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Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Introduction: In England, primary care networks (PCNs) offer opportunities to improve access to and sustainability of general practice through collaboration between groups of practices to provide care with a broader range of practitioner roles. However, there are concerns that these changes may undermine continuity of care. Our study investigates what the organisational shift to PCNs means for continuity of care. Methods: The paper uses thematic analysis of qualitative data from interviews with general practitioners and other healthcare professionals (HCPs, n = 33) in 19 practices in five PCNs, and their patients (n = 35). Three patient cohorts within each participating practice were recruited, based on anticipated higher or lower needs for continuity of care: patients over 65 years with polypharmacy, patients with anxiety or depression and 'working age' adults aged between 18 and 45 years. Findings: Patients and clinicians perceived changes to continuity in PCNs in our study. Larger‐scale care provision in PCNs required better care coordination and information‐sharing processes, aimed at improving care for 'vulnerable' patients in target groups. However, new working arrangements and ways of delivering care in PCNs undermine HCPs' ability to maintain continuity through ongoing relationships with patients. Patients experience this in terms of reduced availability of their preferred clinician, inefficiencies in care and unfamiliarity of new staff, roles and processes. Conclusions: New practitioners need to be effectively integrated to support effective team‐based care. However, for patients, especially those not deemed 'vulnerable', this may not be sufficient to counter the loss of relationship with their practice. Therefore, caution is required in relation to designating patients as in need of, or not in need of continuity. Rather, continuity for all patients could be maintained through a dynamic understanding of the need for it as fluctuating and situational and by supporting clinicians to provide follow‐up care. Patient and Public Involvement (PPI): A PPI group was recruited and consulted during the study for feedback on the study design, recruitment materials and interpretation of findings. [ABSTRACT FROM AUTHOR]

Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]

Background: This paper aims to explore the impact of recovery education on recovery knowledge, attitudes and the quality of life of students undertaking recovery education, contributing to the evidence base in relation to the impact of recovery education. It also explores the experiences of all stakeholders involved in the co‐facilitation, delivery and participation in recovery education. Setting and Participants: This study evaluates the experiences of stakeholders involved in the co‐facilitation, delivery and participation in recovery education across four recovery colleges in Ireland. Participants included students undertaking recovery education, peer educators, education facilitators, recovery college coordinators and practitioner/service providers. Discussion: Findings from the quantitative survey when compared with extant literature suggest that students had a good understanding of recovery education. The social aspect of empowerment for growth and wellbeing was identified through themes relating to co‐production and facilitating student learning. Support for equitable access to recovery education, including co‐production for both the public and staff, was identified as a challenge for the future. Conclusion: The findings from both the qualitative and quantitative components of the study show the positive impact of recovery education on stakeholders while acknowledging the need for ongoing support for people working in recovery education and the development of services. In particular, there was a high level of recovery knowledge found in students undertaking recovery education. Patient or Public Contribution: This study utilised a co‐created study design. From inception a steering group comprising stakeholders (peer educators, recovery education facilitators including past recovery college students and nonpeer staff involved in the co‐production of recovery education) directed the conduct of the evaluation. This steering group participated in an iterative process of information sharing, suggestions for evaluation process and language. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient‐centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding. Aim: Building on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire. Methods: Based on a participatory action research design and the patient engagement framework in the Strategy for Patient‐Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings. Results: This paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six‐step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines. Conclusion: This six‐step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. Patient or Public Contribution: All patient partners from the PriCARE programme were actively involved in the six‐step approach. They were also involved in the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Stakeholder engagement remains scarce in basic brain research. However, it can greatly improve the relevance of investigations and accelerate the translation of study findings to policy. The Lifebrain consortium investigated risk and protective factors influencing brain health using cognition, lifestyle and imaging data from European cohorts. Stakeholder activities of Lifebrain—organized in a separate work package—included organizing stakeholder events, investigating public perceptions of brain health and dissemination. Here, we describe the experiences of researchers and stakeholders regarding stakeholder engagement in the Lifebrain project. Methods: Stakeholder engagement in Lifebrain was evaluated through surveys among researchers and stakeholders and stakeholders' feedback at stakeholder events through evaluation forms. Survey data were analysed using a simple content analysis approach, and results from evaluation forms were summarized after reviewing the frequency of responses. Results: Consortium researchers and stakeholders experienced the engagement activities as meaningful and relevant. Researchers highlighted that it made the research and research processes more visible and contributed to new networks, optimized data collection on brain health perceptions and the production of papers and provided insights into stakeholder views. Stakeholders found research activities conducted in the stakeholder engagement work package to be within their field of interest and research results relevant to their work. Researchers identified barriers to stakeholder engagement, including lack of time, difficulties in identifying relevant stakeholders, and challenges in communicating complex scientific issues in lay language and maintaining relationships with stakeholders over time. Stakeholders identified barriers such as lack of budget, limited resources in their organization, time constraints and insufficient communication between researchers and stakeholders. Conclusion: Stakeholder engagement in basic brain research can greatly benefit researchers and stakeholders alike. Its success is conditional on dedicated human and financial resources, clear communication, transparent mutual expectations and clear roles and responsibilities. Public Contribution: Patient organizations, research networks, policymakers and members of the general public were involved in engagement and research activities throughout the project duration. [ABSTRACT FROM AUTHOR]

Background: As digital tools are increasingly used to support COVID‐19 contact tracing, the equity implications must be considered. As part of a study to understand the public's views of digital contact tracing tools developed for the national 'Test and Protect' programme in Scotland, we aimed to explore the views of groups often excluded from such discussions. This paper reports on their views about the potential for contact tracing to exacerbate inequalities. Methods: A qualitative study was carried out; interviews were conducted with key informants from organizations supporting people in marginalized situations, followed by interviews and focus groups with people recruited from these groups. Participants included, or represented, minority ethnic groups, asylum seekers and refugees and those experiencing multiple disadvantage including severe and enduring poverty. Results: A total of 42 people participated: 13 key informants and 29 members of the public. While public participants were supportive of contact tracing, key informants raised concerns. Both sets of participants spoke about how contact tracing, and its associated digital tools, might increase inequalities. Barriers included finances (inability to afford smartphones or the data to ensure access to the internet); language (digital tools were available only in English and required a degree of literacy, even for English speakers); and trust (many marginalized groups distrusted statutory organizations and there were concerns that data may be passed to other organizations). One strength was that NHS Scotland, the data guardian, is seen as a generally trustworthy organization. Poverty was recognized as a barrier to people's ability to self‐isolate. Some participants were concerned about giving contact details of individuals who might struggle to self‐isolate for financial reasons. Conclusions: The impact of contact tracing and associated digital tools on marginalized populations needs careful monitoring. This should include the contact tracing process and the ability of people to self‐isolate. Regular clear messaging from trusted groups and community members could help maintain trust and participation in the programme. Patient and Public Contribution: Our patient and public involvement coapplicant, L. L., was involved in all aspects of the study including coauthorship. Interim results were presented to our local Public and Patient Involvement and Engagement Group, who commented on interpretation and made suggestions about further recruitment. [ABSTRACT FROM AUTHOR]

