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Aims: To examine the current status of care and needs of adult congenital heart disease (ACHD) services in the Central and South Eastern European (CESEE) region. Methods and results: We obtained data regarding the national ACHD status for 19 CESEE countries from their ACHD representative based on an extensive survey for 2017 and/or 2018. Thirteen countries reported at least one tertiary ACHD centre with a median year of centre establishment in 2007 (interquartile range 2002–2013). ACHD centres reported a median of 2114 patients under active follow‐up with an annual cardiac catheter and surgical intervention volume of 49 and 40, respectively. The majority (90%) of catheter or surgical interventions were funded by government reimbursement schemes. However, all 19 countries had financial caps on a hospital level, leading to patient waiting lists and restrictions in the number of procedures that can be performed. The median number of ACHD specialists per country was 3. The majority of centres (75%) did not have ACHD specialist nurses. The six countries with no dedicated ACHD centres had lower Gross Domestic Product per capita compared to the remainder (P = 0.005). Conclusion: The majority of countries in CESEE now have established ACHD services with adequate infrastructure and a patient workload comparable to the rest of Europe, but important gaps still exist. ACHD care is challenged or compromised by limited financial resources, insufficient staffing levels, and reimbursement caps on essential procedures compared to Western Europe. Active advocacy and increased resources are required to address the inequalities of care across the continent. [ABSTRACT FROM AUTHOR]

Background: Homelessness is a traumatic experience, and can have a devastating effect on those experiencing it. People who are homeless often face significant barriers when accessing public services, and have often experienced adverse childhood events, extreme social disadvantage, physical, emotional and sexual abuse, neglect, low self‐esteem, poor physical and mental health, and much lower life expectancy compared to the general population. Rates of problematic substance use are disproportionately high, with many using drugs and alcohol to deal with the stress of living on the street, to keep warm, or to block out memories of previous abuse or trauma. Substance dependency can also create barriers to successful transition to stable housing. Objectives: To understand the effectiveness of different substance use interventions for adults experiencing homelessness. Search Methods: The primary source of studies for was the 4th edition of the Homelessness Effectiveness Studies Evidence and Gaps Maps (EGM). Searches for the EGM were completed in September 2021. Other potential studies were identified through a call for grey evidence, hand‐searching key journals, and unpacking relevant systematic reviews. Selection Criteria: Eligible studies were impact evaluations that involved some comparison group. We included studies that tested the effectiveness of substance use interventions, and measured substance use outcomes, for adults experiencing homelessness in high income countries. Data Collection and Analysis: Descriptive characteristics and statistical information in included studies were coded and checked by at least two members of the review team. Studies selected for the review were assessed for confidence in the findings. Standardised effect sizes were calculated and, if a study did not provide sufficient raw data for the calculation of an effect size, author(s) were contacted to obtain these data. We used random‐effects meta‐analysis and robust‐variance estimation procedures to synthesise effect sizes. If a study included multiple effects, we carried out a critical assessment to determine (even if only theoretically) whether the effects are likely to be dependent. Where dependent effects were identified, we used robust variance estimation to determine whether we can account for these. Where effect sizes were converted from a binary to continuous measure (or vice versa), we undertook a sensitivity analysis by running an additional analysis with these studies omitted. We also assessed the sensitivity of results to inclusion of non‐randomised studies and studies classified as low confidence in findings. All included an assessment of statistical heterogeneity. Finally, we undertook analysis to assess whether publication bias was likely to be a factor in our findings. For those studies that we were unable to include in meta‐analysis, we have provided a narrative synthesis of the study and its findings. Main Results: We included 48 individual papers covering 34 unique studies. The studies covered 15, 255 participants, with all but one of the studies being from the United States and Canada. Most papers were rated as low confidence (n = 25, or 52%). By far the most common reason for studies being rated as low confidence was high rates of attrition and/or differential attrition of study participants, that fell below the What Works Clearinghouse liberal attrition standard. Eleven of the included studies were rated as medium confidence and 12 studies as high confidence. The interventions included in our analysis were more effective in reducing substance use than treatment as usual, with an overall effect size of –0.11 SD (95% confidence interval [CI], −0.27, 0.05). There was substantial heterogeneity across studies, and the results were sensitive to the removal of low confidence studies (−0.21 SD, 95% CI [−0.59, 0.17] − 6 studies, 17 effect sizes), the removal of quasi‐experimental studies (−0.14 SD, 95% CI [−0.30, 0.02] − 14 studies, 41 effect sizes) and the removal of studies where an effect size had been converted from a binary to a continuous outcome (−0.08 SD, 95% CI [−0.31, 0.15] − 10 studies, 31 effect sizes). This suggests that the findings are sensitive to the inclusion of lower quality studies, although unusually the average effect increases when we removed low confidence studies. The average effect for abstinence‐based interventions compared to treatment‐as‐usual (TAU) service provision was –0.28 SD (95% CI, −0.65, 0.09) (6 studies, 15 effect sizes), and for harm reduction interventions compared to a TAU service provision is close to 0 at 0.03 SD (95% CI, −0.08, 0.14) (9 studies, 30 effect sizes). The confidence intervals for both estimates are wide and crossing zero. For both, the comparison groups are primarily abstinence‐based, with the exception of two studies where the comparison group condition was unclear. We found that both Assertative Community Treatment and Intensive Case Management were no better than treatment as usual, with average effect on substance use of 0.03 SD, 95% CI [−0.07, 0.13] and –0.47 SD, 95% CI [−0.72, −0.21] 0.05 SD, 95% CI [−0.28, 0.39] respectively. These findings are consistent with wider research, and it is important to note that we only examined the effect on substance use outcomes (these interventions can be effective in terms of other outcomes). We found that CM interventions can be effective in reducing substance use compared to treatment as usual, with an average effect of –0.47 SD, 95% CI (−0.72, −0.21). All of these results need to be considered in light of the quality of the underlying evidence. There were six further interventions where we undertook narrative synthesis. These syntheses suggest that Group Work, Harm Reduction Psychotherapy, and Therapeutic Communities are effective in reducing substance use, with mixed results found for Motivational Interviewing and Talking Therapies (including Cognitive Behavioural Therapy). The narrative synthesis suggested that Residential Rehabilitation was no better than treatment as usual in terms of reducing substance use for our population of interest. Authors' Conclusions: Although our analysis of harm reduction versus treatment as usual, abstinence versus treatment as usual, and harm reduction versus abstinence suggests that these different approaches make little real difference to the outcomes achieved in comparison to treatment as usual. The findings suggest that some individual interventions are more effective than others. The overall low quality of the primary studies suggests that further primary impact research could be beneficial. [ABSTRACT FROM AUTHOR]

