, and working memory. Children who had parents with (vs without) NF1 were more likely to experience decreased z-scores in performance IQ, reading, writing, attention, and working memory. Higher (vs lower) parental education was related to higher levels of IQ, math, reading, and cognitive flexibility and a slower decrease in math z-scores. Children's sex and the number of NF1 disease-related complications were not related to most cognitive outcomes.Interpretation: Children with NF1 and plexiform neurofibromas are at high risk for cognitive difficulties and declining z-scores in various domains of cognitive functioning over time. The findings highlight the need for a better understanding of the within-group differences in these children and their need for individualized educational plans.What This Paper Adds: Math, writing, inhibitory control, and working memory scores decreased over time. The proportion of children with clinically significant cognitive deficits increased over time. Parental neurofibromatosis type 1 and low education were related to greater cognitive difficulties in children. [ABSTRACT FROM AUTHOR]

Aim: To examine self- and proxy-reported symptoms of depression in children with epilepsy.Method: This was a prospective longitudinal cohort study of children with epilepsy. Participants were treated at six Canadian tertiary-care centers and followed over 28 months with repeated assessments of child self-reported symptoms of depression using the Children's Depression Inventory Short-Form (CDI-S). Trajectories of symptoms of depression were estimated using linear mixed effects (LME) modeling.Results: At baseline, 477 children had complete data (mean age [SD] 11y 5mo [2y 1mo], range 7y 7mo-15y 1mo; 234 females, 243 males). Mean CDI-S T score at baseline was 45.7 (SD=7.5) and at 28 months was 44.9 (SD=8.2), both were within the 'average' range. Results from LME modeling revealed mean raw CDI-S score of 1.897, corrected for age 10 years (corresponding to T scores slightly below the normed mean of 50), with no significant change over three measurements (slope=-0.113, p=0.135), indicating that CDI-S scores were stable over 28 months. Children with high initial CDI-S scores had lower subsequent scores, as demonstrated by the correlation of -0.827 between intercept and slope (p<0.001). Parents reported comparable findings.Interpretation: Self- and proxy-reported symptoms of depression were generally low and stable over an extended follow-up period. Normalization of scores was seen upon repeated assessment, even in children with higher scores of symptoms of depression at one point. These findings speak to the value and importance of repeated assessment over time.What This Paper Adds: In children with epilepsy, self- and proxy-reported symptoms of depression were generally low and stable over 28 months. The trajectory of symptoms of depression was not associated with seizure severity, whether considering the frequency or type of seizures. Parents' reports of symptoms of depression were comparable to the children's self-evaluations. [ABSTRACT FROM AUTHOR]

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Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aim: To compare the rate of falls between adults with and without cerebral palsy (CP).Method: We used primary care data on 1705 adults with CP and 5115 adults without CP matched for age, sex, and general practice attended. We compared odds of experiencing a fall between adults with and without CP using conditional logistic regression. We compared the rate of falls using a negative binomial model.Results: Participants were 3628 males (53%) and 3192 females (47%) (median age 29y, interquartile range 20-42y) at the start of follow-up. Follow-up was 14 617 person-years for adults with CP and 56 816 person-years for adults without CP. Of adults with CP, 15.3% experienced at least one fall compared to 5.7% of adults without CP. Adults with CP had 3.64 times (95% confidence interval [CI] 2.98-4.45) the odds of experiencing a fall compared to adults without CP. The rate of falls was 30.5 per 1000 person-years and 6.7 per 1000 person-years for adults with and without CP respectively (rate ratio 5.83, 95% CI 4.84-7.02) INTERPRETATION: Adults with CP are more likely to fall, and fall more often, than adults without CP. The causes and consequences of falls in adults with CP need examination.What This Paper Adds: Twenty adults with CP and 5.3 adults without CP experienced at least one fall per 1000 person-years. Adults with CP experienced 30.5 falls per 1000 person-years compared to 6.7 falls per 1000 person-years among adults without CP. Adults with CP had 3.64 times the odds of experiencing a fall compared to adults without CP. Adults with CP experienced 5.83 times more falls than adults without CP. [ABSTRACT FROM AUTHOR]