Objectives: The global coronavirus disease 2019 (COVID‐19) pandemic has not been well controlled, and vaccination could be an effective way to prevent this pandemic. By accommodating attribute nonattendance (ANA) in a discrete choice experiment (DCE), this paper aimed to examine Chinese public preferences and willingness to pay (WTP) for COVID‐19 vaccine attributes, especially the influence of ANA on the estimated results. Methods: A DCE was designed with four attributes: effectiveness, protection period, adverse reactions and price. A random parameter logit model with an error component (RPL‐EC) was used to analyse the heterogeneity of respondents' preferences for COVID‐19 vaccine attributes. Two equality constraint latent class (ECLC) models were used to consider the influence of ANA on the estimated results in which the ECLC‐homogeneity model considered only ANA and the ECLC‐heterogeneity model considered both ANA and preference heterogeneity. Results: Data from 1,576 samples were included in the analyses. Effectiveness had the highest relative importance, followed by adverse reactions and protection period, which were determined by the attributes and levels presented in this study. The ECLC‐heterogeneity model improved the goodness of fit of the model and obtained a lower probability of ANA. In the ECLC‐heterogeneity model, only a small number of respondents (29.09%) considered all attributes, and price was the most easily ignored attribute (64.23%). Compared with the RPL‐EC model, the ECLC‐homogeneity model obtained lower WTPs for COVID‐19 vaccine attributes, and the ECLC‐heterogeneity model obtained mixed WTP results. In the ECLC‐heterogeneity model, preference group 1 obtained higher WTPs, and preference groups 2 and 3 obtained lower WTPs. Conclusions: The RPL‐EC, ECLC‐homogeneity and ECLC‐heterogeneity models obtained inconsistent WTPs for COVID‐19 vaccine attributes. The study found that the results of the ECLC‐heterogeneity model considering both ANA and preference heterogeneity may be more plausible because ANA and low preference may be confused in the ECLC‐homogeneity model and the RPL‐EC model. The results showed that the probability of ANA was still high in the ECLC‐heterogeneity model, although it was lower than that in the ECLC‐homogeneity model. Therefore, in future research on DCE (such as the field of vaccines), ANA should be considered as an essential issue. Public Contribution: Chinese adults from 31 provinces in mainland China participated in the study. All participants completed the COVID‐19 vaccine choice questions generated through the DCE design. [ABSTRACT FROM AUTHOR]

Background: Patient satisfaction has been seen as a key criterion when evaluating hospitals and is one of the main focuses of the current health‐care reform in China. This paper aimed to explore patient‐ and hospital‐level factors associated with inpatient satisfaction, which can provide policy implications for the evaluation and development of a patient‐oriented health‐care system. Methods: The paper analyses data from the 2017 China National Patient Survey which includes 20 300 inpatients from 131 tertiary hospitals across 31 provinces. Descriptive analysis and multivariable logistic regressions are conducted to identify key factors related to satisfaction. Results: Patient sociodemographic characteristics, including gender, age, income and insurance type, are found to be strongly associated with their satisfaction of inpatient experience. In terms of institutional characteristics, hospital type, size, staffing and financial performance are also significantly correlated with inpatient satisfaction. Patients are more satisfied with specialist hospitals and large hospitals measured by the number of beds and surgeries. Hospitals with higher nurse‐to‐bed ratio also receive more satisfaction. The financial performance of hospitals, however, is negatively associated with satisfaction. Conclusion: Patient satisfaction contains unique information on service quality and thus should be incorporated into the matrix of hospital evaluation. Meanwhile, differences in patient composition must be adjusted to make fair comparisons across hospitals. Moreover, future reform needs to put greater efforts in the design of comprehensive public insurance scheme, efficient hospital structure and an overall well‐functioning health‐care delivery system in order to better serve patients in China. [ABSTRACT FROM AUTHOR]

The importance of support to breastfeeding success is well established, as are the difficulties many mothers face in accessing the support they need. With the majority of UK mothers now accessing social media for support, Breastfeeding Support Facebook (BSF) groups have increased exponentially. BSF groups vary in type (local or national/international) and in moderation—overseen by breastfeeding mothers and by midwives or trained lactation specialists. Some groups aimed at supporting mothers in a specific geographical area also have associated face‐to‐face groups, facilitated as either professional or peer support. Little is currently known about these specific local groups, their prevalence, impact or value to mothers. This paper examines mothers' experiences of using local BSF groups and why they value them as part of a larger study exploring the impact of midwife moderation on these groups. An online survey consisting of open and closed questions was completed by 2028 mothers. Findings identified that local BSF groups are widely used and highly valued for their connection with local face‐to‐face services and other mothers. They offer access to expertise and shared experience in a format mothers find convenient and timely, improving confidence and self‐efficacy. Local BSF groups enable the formation of support networks and development of breastfeeding knowledge that mothers credit with increased well‐being, motivation and breastfeeding duration. As such, they have the potential to add value to local face‐to‐face services and improve breastfeeding experiences and knowledge in communities. The findings have important implications to support the development of integrated online interventions to improve public health. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

Objective: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. Methods: A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results: 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution: A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up. [ABSTRACT FROM AUTHOR]