Introduction: Research with young people (YP) is ethically challenging and bound in a complex maze of issues relating to power, voice and representation. Such sensitivities mean that the challenges raised in researching marginalised YP are often hard to navigate. This paper reports on research carried out with YP to explore links between mental health, school exclusion and involvement in criminal gangs. It aims to provide a practical guide to negotiating some of the methodological and ethical challenges experienced. Method: In‐depth interviews conducted with 28 YP (aged 14–24 years) who were gang involved or seen to be at risk of gang involvement. Research was conducted in youth clubs, alternative provision and youth justice settings. Results: Observations/Reflections We reflect on how navigating ethics can create barriers to involving YP as primary informants in research. We consider why it is important to overcome these hurdles and how public engagement work with recognised gatekeepers and the use of creative interview methods can facilitate meaningful encounters, where YP feel able to share valuable insights into their lives. Conclusion: Alongside a number of specific learning points, the paper reflects on theories behind research with YP, including the need for recognition of power imbalances and reflexivity. It concludes with thoughts on the practical realities of achieving meaningful participation or an 'authentic voice' with marginalised groups and the importance of this in informing policy and practice. Patient or Public Contribution: The focus of this work was to collect experiences of YP who are recognised as gang‐involved or at risk of being so, with a view to informing health and education policies. The scoping study for the project involved extensive public engagement work with YP exploring and trialling suitable methods of accessing, recruiting and ultimately interviewing this target group. This is central to the discussion within the body of the paper. [ABSTRACT FROM AUTHOR]

Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Methods: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention. Results: Nineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Conclusions: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population. Patient or Public Contribution: Three patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery. [ABSTRACT FROM AUTHOR]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Copyright of People & Nature 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.)

Background: Hepatitis B is a major public health concern as one third of the world's population is infected with hepatitis B virus (HBV). The risk of HBV infection remains primarily through percutaneous or mucosal contact with infected blood or body fluids. Aim: To update the society on hepatitis B immunization strategies and its associated factors. Materials and Methods: The review paper utilized different search engines such as Pubmed Central, Scopus, Web of Science, Google Scholar, and so on to conduct this review paper. Results: Improving immunity through general vaccination recommendations has reduced the number of chronic hepatitis B cases among children and adolescents, but an influx of infections from endemic countries has increased the number of chronically infected adults. This is due to immigration from endemic countries to Hepatitis less burden areas like developed countries. Introduction of infant immunization programs in some countries has reportedly reduced the prevalence of HBV infection and reduced the incidence of liver cancer in children and young adults. Conclusion: While hepatitis B vaccination coverage is low, a significant number of people are not adhering to full hepatitis B vaccination posing a potential hazard to health. [ABSTRACT FROM AUTHOR]

Background: Involving men and boys as both users and supporters of Family Planning (FP) is now considered essential for optimising maternal and child health outcomes. Evidence on how to engage men and boys to meet FP needs is therefore important. Objectives: The main objective of this review was to assess the strength of evidence in the area and uncover the effective components and critical process‐ and system‐level characteristics of successful interventions. Search Methods: We searched nine electronic databases, seven grey literature databases, organisational websites, and the reference lists of systematic reviews relating to FP. To identify process evaluations and qualitative papers associated with the included experimental studies, we used Connected Papers and hand searches of reference lists. Selection Criteria: Experimental and quasi‐experimental studies of behavioural and service‐level interventions involving males aged 10 years or over in low‐ and middle‐income countries to increase uptake of FP methods were included in this review. Data Collection and Analysis: Methodology was a causal chain analysis involving the development and testing of a logic model of intervention components based on stakeholder consultation and prior research. Qualitative and quantitative data relating to the evaluation studies and interventions were extracted based on the principles of 'effectiveness‐plus' reviews. Quantitative analysis was undertaken using r with robust variance estimation (RVE), meta‐analysis and meta‐regression. Qualitative analysis involved 'best fit' framework synthesis. Results: We identified 8885 potentially relevant records and included 127 in the review. Fifty‐nine (46%) of these were randomised trials, the remainder were quasi‐experimental studies with a comparison group. Fifty‐four percent of the included studies were assessed as having a high risk of bias. A meta‐analysis of 72 studies (k = 265) showed that the included group of interventions had statistically significantly higher odds of improving contraceptive use when compared to comparison groups (odds ratio = 1.38, confidence interval = 1.21 to 1.57, prediction interval = 0.36 to 5.31, p < 0.0001), but there were substantial variations in the effect sizes of the studies (Q = 40,647, df = 264, p < 0.0001; I2 = 98%) and 73% was within cluster/study. Multi‐variate meta‐regression revealed several significant intervention delivery characteristics that moderate contraceptive use. These included community‐based educational FP interventions, interventions delivered to women as well as men and interventions delivered by trained facilitators, professionals, or peers in community, home and community, or school settings. None of the eight identified intervention components or 33 combinations of components were significant moderators of effects on contraceptive use. Qualitative analysis highlighted some of the barriers and facilitators of effective models of FP that should be considered in future practice and research. Authors' Conclusions: FP interventions that involve men and boys alongside women and girls are effective in improving uptake and use of contraceptives. The evidence suggests that policy should continue to promote the involvement of men and boys in FP in ways that also promote gender equality. Recommendations for research include the need for evaluations during conflict and disease outbreaks, and evaluation of gender transformative interventions which engage men and boys as contraceptive users and supporters in helping to achieve desired family size, fertility promotion, safe conception, as well as promoting equitable family planning decision‐making for women and girls. [ABSTRACT FROM AUTHOR]