Aim: To compare language, speech, and voice of children born preterm and at term, and determine relevant predictors of outcome.Method: Three hundred infants (150 males, 150 females; 149 born at <30wks' gestation, 151 term-born) were prospectively recruited at birth from the Royal Women's Hospital. We administered the Preschool Language Scales, Fifth Edition, Diagnostic Evaluation of Articulation and Phonology, Grade Roughness Breathiness Asthenia Strain Scale, and Pediatric Voice Handicap Index at 3 years, and compared groups. We examined hypothesized predictors in children born preterm: gestational age at birth, birthweight, sex, chronic lung disease, high social risk, multilingualism, neurodevelopmental diagnosis, and oromotor feeding.Results: Children born preterm had poorer language than children born at term (coefficient -5.43). Speech and voice were similar between groups (coefficients -0.70 to 1.63). Chronic lung disease predicted voice (coefficient 6.05); male sex (coefficients 4.54-6.18), high social risk (coefficient -6.02 to -9.30), and neurodevelopmental diagnosis (coefficients -16.42 to -20.61) predicted language.Interpretation: Children born before 30 weeks' gestation had poorer language than children born at term. Children born preterm with neurodevelopmental disabilities or high social risk experience poorer language outcomes, and would benefit from enrichment of their language environment.What This Paper Adds: Speech and voice outcomes were similar between children born preterm and at term. Male sex, high social risk, and neurodevelopmental diagnosis predicted language outcomes. [ABSTRACT FROM AUTHOR]

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Data collected for a genome-wide association study of a primary phenotype are often used for additional genome-wide association analyses of secondary phenotypes. However, when the primary and secondary traits are dependent, naïve analyses of secondary phenotypes may induce spurious associations in non-randomly ascertained samples. Previously, retrospective likelihood-based methods have been proposed to correct for sampling biases arising in secondary trait association analyses. However, most methods have been introduced to handle studies featuring a case-control design based on a binary primary phenotype. As such, these methods are not directly applicable to more complicated study designs such as multiple-trait studies, where the sampling mechanism also depends on the secondary phenotype, or extreme-trait studies, where individuals with extreme primary phenotype values are selected. To accommodate these more complicated sampling mechanisms, only a few prospective likelihood approaches have been proposed. These approaches assume a normal distribution for the secondary phenotype (or the latent secondary phenotype) and a bivariate normal distribution for the primary-secondary phenotype dependence. In this paper, we propose a unified copula-based approach to appropriately detect genetic variant/secondary phenotype association in the presence of selected samples. Primary phenotype is either binary or continuous and the secondary phenotype is continuous although not necessary normal. We use both prospective and retrospective likelihoods to account for the sampling mechanism and use a copula model to allow for potentially different dependence structures between the primary and secondary phenotypes. We demonstrate the effectiveness of our approach through simulation studies and by analyzing data from the Avon Longitudinal Study of Parents and Children cohort. [ABSTRACT FROM AUTHOR]

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Aim: To characterize fatigue in children with hemiparesis with perinatal stroke and explore associations with measures of motor performance and corticospinal excitability.Method: Forty-five children (16 females, 29 males), aged 6 to 18 years (mean [SD] 12y [4]), with magnetic resonance imaging-confirmed perinatal stroke participated. Associations between fatigue (Pediatric Quality of Life Inventory Version 3.0 cerebral palsy module fatigue subscale), motor performance (Assisting Hand Assessment [AHA], Box and Blocks Test, grip strength), and excitability of corticospinal projections to both hands were examined using ranked tests of correlation, robust regression, and the Mann-Whitney U test.Results: Nearly half of the participants (n=21) reported experiencing fatigue in the previous month. Function in the less affected hand (Box and Blocks Test, grip strength) was correlated with fatigue scores. Participants with preserved ipsilateral projections to the more affected hand had less fatigue, and scores correlated with the excitability of these projections. Fatigue scores were not associated with age, sex, or AHA score.Interpretation: Fatigue is common in children with hemiparesis with perinatal stroke and is associated with motor performance and the presence and excitability of ipsilateral corticospinal projections from the contralesional hemisphere to the more affected hand.What This Paper Adds: Fatigue is common in children with hemiparesis with perinatal stroke. Fatigue was associated with motor performance and strength in the less affected, but not the more affected, hand. Fatigue was associated with the presence and excitability of ipsilateral corticospinal projections from the contralesional hemisphere. [ABSTRACT FROM AUTHOR]