Background: Meaningful and generalizable research depends on patients' willingness to participate. Studies often fail to reach satisfactory representativeness. Objective: This paper aims to investigate reasons for not participating in research among young adult patients with psychiatric illness. Method: A quantitative cross‐sectional study was performed based on questionnaires reported on by 51 psychiatric patients (14 males, 35 females and two unspecified) who had previously declined participation in an ongoing research project. Thereafter, a qualitative interview with subsequent content analysis was conducted with ten additional patients (five males, five females). Results: The questionnaires indicate being 'too tired/too sick to participate' as the most common barrier. Lack of time and fear of needles were other common barriers. Lack of trust or belief in the value of research was less inhibitive. In the interviews, disabling psychiatric symptoms were confirmed as the main reason for not participating. Several potential ways to increase participation were identified, such as simplification of procedures and information as well as providing rewards and feedback, and building relationships before asking. Conclusion: This study is unusual as it focuses on the group of young people attending psychiatry outpatient clinics we know very little about – those who do not partake in research. Our results indicate that fatigue and sickness reduce research participation and identify factors that may facilitate enrolment of this important group. [ABSTRACT FROM AUTHOR]

Aim: To investigate the efficacy of waiting room media for reducing anxiety and increasing satisfaction at a paediatric rehabilitation hospital.Method: In this clustered, parallel, randomized controlled trial, 310 young people with disabilities (age range 5-19y) and their parents attending outpatient clinics were assigned to interactive media (n=113), a silent nature video (n=97), or media-free comparison (n=100) groups. Young person and parent anxiety was reported using the State-Trait Anxiety Inventory (STAI) on arrival and after 10 minutes in the waiting space. Questionnaires measured young person, parent, and staff satisfaction.Results: Young people exposed to interactive media reported a postexposure state anxiety that was 1.1 raw points (2.7 standardized points) lower on the STAI than the comparison group (95% confidence interval [CI] -1.9 to -0.22). There was no difference in postexposure state anxiety between the passive media and comparison groups (95% CI -0.64 to 1.1). Parents' state anxiety did not differ between conditions, but interactive media were associated with greater satisfaction (p=0.009). Of 120 staff, 119 reported that interactive media improved the clinic experience for families.Interpretation: Interactive media designed for accessible, hands-free play mitigate waiting anxiety and increases satisfaction. This paper provides evidence to guide design and decision-making around the use of interactive media in health care spaces.What This Paper Adds: Interactive media reduced preclinic waiting anxiety for young people with disabilities. Interactive media were accessible to young people with a range of mobility. Interactive media increased parental and staff satisfaction in the clinic. Guidelines for the design of hands-free, inclusive interactive media for health care facilities are presented. [ABSTRACT FROM AUTHOR]

Aim: To evaluate the feasibility, acceptability, and preliminary effects of Participation and Environment Measure-Plus (PEM+) 2.0, an optimized version of a web-based, participation-focused, care-planning tool.Method: Twenty-two caregivers of children aged 0 to 5 years receiving rehabilitation services, who reported dissatisfaction with their child's participation, had internet access, and could read and write English, were recruited for this 2-week, single-arm pilot trial. Feasibility was assessed through retention rates, completion time, percentage of care plans developed relative to caregiver reported need, and independent completion of PEM+ 2.0. Acceptability was assessed by the Usefulness, Satisfaction, and Ease of Use Questionnaire. Preliminary effects were assessed by two items on caregiver reported impact of PEM+ 2.0 on confidence for addressing their child's participation.Results: Eighteen caregivers completed at least one iteration of PEM+ 2.0; of those, 17 were female and 15 were 30 to 39 years old. The median completion time was 12.99 minutes (quartile 1, 6.30; quartile 3, 17.33), mean care plan creation relative to need was 50% (standard deviation [SD] 31), and 17 completed PEM+ 2.0 independently. Mean acceptability scores were 3.80 to 4.97 (SD 1.25-1.97) and mean preliminary effect scores were 4.61 to 4.72 (SD 1.85-2.24), out of 7.0. There were strong and significant positive associations between two of the three estimates of PEM+ 2.0 acceptability and caregiver confidence (r=0.577-0.793, p<0.01).Interpretation: Electronic health tools have the potential for facilitating family-centered care in pediatric rehabilitation. PEM+ 2.0 is a feasible tool within pediatric rehabilitation and has potential to be an acceptable tool for improving caregiver confidence for promoting their child's participation in valued activities.What This Paper Adds: Participation and Environment Measure-Plus (PEM+) 2.0 is feasible for collaboratively engaging caregivers in the care-planning process. Caregivers perceived PEM+ 2.0 as helpful for thinking about their child's participation and what can be done to improve it. Feasibility and acceptability results will inform PEM+ 2.0 optimizations. [ABSTRACT FROM AUTHOR]

Aim: To describe leisure participation in adolescents with congenital heart defects (CHD) and identify factors associated with intensity of participation.Method: Eighty adolescents with CHD were recruited (39 males, 41 females; mean age [SD] 15y 8mo [1y 8mo] range 11y 5mo-19y 11mo) of whom 78 completed the Children's Assessment of Participation and Enjoyment (CAPE) outcome measure of leisure participation. The measure has five subscales: recreational, active-physical, social, skill-based, and self-improvement. Associations between the CAPE and age, sex, and development were examined. Motor ability (Movement Assessment Battery for Children, Second Edition), cognition (Leiter International Performance Scale-Revised), behavior (Strengths and Difficulties Questionnaire), and motivation (Dimensions of Mastery Questionnaire) were assessed.Results: Participants exhibited impaired motor (43.5%), behavioral (23.7%), and cognitive (29.9%) development. The most intense participation was in social (mean [SD] 3.3 [0.99]) and recreational (2.9 [0.80]) activity types on the CAPE. Male sex (p<0.05) and younger age were associated with greater physical activity (<15y: 1.87; ≥15y: 1.31, p<0.05). Greater engagement in social activities was related to better cognition (r=0.28, p<0.05), higher motor function (r=0.30-0.36, p<0.01), and fewer behavioral difficulties (r=-0.32 to -0.47, p<0.01). Cognitive ability (r=0.27, p<0.05), dexterity and aiming/catching (r=0.27-0.33, p<0.05), and behavior problems (r=0.38-0.49, p=0.001) were correlated with physical activity participation. Persistence in tasks, an aspect of motivation, correlated with physical (r=0.45, p<0.001) and social activity involvement (r=0.28, p<0.05).Interpretation: Ongoing developmental impairments in adolescents with CHD are associated with decreased active-physical and social engagement, putting them at risk of poor physical and mental health. Health promotion strategies should be considered.What This Paper Adds: Adolescents with congenital heart defects (CHD) have limited engagement in active-physical leisure activities. Cognitive, motor, and behavioral impairments are associated with decreased participation in leisure in children with CHD. Female sex and older age are associated with less engagement in leisure. Mastery motivation correlates with participation, suggesting an avenue for intervention. [ABSTRACT FROM AUTHOR]