Aim: To clarify whether the Whitney Comorbidity Index (WCI) is useful in Asian adults with cerebral palsy (CP) and whether aspiration pneumonia and pressure ulcers improved the prognostic significance of the WCI. Method: This cohort study evaluated individuals aged at least 18 years with CP in Japan. We used Cox proportional hazards regression to analyse 2‐year mortality rates. The predictive performance of the Charlson Comorbidity Index, Elixhauser Comorbidity Index, and WCI were compared as comorbidity assessment criteria. Aspiration pneumonia and pressure ulcers were added to the Cox models, and their impact on hazard ratios was determined. Results: Of the 2232 adults with CP, 72 died during the 2 years. The model with a previously reported weighted WCI with aspiration pneumonia and pressure ulcers produced the best fit. Additionally, the hazard risk of 2‐year mortality for an unweighted WCI score of at least 4 was 2.56; when CP‐specific comorbidities were added, it increased to 8.94. Interpretation: This study showed that the WCI can be used in Asian adults with CP. Furthermore, assessing patient age, aspiration pneumonia, and pressure ulcers in addition to the WCI increased the predictive value for mortality. Our findings indicate that the WCI can promote valid comparisons between international populations. What this paper adds: The Whitney Comorbidity Index (WCI) is useful among adults with cerebral palsy, irrespective of ethnic differences.Assessment of aspiration pneumonia and pressure ulcers increased the WCI predictive value.The WCI helps identify adults with cerebral palsy at risk of adverse outcomes. What this paper adds: The Whitney Comorbidity Index (WCI) is useful among adults with cerebral palsy, irrespective of ethnic differences.Assessment of aspiration pneumonia and pressure ulcers increased the WCI predictive value.The WCI helps identify adults with cerebral palsy at risk of adverse outcomes. This article's abstract has been translated into Japanese. Follow the links from the abstract to view the translations. [ABSTRACT FROM AUTHOR]

Background: Suicide is a major public health risk requiring targeted suicide prevention interventions. The principles of co‐production are compatible with tailoring suicide prevention interventions to meet an individual's needs. Aims: This review aimed to evaluate the role and effectiveness of co‐produced community‐based suicide prevention interventions among adults. Methods: Four electronic databases (PsycInfo, CINAHL, MEDLINE and web of science) were systematically searched. A narrative synthesis was conducted. Results: From 590 papers identified through searches, 14 fulfilled the inclusion criteria. Most included studies elicited the views and perspectives of stakeholders in a process of co‐design/co‐creation of community‐based suicide prevention interventions. Conclusion: Stakeholder involvement in the creation of community‐based suicide prevention interventions may improve engagement and give voice to those experiencing suicidal crisis. However, there is limited evaluation extending beyond the design of these interventions. Further research is needed to evaluate the long‐term outcomes of co‐produced community‐based suicide prevention interventions. Patient and Public Involvement: This paper is a systematic review and did not directly involve patients and/or the public. However, the findings incorporate the views and perspectives of stakeholders as reported within the studies included in this review, and the findings may inform the future involvement of stakeholders in the design, development and delivery of community‐based suicide prevention interventions for adults. [ABSTRACT FROM AUTHOR]

Nourishment can have profound effects on social behaviour, including aggressive interactions between individuals. The prevailing theoretical and empirical understanding is that when nutritional resources are limited, inter‐individual competition and aggression will increase. Alternatively, studies from some group‐living species suggest limited nutrition can lead to increased cooperation, including by a reduction in inter‐individual aggression. Thus, a general model for understanding how and why nutritional resource limitation affects aggressive behaviour remains elusive.We suggest that the link between nourishment and future reproductive potential may be a key missing element of models that predict how nutritional resource availability affects inter‐individual aggression in social animals.We investigated how nourishment influenced intra‐colony aggression and its molecular correlates in colonies of the social paper wasp Polistes fuscatus, which contain workers that maintain flexible reproductive potential as adults. We subjected colonies to either a high or low feeding treatment, and examined subsequent effects on behaviour, nutritional/reproductive physiology and brain gene expression.We found that nutritional restriction reduced aggressive interactions. Thus, resource limitation was linked to reduced intra‐group conflict. Thus, individual worker paper wasps appear to have the capacity to adjust their behaviour (e.g. reduced aggression) in response to nutritional stress; this suggests they may invest nutritional resources in the colony when resources are limiting, and in the self (and possible future reproduction) when resources are abundant.Differential brain gene expression results implicate two well‐known neuropeptides associated with aggression and/or nutrient signalling across taxa, Tachykinin and Neuropeptide F, as possible mediators of nutritionally dependent intra‐colony aggression. This adds to a growing understanding that deeply conserved genes associated with core, conserved behaviours such as feeding and aggression in solitary insects can play a role in the regulation of social plasticity in more highly social species. A free Plain Language Summary can be found within the Supporting Information of this article. [ABSTRACT FROM AUTHOR]

Objective To conduct a systematic appraisal of the published literature reviews related to the impact of cancer on everyday life. This theme was identified as the top priority area for research by participants in the Macmillan Listening Study, which was the first UK-wide public consultation exercise to identify patients' priorities for cancer research. Search strategy The top priority area was divided into ten sub-themes, and a modified systematic review was undertaken for each sub-theme using electronic searches. Inclusion criteria Literature review papers were included if they were written in English, involved patients diagnosed ≥18 years, any cancer types and published between 2000 and 2006. Data extraction and synthesis Two thousand and two hundred and fifty-two potentially eligible papers were identified. Abstracts were read by the first author and selected for inclusion in the review. Twenty percentages of the papers were also read independently by other authors. Sixty-two review papers were finally selected. Main results The systematic appraisal revealed that some sub-themes of the patient-identified priority area (e.g., how to support family members of cancer patients) were under-researched, while other sub-themes (e.g., anxiety and depression experienced by cancer patients) had been explored to some extent. Certain areas of research interest to patients were found to have been explored; however, their significance was limited by the quality of the research. Conclusion The systematic appraisal highlights important areas for future research and the need for more effective dissemination of study findings to wider audiences, including service users. This study also indicates the need for further research to enhance the generalizability and/or significance of findings. [ABSTRACT FROM AUTHOR]