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Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aim: This paper aimed to analyse the association between small for size at birth, stunting, recovery from stunting and pubertal development in a rural Bangladeshi cohort.Methods: The participants were 994 girls and 987 boys whose mothers participated in the Maternal and Infant Nutrition Interventions in Matlab trial. The birth cohort was followed from birth to puberty 2001-2017. Pubertal development according to Tanner was self-assessed. Age at menarche was determined and in boys, consecutive height measurements were used to ascertain whether pubertal growth spurt had started. The exposures and outcomes were modelled by Cox's proportional hazards analyses and logistic regression.Results: There was no difference in age at menarche between girls that were small or appropriate for gestational age at birth. Boys born small for gestational age entered their pubertal growth spurt later than those with appropriate weight. Children who were stunted had later pubertal development, age at menarche and onset of growth spurt than non-stunted children. Children who recovered from infant or early childhood stunting had similar pubertal development as non-stunted children.Conclusion: Infant and childhood stunting was associated with a later pubertal development. Recovery from stunting was not associated with earlier puberty in comparison with non-stunted children. [ABSTRACT FROM AUTHOR]

In many applications of linear mixed-effects models to longitudinal and multilevel data especially from medical studies, it is of interest to test for the need of random effects in the model. It is known that classical tests such as the likelihood ratio, Wald, and score tests are not suitable for testing random effects because they suffer from testing on the boundary of the parameter space. Instead, permutation and bootstrap tests as well as Bayesian tests, which do not rely on the asymptotic distributions, avoid issues with the boundary of the parameter space. In this paper, we first develop a permutation test based on the likelihood ratio test statistic, which can be easily used for testing multiple random effects and any subset of them in linear mixed-effects models. The proposed permutation test would be an extension to two existing permutation tests. We then aim to compare permutation tests and Bayesian tests for random effects to find out which test is more powerful under which situation. Nothing is known about this in the literature, although this is an important practical problem due to the usefulness of both methods in tackling the challenges with testing random effects. For this, we consider a Bayesian test developed using Bayes factors, where we also propose a new alternative computation for this Bayesian test to avoid some computational issue it encounters in testing multiple random effects. Extensive simulations and a real data analysis are used for evaluation of the proposed permutation test and its comparison with the Bayesian test. We find that both tests perform well, albeit the permutation test with the likelihood ratio statistic tends to provide a relatively higher power when testing multiple random effects. [ABSTRACT FROM AUTHOR]

Standard methods for two-sample tests such as the t-test and Wilcoxon rank sum test may lead to incorrect type I errors when applied to longitudinal or clustered data. Recent alternatives of two-sample tests for clustered data often require certain assumptions on the correlation structure and/or noninformative cluster size. In this paper, based on a novel pseudolikelihood for correlated data, we propose a score test without knowledge of the correlation structure or assuming data missingness at random. The proposed score test can capture differences in the mean and variance between two groups simultaneously. We use projection theory to derive the limiting distribution of the test statistic, in which the covariance matrix can be empirically estimated. We conduct simulation studies to evaluate the proposed test and compare it with existing methods. To illustrate the usefulness proposed test, we use it to compare self-reported weight loss data in a friends' referral group, with the data from the Internet self-joining group. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aim: To determine the mortality rate, immediate cause of death (CoD), and predictors of death in children with cerebral palsy (CP) in rural Bangladesh.Method: We carried out a prospective population-based surveillance study of children with CP aged 0 to 18 years registered with the Bangladesh Cerebral Palsy Register (BCPR) between January 2015 and December 2016, with subsequent follow-up until December 2017. Verbal autopsy was applied to assign immediate CoD. Crude mortality rates, hazard ratios of death, and survival probabilities were estimated.Results: Twenty-nine of the 678 children in the BCPR died during the study period, resulting in a crude mortality rate of 19.5 per 1000 person-years of observation (total follow-up duration 1486.8 person-years; mean 2y [standard deviation 6mo]). The leading immediate CoD was meningitis (n=9) and pneumonia (n=8). Survival probability and hazard ratio of death was significantly associated with age, Gross Motor Functional Classification System level, and associated impairments. Severe underweight and/or severe stunting was significantly overrepresented among deceased children than others in the cohort (p<0.05) when compared with the World Health Organization reference population.Interpretation: The majority of deaths were due to potentially preventable causes. The life expectancy of these children could have been extended by ensuring primary healthcare and nutritional supplementation.What This Paper Adds: Mortality rate in children with cerebral palsy (CP) in rural Bangladesh is 19.5 per 1000 person-years. The majority of children with CP died from potentially preventable and treatable conditions. Motor severity, associated impairments, and malnutrition make children with CP vulnerable to premature death in rural Bangladesh. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)