Aim: To explore how patients with cerebral palsy (CP) perceive their gait and evaluate associations between subjective gait perception and: objective gait parameters, endurance, pain, and fatigue.Method: Sixty-two patients (21 females and 41 males; mean [SD] age 20y [5y 1mo], range 15-29y) performed a clinical gait analysis. Self-selected walking speed, Gait Profile Score, and Gait Variable Score were calculated. Subjective gait perception was assessed with a visual analogue scale using the question: 'On a scale from 0 (worst) to 10 (optimal), how would you describe your walking today?'. A 6-minute walk test (6MWT) measured endurance; the 36-Item Short Form Health Survey (SF-36) evaluated quality of life. T-tests, Pearson correlations, and univariate and multiple linear regression models were used to compare and find associations between the data.Results: Overall mean (SD) subjective gait perception was 7.5 (1.8) and was significantly higher for patients in Gross Motor Function Classification System (GMFCS) level I (7.9 [1.5]) than for patients in GMFCS levels II and III (5.9 [2.0]). Positive correlations were found between subjective gait perception and gait scores, walking speed, 6MWT distance, and SF-36 score. Only walking speed was a significant predictor of subjective gait perception.Interpretation: Subjective gait perception was influenced by GMFCS level and linked partially with the walking speed. The gait quality did not explain subjective gait perception. It is important to combine subjective and objective gait scores to develop personalized therapeutic goals.What This Paper Adds: Subjective gait perception is influenced by the physical impairment levels of patients with cerebral palsy. Subjective gait perception and objective gait scores are associated. Walking speed is the only predictor of gait perception. [ABSTRACT FROM AUTHOR]

This paper aimed to examine the effect of breastfeeding on longitudinal patterns of common infections up to 2 years and respiratory symptoms up to 8 years. To assess the incidence and reoccurrence of infections and allergic symptoms in the first years of life among 1,603 children from the EDEN mother–child cohort, distinct longitudinal patterns of infectious diseases as well as skin rash and respiratory symptoms were identified by group‐based trajectory modelling. To characterize infections, we considered the parent‐reported number of cold/nasopharyngitis and diarrhoea from birth to 12 months and otitis and bronchitis/bronchiolitis from birth to 2 years. To characterize allergy‐related symptoms, we considered the parent‐reported occurrence of wheezing and skin rash from 8 months to 8 years and asthma from 2 to 8 years. Then associations between breastfeeding and these longitudinal patterns were assessed through adjusted multinomial logistic regression. Compared with never‐breastfed infants, ever‐breastfed infants were at a lower risk of diarrhoea events in early infancy as well as infrequent events of bronchitis/bronchiolitis throughout infancy. Only predominant breastfeeding duration was related to frequent events of bronchitis/bronchiolitis and infrequent events of otitis. We found no significant protective effect of breastfeeding on longitudinal patterns of cold/nasopharyngitis, skin rash, or respiratory symptoms. For an infant population with a short breastfeeding duration, on average, our study confirmed a protective effect of breastfeeding on diarrhoea events in early infancy, infrequent bronchitis/bronchiolitis and, to a lesser extent, infrequent otitis events up to 2 years but not on other infections, skin rash, or respiratory symptoms4. In an infant population with a short breastfeeding duration and using longitudinal patterns of infection, skin rash and respiratory symptoms, on average, our study confirmed a protective effect of breastfeeding on diarrhea events in early infancy, infrequent bronchitis/bronchiolitis and, to a lesser extent,infrequent otitis events up to 2 years but not on cold/ nasopharyngitis, skin rash or respiratory symptoms. [ABSTRACT FROM AUTHOR]

Background and context: Breastfeeding peer support is valued by women, but UK trials have not demonstrated efficacy. The ABA feasibility trial offered proactive peer support underpinned by behaviour change theory and an assets‐based approach to women having their first baby, regardless of feeding intention. This paper explores women's and infant feeding helpers' (IFHs) views of the different components of the ABA intervention. Setting and participants: Trained IFHs offered 50 women an antenatal meeting to discuss infant feeding and identify community assets in two English sites—one with a paid peer support service and the other volunteer‐led. Postnatally, daily contact was offered for the first 2 weeks, followed by less frequent contact until 5 months. Methods: Interviews with 21 women and focus groups/interviews with 13 IFHs were analysed using thematic and framework methods. Results: Five themes are reported highlighting that women talked positively about the antenatal meeting, mapping their network of support, receiving proactive contact from their IFH, keeping in touch using text messaging and access to local groups. The face‐to‐face antenatal visit facilitated regular text‐based communication both in pregnancy and in the early weeks after birth. Volunteer IFHs were supportive of and enthusiastic about the intervention, whereas some of the paid IFHs disliked some intervention components and struggled with the distances to travel to participants. Conclusions: This proactive community assets‐based approach with a woman‐centred focus was acceptable to women and IFHs and is a promising intervention warranting further research as to its effect on infant feeding outcomes. [ABSTRACT FROM AUTHOR]

Aim: To determine whether epilepsy surgery improved health-related quality of life (HRQoL) and whether seizure freedom after surgery mediated the improvement in HRQoL.Method: This multicenter cohort study compared HRQoL after epilepsy surgery to pharmacological management in children with drug-resistant epilepsy (DRE). HRQoL was measured using the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire at baseline and 1-year follow-up. The mediator between treatment type and HRQoL was seizure freedom.Results: Two hundred and thirty-seven patients were recruited (surgery group: n=147 [92 males, 45 females]; pharmacological group: n=90 [53 males, 37 females]). Mean age at seizure onset was 6 years (SD 4y 4mo) in the surgical group and 6 years 1 month (SD 4y) in the pharmacological group. The odds ratio of seizure freedom was higher for the surgery versus pharmacological group (β=4.24 [95% confidence interval {CI}: 2.26-7.93], p<0.001). Surgery had no direct effect on total QOLCE score at 1-year (β=0.24 [95% CI -2.04 to 2.51], p=0.839) compared to pharmacological management, but had an indirect effect on total QOLCE that was mediated by seizure freedom (β=0.92 [95% CI 0.19-1.65], p=0.013), adjusting for baseline total QOLCE score. Surgery had a direct effect on improving social function (p=0.043), and an indirect effect on improving physical function (p=0.016), cognition (p=0.042), social function (p=0.012) and behavior (p=0.032), mediated by seizure freedom.Interpretation: Greater seizure freedom achieved through epilepsy surgery mediated the improvement in HRQoL compared to pharmacological management in children with DRE.What This Paper Adds: Seizure freedom is higher after pediatric epilepsy surgery compared to pharmacologically managed epilepsy. Surgery indirectly improves health-related quality of life (HRQoL) mediated by seizure freedom compared to pharmacological management. Surgery has a direct effect on improving social function relative to pharmacological management. Baseline HRQoL was an important predictor of HRQoL after treatment. [ABSTRACT FROM AUTHOR]