This paper examines the impact of Medicaid expansions to parents and childless adults on adult mortality. Specifically, we evaluate the long‐run effects of eight state Medicaid expansions from 1994 through 2005 on all‐cause, healthcare‐amenable, non‐healthcare‐amenable, and HIV‐related mortality rates using state‐level data. We utilize the synthetic control method to estimate effects for each treated state separately and the generalized synthetic control method to estimate average effects across all treated states. Using a 5% significance level, we find no evidence that Medicaid expansions affect any of the outcomes in any of the treated states or all of them combined. Moreover, there is no clear pattern in the signs of the estimated treatment effects. These findings imply that evidence that pre‐ACA Medicaid expansions to adults saved lives is not as clear as previously suggested. [ABSTRACT FROM AUTHOR]

Aim: To explore the feasibility of using an adaptive behaviour profile (ABP) assessment generated from a well‐known measure—the Vineland Adaptive Behavior Scales, Second Edition (VABS‐II)—as an instrument for outcome measures in adolescents and adults with Dravet syndrome. Method: We administered the VABS‐II to 35 adolescents and adults with Dravet syndrome (15 males; mean age 24 years, SD 8 years, range: 12–46 years) and collected epilepsy history and neurological features at the time of assessment. We conducted a cross‐sectional analysis of VABS‐II raw scores and performed cluster analysis to identify different subgroups. We then explored possible relationships between clinical and epilepsy features, ABPs, and age. Results: Most participants obtained the minimum standard scores in the various VABS‐II subdomains, while the raw score analysis outlined interindividual and intraindividual differences among skills. We found two subpopulations: one with a 'lower' ABP and one with a 'higher' ABP, corresponding respectively to individuals in whom myoclonic seizures or generalized spike‐and‐wave activity were present ('complete phenotype') or absent ('incomplete phenotype') on electroencephalography. Interpretation: This study further delineates the natural history of Dravet syndrome. The assessment of an ABP through the VABS‐II raw score analysis provides a means by which to illustrate profiles of adaptive behaviour in adolescents and adults with Dravet syndrome but shows limitations related to poor sensitivity in measuring fine clinical details. There is a need for new and more specific tools to monitor patients with developmental and epileptic encephalopathies. What this paper adds: Most adults with Dravet syndrome obtained the minimum standard scores in the Vineland Adaptive Behavior Scales, Second Edition (VABS‐II) subdomains.The VABS‐II raw score analysis showed interindividual and intraindividual variability.Individuals with myoclonic seizures and/or generalized spike‐and‐wave activity on electroencephalography showed a worse adaptive behaviour profile. [ABSTRACT FROM AUTHOR]

Aim: To quantify the microstructural differences in the cervical‐thoracic spinal cord of adults with cerebral palsy (CP). Method: Magnetic resonance imaging of the proximal spinal cord (C6–T3) was conducted on a cohort of adults with CP (n=13; mean age=31y 11mo, standard deviation [SD] 8y 7mo; range=20y 8mo–47y 6mo; eight females, five males) and population norm adult controls (n=16; mean age=31y 4mo, SD 9y 9mo; range=19y 4mo–49y 5mo; seven females, nine males). The cross‐sectional area (CSA) of the spinal cord, gray and white matter, magnetization transfer ratio (MTR), and fractional anisotropy of the cuneatus and corticospinal tracts were calculated. Results: The total spinal cord CSA and proportion of the spinal cord gray matter CSA were significantly decreased in the adults with CP. The corticospinal tracts' MTR was lower in the adults with CP. Individuals that had reduced gray matter also tended to have reduced MTR in their corticospinal tracts (r=0.42, p=0.029) and worse hand dexterity clinical scores (r=0.53, p=0.004). Interpretation: These results show that there are changes in the spinal cord microstructure of adults with CP. Ultimately, these microstructural changes play a role in the extent of the hand sensorimotor deficits seen in adults with CP. What this paper addsAdults with cerebral palsy (CP) have a reduced spinal cord cross‐sectional area (CSA).Spinal cord gray matter is reduced in adults with CP.Spinal cord CSA is associated with hand dexterity.Magnetization transfer ratio of corticospinal tracts was lower in adults with CP. What this paper adds: Adults with cerebral palsy (CP) have a reduced spinal cord cross‐sectional area (CSA).Spinal cord gray matter is reduced in adults with CP.Spinal cord CSA is associated with hand dexterity.Magnetization transfer ratio of corticospinal tracts was lower in adults with CP. This article is commented on by Cohen‐Adad on page 896 of this issue. [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.)

Venous leg ulcers (VLUs) are open skin lesions of the lower legs arising in areas affected by venous hypertension that are associated with substantial morbidity. Clinical trials testing innovative approaches to improve healing outcomes are critically needed because standard therapies are often ineffective. However, patients with VLUs frequently have multiple physical, emotional and socioeconomic challenges that can negatively impact their decision to enrol in a clinical trial. To benefit clinical researchers and ultimately the community of patients with chronic wounds, this paper describes the monitoring and modification of recruitment strategies in an ongoing clinical trial testing effects of omega‐3 fatty acid oral supplementation on VLU healing in ageing adults (n = 208). Multiple modifications over time in this study have targeted participation barriers identified through data monitoring and include expanding inclusion criteria, adding recruitment sites, enhancing communication methods, and meeting patients' transportation needs. Recruitment activities from January 2019 to June 2022 have resulted in 57 participants (mean age: 63.7 years). Overall, the recruitment rate is 42.5% of patients contacted during face‐to‐face visits. Overcoming barriers to participation is key to helping patients with VLUs interested in research enrol in clinical trials aiming to improve healing outcomes in this vulnerable population. [ABSTRACT FROM AUTHOR]