Aim: To describe health-related quality of life (HRQoL), pain, fatigue, and other health variables in young adults with cerebral palsy (CP), and to explore associations with the Gross Motor Function Classification System - Expanded and Revised (GMFCS-ER) and physical activity.Method: This was a cross-sectional study of 61 young adults at a mean age of 21 years 2 months (standard deviation 8mo, range 20-22y) with CP, from a geographically defined area. Data collection included: Short Form 36 version 2 for HRQoL, Brief Pain Inventory - Short Form, Fatigue Severity Scale, level of physical activity, medical history, and physical examination.Results: Overall HRQoL equalled that of population norms; however self-reported physical health was lower in GMFCS-ER levels III to V compared to GMFCS-ER levels I to II. Self-reported mental health was, inversely, lower in GMFCS-ER levels I to II compared to GMFCS-ER levels III to V. Pain prevalence was 49%, and pain was present across all GMFCS-ER levels. Fatigue, as well as sleep problems, had 41% prevalence, with fatigue severity decreasing with increasing level of physical activity.Interpretation: General HRQoL in young adults with CP was comparable to population norms. Pain and fatigue are important to address in high motor-functioning individuals also. Physical activity could be a possible protective factor against fatigue.What This Paper Adds: Health-related quality of life in young adults with cerebral palsy (CP) was comparable to population norms. Pain, fatigue, and sleep problems occurred at all Gross Motor Function Classification System levels. There is a possible protective effect of physical activity on fatigue. [ABSTRACT FROM AUTHOR]

Aim: To determine factors associated with acquisition of a sitting position in patients with spinal muscular atrophy type 1 (SMA1) treated with nusinersen.Method: Using data from the registry of patients with SMA1 treated with nusinersen, we compared the subgroups of sitters and non-sitters after 14 months of therapy as a function of baseline level, SMN2 copy number, age at treatment initiation, and improvement at 2 and 6 months post-treatment initiation. We used Hammersmith Infant Neurological Examination, Section 2 (HINE-2) and Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders for motor evaluation.Results: Fifty children (22 females, 28 males), mean age 22 months (SD 20.7; range 2.5-102.8mo) were treated. Data on sitting position acquisition were collected for 47 patients at month 14. Fifteen patients were able to sit unassisted; 11 of 15 had a baseline HINE-2 score of at least 2 points and 11 of 14 had an improvement over baseline of at least 2 points at month 6. Patients who improved by 2 or more points at month 6 were three times more likely to be sitters at month 14 than those who did not.Interpretation: High baseline motor function and improvement in HINE-2 score after 6 months of treatment are associated with the probability of acquiring a sitting position in patients with SMA1 treated with nusinersen.What This Paper Adds: Fifteen of 47 patients with spinal muscular atrophy could sit unaided 14 months after treatment with nusinersen. The number of SMN2 copies were not predictive of acquisition of a sitting position. Baseline condition and clinical response after 6 months of treatment were most predictive of sitting position acquisition. [ABSTRACT FROM AUTHOR]

Aim: To evaluate whether spasticity measures are related to pain in adults with cerebral palsy (CP).Method: This cross-sectional study recruited individuals aged 16 to 89 years with a diagnosis of CP. Participants completed the Penn Spasm Frequency Scale (PSFS), Brief Pain Inventory (BPI), and PROMIS Pain Interference measures. The Modified Ashworth Scale (MAS) and Tardieu spasticity angles of six joints were rated and summed to composite MAS and Tardieu scores for each participant. Associations between spasticity and pain measures were evaluated.Results: Forty-seven participants (27 females, 20 males) with a mean age of 35 years 7 months (range 18-77y) spanning all Gross Motor Function Classification System (GMFCS) levels were included. Twenty-six participants reported their average pain level on BPI as greater than 0 over the past week (median pain level 4.0). Median PSFS was 1.0 (range 0.0-1.0) and this correlated with average BPI and Pain Interference T scores (median 40.7; ρ=0.33 and ρ=0.31 respectively [both p=0.01]). When adjusted for pain medication use and age, MAS correlated with BPI (ρ=0.30; p=0.04). Other pain and spasticity measures, or GMFCS level, were not significantly related with pain interference or BPI rating. Age was weakly associated with BPI (slope=0.10; p<0.01).Interpretation: PROMIS Pain Interference was lower than population-based norms. Patient-rated spasm frequency demonstrated better association with pain levels and interference than physician-rated MAS and Tardieu.What This Paper Adds: Pain was not associated with Gross Motor Function Classification System level. Pain increased with age, as anticipated. Self-reported spasm scores were associated with increased pain in contrast to clinical examination scales. Adjusted, summed spasticity on the Modified Ashworth Scale was associated with pain scores on the Brief Pain Inventory. Although pain is experienced by adults with cerebral palsy, pain did not interfere with activities. [ABSTRACT FROM AUTHOR]