Langerhans cell histiocytosis (LCH) is an uncommon proliferative disease with an unknown cause. Its clinical manifestations vary and can involve a variety of organs. To diagnose LCH, radiographs, histopathological and immunohistochemical findings are essential. The gold standard for a definite diagnosis is positive CD1a/CD207 and S100 in the immunohistochemical results. Different treatment plans are available for patients struggling with LCH. To our knowledge, the LCH incidence rate is about 8.9 in one million children and 1–2 cases in one million adults. Our case shows the importance of early diagnosis of this rare condition for the prevention of any further spreading. This case report is about a 35‐year‐old male patient struggling with diabetes insipidus with a chief complaint of tooth mobility. Based on his X‐ray radiographs, osteolytic lesions were found. A biopsy was performed, and due to histopathological and immunohistochemical findings, it was diagnosed as a case of LCH in adults. This paper shows that although the incidence rate of LCH is rare in adults, dealing with a patient struggling with diabetes insipidus and osteolytic bone lesions with an unknown cause, LCH must be taken into consideration. Due to the fact that LCH's first manifestations are mostly first oral, its good prognosis in the early stages, and if it progresses, it can turn fatal, it is important that dentists are aware of this disease, its clinical manifestations, and patient management. In case of suspicion, X‐ray examination, biopsy, histopathological, and immunohistochemical exams must be performed. [ABSTRACT FROM AUTHOR]

Aim: To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. Method: We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. Results: In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I–IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III–V) participated. We identified 132 unique second‐level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. Interpretation: Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper addsIncluding the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP).Adults with CP perceive environmental factors as essential elements for everyday functioning.Adults with intellectual disability should be considered as a group with specific problems. What this paper adds: Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP).Adults with CP perceive environmental factors as essential elements for everyday functioning.Adults with intellectual disability should be considered as a group with specific problems. This article is commented on by Escorpizo on page 766 of this issue. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis. Objective: To describe how our qualitative study, exploring young peoples' perceptions on the feasibility of using technology to detect mental health deterioration, was co‐produced using principles of co‐production, whilst reflecting on impact, challenges and recommendations. Methods: Young people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co‐production. Reflections from researchers and young people were collected throughout. Results: Seven young people formed an initial Young People's Advisory Group (YPAG); three became co‐researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision‐making. The resulting co‐produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact. Conclusions: To our knowledge, this is the first qualitative mental health study to be co‐produced using the principles of co‐production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co‐produced future research. Although co‐production takes time, it makes significant impact to the research, researchers and co‐researchers. Flexible funding for spontaneous suggestions from co‐researchers and more time for interview training is recommended. [ABSTRACT FROM AUTHOR]

Systematic reviews (SRs) and meta‐analyses (MAs) are of great importance for basing clinical decisions. However, misleading interpretations may result when informed decisions rest on biased review papers with methodological issues. To evaluate which treatment is optimal, an overview was made of SRs and MAs to establish the quality and certainty of meta‐evidence published on the efficacy of laser‐based refractive surgery techniques for treating myopia in adults. A search was made in five databases and was updated using Really Simple Syndication (RSS) feed appliances up to April 2021; SRs with or without MAs were included. Methodological quality was appraised using the AMSTAR‐2 tool. The best available reviews were summarized using the GRADE approach. The corrected covered area (CCA) was used to determine the degree of over‐representation of publications. The risk of bias of the primary studies was disclosed visually. Thirty‐six studies published between 2003 and 2021 were included. Twenty SRs (56%) were conducted in China. The most studied comparisons were SMILE versus FS‐LASIK (19%) and FS‐LASIK versus MM‐LASIK (11%). Of the 251 overlapping index publications, 165 were unique (CCA = 0.015%), representing a negligible risk of skewed reporting. The AMSTAR‐2 tool showed most SRs to have critically low or low quality. Nine reviews presented moderate quality. The GRADE approach of the 41 a priori outcomes evidenced critically low and low certainty of evidence. Only the spherical equivalent refraction changes at 12 months between LASEK and PRK showed moderate certainty of evidence, favouring PRK (mean difference 0.06, 95%CI [−0.02 to 0.14], I2 = 0%; p ≥ 0.05). Index trials among less biased reviews are prone to selection, performance and reporting bias. The appraised techniques exhibit comparable results in terms of efficacy. There is moderate certainty of evidence in favour of the use of PRK over LASEK in terms of the spherical equivalent refraction error changes at 1 year of follow‐up. Most appraised SRs presented methodological flaws in critical domains, resulting in a low to critically low certainty of evidence after GRADE appraisal. Therefore, investigators need to study and compare the different laser‐based refractive techniques to provide better evidence‐based medicine. Further well‐designed, high‐quality clinical trials and SRs are needed to reappraise the current findings. [ABSTRACT FROM AUTHOR]

Aim: To develop a new comorbidity index for adults with cerebral palsy (CP), the Whitney Comorbidity Index (WCI), which includes relevant comorbidities for this population and better predicts mortality than the Charlson Comorbidity Index (CCI) and Elixhauser Comorbidity Index (ECI). Method: Data from the Optum Clinformatics Data Mart was used for this retrospective cohort study. Diagnosis codes were used to identify adults aged 18 years or older with CP (n=1511 females, n=1511 males; mean [SD; range] age=48y [19y 2mo; 18–89y]) and all comorbidities in the year 2014. The WCI was developed based on the comorbidities of the CCI and ECI and other relevant comorbidities associated with 2‐year mortality using Cox regression and competing risk analysis. The WCI was examined as unweighted (WCIunw) and weighted (WCIw). The model fit and discrimination (C‐statistic) of each index was assessed using Cox regression. Results: Twenty‐seven comorbidities were included in the WCI; seven new comorbidities that were not part of the CCI or ECI were added. The WCIunw and WCIw showed a better model fit and discrimination for 1‐ and 2‐year mortality compared to the CCI and ECI. The WCIunw and WCIw were strong predictors for 1‐ and 2‐year mortality (C‐statistic [95% confidence interval] ranging from 0.81 [0.76–0.85] to 0.88 [0.82–0.94]). Interpretation: The new WCI, designed to include clinically relevant comorbidities, provides a better model fit and discrimination of mortality for adults with CP. What this paper adds: Common comorbidity indices exclude relevant comorbidities for adults with cerebral palsy (CP).A new comorbidity index for adults with CP was created by harmonizing clinical theory and data‐driven methods.The Whitney Comorbidity Index better predicted 1‐ and 2‐year mortality than other commonly used comorbidity indices. What this paper adds: Common comorbidity indices exclude relevant comorbidities for adults with cerebral palsy (CP).A new comorbidity index for adults with CP was created by harmonizing clinical theory and data‐driven methods.The Whitney Comorbidity Index better predicted 1‐ and 2‐year mortality than other commonly used comorbidity indices. This article is commented on by Streiner on page 246 of this issue. [ABSTRACT FROM AUTHOR]

The role of parent factors, such as distress and protective behaviors, on pain and functional outcomes of emerging adults living with chronic pain has been largely unexplored. The effects of helicopter parenting and developmental changes occurring during this transition period between adolescence and adulthood (commonly defined as the ages between 18 and 30 years) may exacerbate the pain experience and have the potential to influence chronic pain management. Clinical practice, with an additional focus on supporting the parent(s), may aid in meeting the needs of this population. In this paper, we review the available literature on (a) the socio‐cultural shift in parenting over the past decade with a focus on helicopter parenting; (b) the impact of this parenting style on the pain experience and outcomes of emerging adults living with chronic pain; (c) provide recommendations for chronic pain management with a focus on the parent‐emerging adult dyad; and (d) conclude with future research recommendations. This narrative review is the first to consider the impacts and outcomes of helicopter parenting on emerging adults with chronic pain. This review describes the Emerging Adulthood developmental stage and evaluates available literature on the socio‐cultural shift in parenting over the past decade with a focus on helicopter parenting, and the impact of this parenting style on the pain experience and outcomes of emerging adults living with chronic pain. We also provide recommendations for chronic pain management for emerging adults with a focus on the parent‐child dyad. [ABSTRACT FROM AUTHOR]

LINKED CONTENT: This article is linked to Canivet et al papers. To view these articles, visit https://doi.org/10.1111/apt.16262 [ABSTRACT FROM AUTHOR]

Aim: To determine if pain is associated with 12-month incidence of mood affective disorders (MAD) in adults with cerebral palsy (CP).Method: Data from Optum Clinformatics® Data Mart (2013-2016) were used for this retrospective cohort study. Diagnostic codes were used to identify adults (≥18y) with CP, incident cases of MAD, and covariates (other neurodevelopmental conditions, sleep disorders, arthritis). Pain (any type, location) was identified between 1st October 2014 and 30th September 2015. The pain group was divided into new or consistent pain if they had a history of pain (i.e. consistent) in the 12 months before their first pain claim date. Crude incidence rates of MAD (expressed per 100 person-years) were estimated. Cox regression was used to estimate hazard ratio (95% confidence interval [CI]) of MAD after adjusting for covariates.Results: Adults that had new pain (n=859; incidence rate=15.5) or consistent pain (n=1303; incidence rate=17.9) had greater crude incidence rate of MAD compared to adults without pain (n=3726; incidence rate=5.9). The elevated rate of MAD remained after adjusting for covariates, for new pain (hazard ratio=2.4; 95% CI=1.9-3.0) and consistent pain (hazard ratio=2.1; 95% CI=1.7-2.7).Interpretation: Pain is associated with greater incidence of MAD in adults with CP. This association remained after accounting for potential confounding factors.What This Paper Adds: What this paper adds Pain was associated with higher 12-month incidence of mood affective disorders (MAD). The 12-month MAD incidence was similar between new and consistent pain groups. The MAD incidence remained higher adjusting for neurodevelopmental comorbidities, sleep disorders, and arthritis. [ABSTRACT FROM AUTHOR]

Aim: To retrospectively profile acute hospital admissions for a defined cohort of adults with cerebral palsy (CP). Method: Five years of health service data were interrogated to identify acute health service use by adults with CP. Admission types were described, admission reasons categorized using International Classification of Diseases, 10th Revision codes, and length of stay (LOS) calculated. Any differences between paediatric and adult subsets were explored. Results: Individuals with CP constituted 2922 admissions. Of these, 850 (29%) were adult admissions. There were significant differences between admission reasons for paediatric and adult cohorts, with adults predominantly seeking hospital admission for emergency rather than planned care (emergency reason: adults 62.1%, paediatrics 25.2%; p<0.001). The median adult admission LOS was longer than that of children (p<0.001). The primary diagnosis admission reason in the adult data set was respiratory illness (20%) followed closely by gastrostomy dysfunction (19%). Interpretation: Adults with CP predominantly access acute hospital services for emergency health care. A high frequency of admissions is associated with respiratory illness and gastrostomy dysfunction in adults with CP. What this paper addsAdults with cerebral palsy (CP) access acute inpatient services for emergency health care.Hospital admissions are predominantly because of respiratory illness and gastrostomy dysfunction.Admission length of stay is longer for adults than children.Many adults with CP require hospitalization more than once a year. What this paper addsAdults with cerebral palsy (CP) access acute inpatient services for emergency health care.Hospital admissions are predominantly because of respiratory illness and gastrostomy dysfunction.Admission length of stay is longer for adults than children.Many adults with CP require hospitalization more than once a year. This article is commented on by Yu, Coller, and Kind on page 889 of this issue. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [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.)

Summary: Background: Improved knowledge of the molecular pathophysiology and immunopathogenesis of cholestatic liver diseases in recent years has led to an increased interest in developing novel therapies. Patients with cholestatic liver disease often require different approaches to assessment and management of suspected drug‐induced liver injury (DILI) compared to those with healthy livers and those with parenchymal liver diseases. At present, there are no regulatory guidelines or society position papers, that systematically address best practices pertaining to detection of DILI in these patients. Aims: To outline best practices for detection, assessment and management of suspected acute DILI during clinical trials in adults with the cholestatic liver diseases – Primary Biliary Cholangitis (PBC) and Primary Sclerosing Cholangitis (PSC). Methods: This is one of the several papers developed by the IQ DILI Initiative, which is comprised of members from 16 pharmaceutical companies, in collaboration with DILI experts from academia and regulatory agencies. The contents are the result of an extensive literature review, as well as in‐depth discussions among industry, regulatory and academic DILI experts, to achieve consensus recommendations on DILI‐related issues occurring during clinical trials for cholestatic liver diseases. Results: Recommended best practices are outlined pertaining to hepatic eligibility criteria, monitoring of liver tests, approach to a suspected DILI signal, and hepatic discontinuation rules. Conclusions: This paper provides a framework for the approach to detection, assessment and management of suspected acute DILI occurring during clinical trials in adults with cholestatic liver disease. [ABSTRACT FROM AUTHOR]