Aim: This study examined children's health care service use, mothers' workforce participation, and mothers' community engagement based on children's risk of developmental delay.Method: We used data from the All Our Families study, a prospective pregnancy cohort. Ages and Stages Questionnaire (ASQ) scores at year 2 indicated risk of developmental delay. To investigate the impact of risk of developmental delay when children were not diagnosed, a sensitivity analysis excluded reports of neurodevelopmental disorder (NDD) diagnosis at year 3. Outcomes were maternal reports of children's health and allied health visits (and estimated costs), and maternal workforce participation and community engagement from year 2 to 3.Results: Among 1314 mother-child dyads, 209 (16%) children were classified as being at risk of developmental delay by the ASQ, and 42 (3%) had a reported diagnosis of NDD. Risk of developmental delay was related to increased use of allied health care services (incidence risk ratio 5.04 [year 3]; 95% confidence interval 2.49-10.2) and health visits (incidence risk ratio 1.33 [year 3]; 95% confidence interval 1.14-1.54). The average expected allied health costs were greater for children at risk versus not at risk of developmental delay. However, when excluding children with reported diagnoses of an NDD from this analysis, increased service use and costs in the remaining at-risk population were not observed. Community engagement and workplace participation among families did not differ on the basis of risk of developmental delay.Interpretation: These results suggest increased health care service use by families of children at risk of developmental delay is driven by those receiving a diagnosis of an NDD in the subsequent year.What This Paper Adds: Early developmental delay risk was related to health care service use and costs. Diagnosis of neurodevelopmental disorder drove increased health care service use and costs. Early developmental delay risk did not relate to parental workforce participation. Early developmental delay risk did not relate to community engagement participation. [ABSTRACT FROM AUTHOR]

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]

Aim: To evaluate the psychometric properties of the Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q) in paediatric neurodevelopment clinics.Method: Participants were 181 children (aged 6-18y) attending paediatric services in Scotland, divided into three age groups according to previous CAIDS-Q standardization cut-off scores. Fifty-four children (37 males, 17 females; mean age 117mo [SD 29.9mo]) met the criteria for intellectual disability and 127 did not (88 males, 39 females; mean age 120.1mo [SD 32.7mo]). A number of psychometric properties of the CAIDS-Q were evaluated, including test-retest and interrater reliability, convergent validity, sensitivity, specificity, and positive and negative predictive values based on existing cut-off scores.Results: Significant positive relationships were found for all three age groups between CAIDS-Q scores and measures of intellectual and adaptive functioning. Test-retest reliability ranged from 'moderate' to 'almost perfect', whereas interrater reliability ranged from 'fair' to 'almost perfect'. Sensitivity and positive predictive value were 100% for all groups and specificity was between 83% and 94%, depending on age. Negative predictive values ranged from 75% to 91%.Interpretation: The CAIDS-Q appears to show psychometric properties that support its use as a screen for intellectual disability in paediatric neurodevelopmental settings.What This Paper Adds: The Child and Adolescent Intellectual Disability Screening Questionnaire showed good psychometric properties. It identified all participating children who met the criteria for intellectual disability. Between 83% and 94% of children without intellectual disability were also correctly identified. [ABSTRACT FROM AUTHOR]

Aim: This case-control study examined the long-term consequences of surgical correction for ventricular septal defect (VSD; the most common congenital heart defect) in infancy. It assessed children who had undergone VSD surgery and the factors related to maternal conditions, surgery, and hospital stay.Method: Thirty-nine children (23 females, 16 males; age range 6y 1mo-9y 7mo [mean 7y 4mo, SD 1y]) with repaired isolated, non-syndromic, non-genetic VSD were compared with 39 typically developing children (22 females, 17 males; age range 6y-9y 2mo [mean 7y 3mo, SD 10mo]). The children completed behavioural tests of neurodevelopment and a quality of life (QoL) questionnaire. Mothers rated children's emotional/behavioural symptoms and QoL. Measures of maternal parenting behaviour and psychopathology were treated as moderators.Results: Affected children showed reduced language skills (p=0.002) unless mothers reported high parenting behaviour subscale scores (p=0.04). Children's anxiety symptoms were elevated when mothers had anxiety symptoms (p=0.01). Longer hospital stay was associated with lower intelligence (p=0.003) and psychomotor scores (p=0.006). Longer scars predicted elevated child anxiety (p=0.008), and age at surgery and QoL were inversely related (p=0.01).Interpretation: Impairments could be mitigated if VSD repair was performed early in life with a relatively small scar and uncomplicated hospital stay. This outcome depends on maternal parenting behaviour and anxiety symptoms.What This Paper Adds: Children's cognitive and psychomotor development after surgical ventricular septal defect repair was unimpaired. Children showed no mental health restrictions when their mothers reported few anxiety symptoms themselves. Language impairments might be preventable by pro-active parenting. The outcome also depends on variables related to surgery and hospital stay. [ABSTRACT FROM AUTHOR]

Aim: To identify characteristics of young children with cerebral palsy (CP), and intrinsic and extrinsic factors, that may be associated with parental perceptions regarding family-centred health care services.Method: We conducted a cross-sectional study, drawing our sample from the Canadian Cerebral Palsy Registry (CCPR). Parents rated the extent of family-centred care provided by their child's health care teams using the 56-item Measures of Process of Care (MPOC) questionnaire. Environmental and CP phenotypic variables were extracted from the CCPR for group comparisons. Low and high MPOC-56 raters were also compared.Results: Valid responses were obtained from 282 families (90%). All MPOC-56 subscales were highly rated (median ≥6.0), indicating satisfaction with health care services, with the exception of the Providing General Information subscale (median 4.8, interquartile range 3.2-6.0). Parents from Nova Scotia rated all subscales significantly higher than parents from other regions. CP subtype and severity were not significantly associated with MPOC-56 subscale scores. Higher socio-economic status was associated with lower MPOC-56 subscale scores. Higher paternal educational attainment and household income were significantly associated with lower scores on the Providing General Information and Providing Specific Information about the Child subscales respectively.Interpretation: Participants affirmed the provision of family-centred services from Canadian pediatric rehabilitation centres. Sociodemographic factors were associated with parental perceptions of family-centred services.What This Paper Adds: Sociodemographic factors were associated with parental perceptions of family-centred care. Factors intrinsic to the child's cerebral palsy were not associated with parental perceptions. [ABSTRACT FROM AUTHOR]

Aim: To evaluate neurodevelopmental difficulties in children with idiopathic clubfoot.Method: A cross-sectional study of 106 children (29 females, 77 males; aged 8-10y) with idiopathic clubfoot and 109 age-, sex-, and residential area-parallelized children from the general population. Neurodevelopmental difficulties were assessed using the parent-report Five to Fifteen (FTF) questionnaire. Group differences were analysed for FTF domains, subdomains, and items. The 90th centile cut-off of the general population on FTF and the parent-based disease-specific instrument (DSI) were used to evaluate clinical relevance of neurodevelopmental symptoms in idiopathic clubfoot.Results: Modest group differences were found for several FTF domains (motor skills, perception, and language) and subdomains (gross and fine motor skills, relation in space, comprehensive and expressive language skills). Thirty-one per cent of the children with idiopathic clubfoot scored in the clinically significant range on 2 or more FTF domains. DSI scores were lower in this subgroup.Interpretation: Findings indicate a moderate and selective increase of neurodevelopmental difficulties in children with idiopathic clubfoot as a whole, especially in the areas of motor skills, perception, and language. Idiopathic clubfoot with marked neurodevelopmental symptoms are associated with less satisfaction of the clubfoot treatment. Our results recommend awareness of neurodevelopmental difficulties in the assessment and treatment of idiopathic clubfoot.What This Paper Adds: A substantial minority of children with idiopathic clubfoot show neurodevelopmental difficulties. Children with idiopathic clubfoot might present additional difficulties in motor skills, perception, and language. Children with idiopathic clubfoot and marked neurodevelopmental symptoms show poorer parent-reported clubfoot treatment satisfaction. Neurodevelopmental difficulties should be considered in clinical practice of idiopathic clubfoot. [ABSTRACT FROM AUTHOR]

Aim: To develop a patient-reported outcome measure that comprehensively captures the health-related priorities of children with Duchenne muscular dystrophy (DMD).Method: Children with DMD and their parents completed the iteratively revised versions of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), followed by a cognitive interview to develop a pilot version of a new measure. Multidisciplinary health care professionals completed an item-by-item analysis of the measure and a 14-item sensibility questionnaire. Minimum content validity ratio for each item of the new measure and the mean score (0-7) for the items of the sensibility questionnaire were calculated.Results: The CPCHILD underwent changes over 19 interviews with children and their parents, resulting in the pilot Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD). The content validity ratio of each MDCHILD item ranged from 0.85 to 1 based on health care professionals' ratings. The mean score exceeded the threshold of four for all items of the sensibility questionnaire. Based on child, parent, and health care professional recommendations, 16 items were added, six eliminated, and 15 items modified from the original CPCHILD. The MDCHILD consists of 47 items over seven domains.Interpretation: The MDCHILD met all sensibility criteria by children with DMD, their parents, and health care professionals, and is ready for psychometric evaluation.What This Paper Adds: The Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD) is a new patient-reported outcome measure for Duchenne muscular dystrophy (DMD). The Priority Framework of Outcomes underpins the content for the MDCHILD. The MDCHILD incorporates the health-related priorities of males with DMD and their parents. The MDCHILD was deemed sensible by children, their parents, and health care professionals. [ABSTRACT FROM AUTHOR]

Background: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan‐European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. Objective: To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. Setting and participants: Consultations took place at four divergent sites across Europe, involving twenty‐five people with dementia from nine European countries. Methods: The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. Results: The results suggested that people with dementia wish to participate in interventions that enhance their well‐being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. Discussion and conclusions: Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement. [ABSTRACT FROM AUTHOR]

Aim: To analyse the health care usage of individuals with cerebral palsy (CP) as a function of age and ambulatory status.Method: In total, 970 self-administered questionnaires relating to health care usage were sent, via a clinical network of professionals and institutions, to children and adults with CP in Brittany, France. Frequency of use of different aspects of health care were analysed as a function of age and ambulatory status. Multivariate logistic regression evaluated differences in the frequency of each health care type with age; the transition from childhood to adulthood was specifically analysed.Results: The response rate was 53% (282 adults, 230 children). Use of medication (particularly psychotropic and analgesic) increased with age, while physical-types of health care (rehabilitation, physical medicine and rehabilitation follow-up, and equipment) decreased with age, independently of ambulatory status. Use of other treatments, such as botulinum toxin injections, was not influenced by age. The provision of rehabilitation was particularly affected by the period of transition.Interpretation: Although health care needs change naturally in adulthood, the large decrease in usage of specific types of rehabilitation after the transition to adulthood suggested individuals had difficulty accessing this type of health care after childhood. These results provide objectives for the development of patient-centred, transitional consultations, and longitudinal studies.What This Paper Adds: Use of medication, particularly psychotropic and analgesic drugs, increased with age in individuals with cerebral palsy. Use of orthoses, physical medicine and rehabilitation physician follow-up, and rehabilitation decreased with age. Transition from childhood to adulthood involved significant changes in health care usage. [ABSTRACT FROM AUTHOR]

Aim: To investigate the responsiveness of the ACTIVLIM-CP questionnaire after two evidence-based interventions for children with cerebral palsy (CP).Method: Seventy-five children with CP either participated in an intensive motor-skill learning intervention (hand-arm bimanual intensive therapy including lower extremities [HABIT-ILE], n=47) or received botulinum neurotoxin-A (BoNT-A) injection(s) into lower extremities combined with conventional physical therapy (n=28). All children were assessed three times: at baseline (T0 ; before HABIT-ILE/the day of BoNT-A injection), at T1 (last day of HABIT-ILE/6wks after BoNT-A injection), and at follow-up (T2 ; 3-4mo after the beginning of intervention). Parents completed ACTIVLIM-CP and three other activity questionnaires. Responsiveness was analysed using group (based on intervention), subgroup (based on gross motor function level), and individual approaches.Results: For the HABIT-ILE group, significant improvements in ACTIVLIM-CP were observed for the T0 -T1 period (p<0.001) but not for the T1 -T2 period. No significant changes were found in the BoNT-A group during assessments (p=0.84). In the subgroup analysis for the HABIT-ILE group (T0 -T1 ), greater changes were demonstrated for children in Gross Motor Function Classification System levels III and IV (p<0.001, effect size=1.36). The individual approach was congruent with the group approach.Interpretation: ACTIVLIM-CP demonstrated high responsiveness after HABIT-ILE, showing that this scale may be used to investigate global activity performance in clinical trials focusing on improving daily life activities.What This Paper Adds: Good responsiveness of ACTIVLIM-CP questionnaire during intensive motor-skill learning intervention. Higher responsiveness for children in Gross Motor Function Classification System (GMFCS) levels III and IV versus I and II after intensive intervention. ACTIVLIM-CP is useful to identify children improving their performance after botulinum neurotoxin-A injection. [ABSTRACT FROM AUTHOR]