LINKED CONTENT: This article is linked to Paul et al paper. To view this article, visit https://doi.org/10.1111/apt.16133 [ABSTRACT FROM AUTHOR]

Background: From the point of view of machine construction and hydrodynamics, this paper innovatively proposes that the essence of high‐flow nasal cannula (HFNC) is a constant‐flow mode in noninvasive ventilator (NIVCFM). This study enrolled healthy adults as study subjects to assess the subjective comfort assessed by visual analog scoring scale of NIVCFM/HFNC and objective comfort measured by the noise level generated by NIVCFM/HFNC, aiming to provide a scientific basis for the rational clinical application of NIVCFM/HFNC. Methods: Forty‐four healthy adults participated in this study. The noise generated by NIVCFM/HFNC is measured, and the comfort is evaluated during NIVCFM delivery at flow rates of 0, 5, 10, 15, 20, 25, 30, 35, 40, 45, 50, 55, and 60 L/min. Results: When the ventilator flow rate is 60 L/min, the maximum noise is 65.9 dB, increasing noise by 23.7 dB from a baseline of 42.2 dB at the flow rate of 0 L/min. There was a strong nonlinear positive correlation between the noise level and the flow rates. The median score for dry mouth, nose or throat, dysphagia, sore throat, and other discomfort was 0. The median score for dyspnea was 0 at 0–30 L/min, 1 at 35–55 L/min, and 2 at 60 L/min. Conclusions: The grater the flow rate, the greater the noise generated by NIVCFM/HFNC (<65.9 dB). The maximum flow rate that most healthy adults can able to tolerate is 30 L/min, and the main discomfort is dyspnea. [ABSTRACT FROM AUTHOR]

Middle meningeal vessels, dural venous sinuses, and emissary veins leave imprints and canals in the endocranium, and thus provide evidence of vascular patterns in osteological samples. This paper investigates whether craniovascular morphology undergoes changes in craniosynostotic human skulls, and if specific alterations may reflect structural and functional relationships in the cranium. The analyzed osteological sample consists of adult individuals with craniosynostoses generally associated with dolichocephalic or brachycephalic proportions, and a control sample of anatomically normal adult skulls. The pattern and dominance of the middle meningeal artery, the morphology of the confluence of the sinuses, and the size and number of the emissary foramina were evaluated. Craniovascular morphology was more diverse in craniosynostotic skulls than in anatomically normal skulls. The craniosynostotic skulls often displayed enlarged occipito‐marginal sinuses and more numerous emissary foramina. The craniosynostotic skulls associated with more brachycephalic morphology often presented enlarged emissary foramina, while the craniosynostotic skulls associated with dolichocephalic effects frequently displayed more developed posterior branches of the middle meningeal artery. The course and morphology of the middle meningeal vessels, dural venous sinuses, and emissary veins in craniosynostotic skulls can be related to the redistribution of growth forces, higher intracranial pressure, venous hypertension, or thermal constraints. These functional and structural changes are of interest in both anthropology and medicine, involving epigenetic traits that concern the functional and ontogenetic balance between soft and hard tissues. [ABSTRACT FROM AUTHOR]

Young children, like adults, understand that human agents can flexibly choose different actions in different contexts, and they evaluate these agents based on such choices. However, little is known about children's tendencies to attribute the capacity to choose to robots, despite increased contact with robotic agents. In this paper, we compare 5‐ to 7‐year‐old children's and adults' attributions of free choice to a robot and to a human child by using a series of tasks measuring agency attribution, action prediction, and choice attribution. In morally neutral scenarios, children ascribed similar levels of free choice to the robot and the human, while adults were more likely to ascribe free choice to the human. For morally relevant scenarios, however, both age groups considered the robot's actions to be more constrained than the human's actions. These findings demonstrate that children and adults hold a nuanced understanding of free choice that is sensitive to both the agent type and constraints within a given scenario. [ABSTRACT FROM AUTHOR]

There is consensus that the adult lexicon exhibits lexical competition. In particular, substantial evidence demonstrates that words with more phonologically similar neighbors are recognized less efficiently than words with fewer neighbors. How and when these effects emerge in the child's lexicon is less clear. In the current paper, we build on previous research by testing whether phonological onset density slows lexical access in a large sample of 100 English‐acquiring 30‐month‐olds. The children participated in a visual world looking‐while‐listening task, in which their attention was directed to one of two objects on a computer screen while their eye movements were recorded. We found moderate evidence of inhibitory effects of onset neighborhood density on lexical access and clear evidence for an interaction between onset neighborhood density and vocabulary, with larger effects of onset neighborhood density for children with larger vocabularies. Results suggest the lexicons of 30‐month‐olds exhibit lexical‐level competition, with competition increasing with vocabulary size. [ABSTRACT FROM AUTHOR]

Various aspects of semantic features drive early vocabulary development, but less is known about how the global and local structure of the overall semantic feature space influences language acquisition. A feature network of English words was constructed from a large database of adult feature production norms such that edges in the network represented feature distances between words (i.e., Manhattan distances of probability distributions of features elicited for each pair of words). A word's global feature distinctiveness is measured with respect to all other words in the network and a word's local feature distinctiveness is measured relative to words in sub‐networks derived from clustering analyses. This paper investigates how feature distinctiveness of individual words at local and global scales of the network influences language acquisition. Regression analyses indicate that global feature distinctiveness was associated with earlier age of acquisition ratings, and was a stronger predictor of age of acquisition than local feature distinctiveness. These results suggest that the global structure of the semantic feature network could play an important role in language acquisition, whereby globally distinctive concepts help to structure vocabulary development over the lifespan. [ABSTRACT FROM AUTHOR]

Aim: To validate the Whitney Comorbidity Index (WCI), which was recently developed to monitor disease status for adults with cerebral palsy (CP), and to identify WCI scores associated with an increased mortality risk using a representative sample of adults with CP.Method: Data from 2016 to 2018 were used from a random 20% sample from the fee-for-service Medicare database for this retrospective cohort study. The WCI was examined as unweighted (WCIunw ) and weighted (WCIw ) among adults at least 18 years old with CP. Cox regression models were developed with mortality as the outcome after adjusting for demographics. A concordance statistic (C-statistic) of at least 0.70 was considered as showing sufficient validity. The hazard ratio of mortality for each WCI score was estimated. Secondary analyses were performed for subgroups with co-occurring epilepsy and/or intellectual disabilities.Results: For the entire group (n=16 728) and subgroups, the WCI showed sufficient validity (C-statistic 0.73-0.81). For the entire group, the mortality rate was elevated for a score of 1 compared with 0 from the WCIunw (hazard ratio 3.06; 95% confidence interval [CI] 1.52-6.17) and WCIw (hazard ratio 4.08; 95% CI 1.69-9.85), and became larger with each WCI score. Results were similar for the subgroups.Interpretation: The WCI is a valid marker for health/disease status for adults with CP. Several WCI score thresholds were identified to assist in clinical decision making for preventive medicine and intervention implementation. What this paper adds The Whitney Comorbidity Index (WCI) is valid among 16 728 adults with CP. The WCI is valid for those with co-occurring epilepsy and/or intellectual disabilities. Thresholds of the WCI score were identified to assist clinical decision making. [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]

LINKED CONTENT: This article is linked to Sharma et al papers. To view these articles, visit https://doi.org/10.1111/apt.16369 and https://doi.org/10.1111/apt.16910 [ABSTRACT FROM AUTHOR]

Adults with congenital heart disease - we need more Europe for a better care The authors reported that 13 out of 19 CESEE countries (corresponding to 68%) had at least one tertiary ACHD centre, while 11 out of those 13 were members of the European Union (EU). B This article refers to 'European Society of Cardiology Working Group on Adult Congenital Heart Disease and Study Group for Adult Congenital Heart Care in Central and South Eastern European Countries consensus paper: current status, provision gaps and investment required' by M. Brida I et al i ., published in this issue on pages 445-453. b ' I Coming together is the beginning i . [Extracted from the article]

This paper demonstrates the use of a genetic algorithm (GA) for the optimization of a dosing guideline. GAs are well‐suited to derive combinations of doses and dosing intervals that go into a dosing guideline when the number of possible combinations rule out the calculation of all possible outcomes. GAs also allow for different constraints to be imposed on the optimization process to safeguard the clinical feasibility of the dosing guideline. In this work, we demonstrate the use of a GA for the optimization of intermittent vancomycin administration in adult patients. Constraints were placed on the dose strengths, the length of the dosing intervals, and the maximum infusion rate. In addition, flexibility with respect to the timing of the first maintenance dose was included in the optimization process. The GA‐based optimal solution is compared with the Scottish Antimicrobial Prescribing Group vancomycin guideline. [ABSTRACT FROM AUTHOR]

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]

Background: Patient‐centredness is considered an essential aspiration of a high‐quality health‐care system, and patient engagement is a critical precursor to patient‐centred care. Objectives: To engage patients, health‐care providers and stakeholders in identifying recommendations to address research and practice gaps that impact young African American breast cancer survivors. Methods: This paper reported an approach for research priority setting. This approach applies an engagement process (January‐September 2018) of using patient and stakeholder groups, patient storytelling workshops and a culminating storytelling conference in Wisconsin to generate relevant research topics and recommendations. Topics were prioritized using an iterative engagement process. Research priorities and recommendation were ranked over the conference by counting participants' anonymous votes. Results: One hundred attendees (43 patients/family members, 20 providers/researchers and 37 community members) participated in the conference. Five topics were identified as priorities. The results showed that three priority areas received the most votes, specifically community outreach and education, providing affordable health care and engaging in complementary care practice. Stakeholders also agreed it is critical to 'include youth in the conversation' when planning for cancer support and educational programmes for caregivers, friends and family members. Conclusion: Storytelling as a patient engagement approach can build trust in the patient‐research partnership, ensure that patients are meaningfully engaged throughout the process and capture the diversity of patient experiences and perspectives. [ABSTRACT FROM AUTHOR]

LINKED CONTENT: This article is linked to Malham et al papers. To view these articles, visit https://doi.org/10.1111/apt.17994 and https://doi.org/10.1111/apt.18012. [ABSTRACT FROM AUTHOR]

LINKED CONTENT: This article is linked to Malham et al papers. To view these articles, visit https://doi.org/10.1111/apt.17994 and https://doi.org/10.1111/apt.18026. [ABSTRACT FROM AUTHOR]

LINKED CONTENT: This article is linked to Caldera et al papers. To view these articles, visit https://doi.org/10.1111/apt.17454 and https://doi.org/10.1111/apt.17490 [ABSTRACT FROM AUTHOR]

LINKED CONTENT: This article is linked to Caldera et al papers. To view these articles, visit https://doi.org/10.1111/apt.17454 and https://doi.org/10.1111/apt.17519 [ABSTRACT FROM AUTHOR]

Copyright of Respirology Case Reports 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.)

LINKED CONTENT: This article is linked to Fitzpatrick et al papers. To view these articles, visit https://doi.org/10.1111/apt.18172 and https://doi.org/10.1111/apt.18267. [ABSTRACT FROM AUTHOR]

Thompson et al., 2023 (Generalized models for quantifying laterality using functional transcranial Doppler ultrasound. Human Brain Mapping, 44(1), 35–48) introduced generalised model‐based analysis methods for determining cerebral lateralisation from functional transcranial Doppler ultrasound (fTCD) data which substantially decreased the uncertainty of individual lateralisation estimates across several large adult samples. We aimed to assess the suitability of these methods for increasing precision in lateralisation estimates for child fTCD data. We applied these methods to adult fTCD data to establish the validity of two child‐friendly language and visuospatial tasks. We also applied the methods to fTCD data from 4‐ to 7‐year‐old children. For both samples, the laterality estimates from the complex generalised additive model (GAM) approach correlated strongly with the traditional methods while also decreasing individual standard errors compared to the popular period‐of‐interest averaging method. We recommend future research using fTCD with young children consider using GAMs to reduce the noise in their LI estimates. [ABSTRACT FROM AUTHOR]