The aim of this paper is to assess the effectiveness of controlled interventions on reducing employees' burnout. Peer-reviewed published papers included in online databases, as well as papers identified in previous reviews, were considered for selection into the meta-analysis. Keywords entered were burnout and intervention, exhaustion and intervention, cynicism and intervention, and depersonalization and intervention. Inclusion criteria for the studies were (1) to include a burnout measure as a primary or a secondary outcome; (2) to include a comparison control group; and (3) available/sufficient data to calculate the d Cohen effect sizes. Using a random-effects model, we found small overall effect sizes for general level of burnout ( d = .22, p < .05, k = 13, overall N control = 741, overall N intervention = 747) and exhaustion ( d = .17, p < .01, k = 34, overall N control = 1,120, overall N intervention = 1,215), and statistically not significant effects for depersonalization ( d = .04, p > .05, k = 31, overall N control = 895, overall N intervention = 888) and personal accomplishment ( d = −.02, p > .05, k = 29, overall N control = 806, overall N intervention = 817). Similar effects were also found at follow-up, suggesting modest but lasting effects of interventions in reducing burnout. Yet, new more tailored strategies to reduce burnout are needed to improve the effects of the interventions. Practitioner points Cognitive-behavioural interventions and interventions based on relaxation techniques are effective only for reducing emotional exhaustion., New types of interventions are needed, to address depersonalization and personal accomplishment., The effects on emotional exhaustion are significant even at more than 6 months after the end of the intervention. [ABSTRACT FROM AUTHOR]

Aim: Health-related quality of life (HRQoL) and peer relationships were investigated in adolescents with developmental coordination disorder (DCD) and attention-deficit-hyperactivity disorder (ADHD).Method: Adolescents with DCD (n=9), ADHD (n=9), DCD and ADHD (n=10), and typically developing adolescents (n=16) completed the following questionnaires: KIDSCREEN-52 Health-Related Quality of Life Questionnaire and Peer Relations Questionnaire for Children. Twenty-five participants took part in semi-structured interviews.Results: Adolescents with DCD and ADHD had lower HRQoL on the mood and emotions, school environment, and financial resources scales of the KIDSCREEN-52 than adolescents in the DCD and typically developing groups (all p<0.05). On the Peer Relations Questionnaire for Children, the DCD and ADHD group reported significantly higher victimization compared with those in the typically developing (p=0.030) and DCD (p=0.010) groups. Qualitative interviews among young people with DCD and ADHD revealed feelings of marginalization and victimization. Descriptors such as 'misfits', 'oddballs', 'weird', and 'the rejects' were used to describe themselves.Interpretation: HRQoL and peer relationships are negatively affected in adolescents with DCD and ADHD. WHAT THIS PAPER ADDS?: Children with developmental coordination disorder (DCD) do not display poorer overall health-related quality of life (HRQoL) versus typically developing controls. Having DCD and attention-deficit-hyperactivity disorder (ADHD) was associated with poorer HRQoL. Adolescents with DCD and ADHD experience significantly higher levels of peer victimization than typically developing adolescents. HRQoL and peer relationships are significantly associated in adolescent respondents. [ABSTRACT FROM AUTHOR]

Abstract: Background: Patients are increasingly offered electronic access to their doctors' notes, and many consistently receive paper After‐Visit Summaries. Specific feedback from patients about notes and summaries are lacking, particularly within safety‐net settings. Design: A mixed methods study Setting and Participants: Patients with poorly controlled diabetes attending two urban safety‐net primary care clinics in Washington State. Methods: Patients read their own most recent clinic note and After‐Visit Summary, then completed a brief survey followed by a focus group discussion (3 groups in a large general medicine teaching clinic and 1 in an HIV/AIDS clinic) about their perceptions of the clinic note and After‐Visit Summary. Results: Twenty‐seven patients participated; 70% were male, 41% were Black, 48% were unemployed or disabled, 56% reported fair/poor health, and 37% had accessed the electronic patient portal. A majority of patients felt their note content was useful (89%); a minority reported that their notes were not accurate (19%), had too much medical jargon (29%), or were too long (26%). Themes identified from the discussions included reliance on the provider to explain confusing content; a desire for more rather than less detail; and perceived inaccuracies, particularly in heavily templated notes. In each focus group, one or more portal users were enthusiastically willing to teach other patients. Conclusions: The majority of focus group participants at this safety‐net site had not accessed the electronic patient portal, but those who had were willing to promote the portal benefits and assist others. Patients identified specific opportunities to improve clinic notes and After‐Visit Summaries. [ABSTRACT FROM AUTHOR]

Aim: To describe behavioural and psychiatric outcomes of children within 10 years of convulsive status epilepticus (CSE).Method: Children originally identified by the population-based North London Convulsive Status Epilepticus in Childhood Surveillance Study were followed-up between July 2009 and February 2013. They were grouped into epilepsy- and non-epilepsy-related CSE, and compared with population norms and healthy controls using the Strengths and Difficulties Questionnaire; the Autism Spectrum Screening Questionnaire; and the Swanson, Nolan, and Pelham questionnaire. Children who scored above recommended clinical cut-offs on any scale were invited for a neuropsychiatric assessment. Regression models were fitted to identify clinically relevant covariates associated with behavioural outcomes.Results: At a mean follow-up of 8.1 years post-CSE, 28% of enrolled children were found to have a psychiatric disorder. Children with epilepsy-related CSE scored higher than norms on all scales and children with non-epilepsy-related CSE scored higher than norms on the Strengths and Difficulties Questionnaire and the Autism Spectrum Screening Questionnaire. Presence of seizures at baseline and recurrence of CSE was associated with worse outcomes in the group with epilepsy. Intellectual abilities were associated with behavioural outcomes in all participants.Interpretation: A large proportion of children manifest behavioural issues 8 years after CSE. The present data highlight the need for behavioural screening in children with neurodevelopmental impairments post-CSE.What This Paper Adds: Eight years post convulsive status epilepticus (CSE), 37% of parents report behavioural issues. Of enrolled children, 28% were found to have a Diagnostic and Statistical Manual mental disorder. Intellectual abilities are strongly associated with behavioural outcomes in children post-CSE. [ABSTRACT FROM AUTHOR]

Introduction Collabo RATE is a brief patient survey focused on shared decision making. This paper aims to (i) provide insight on facilitators and challenges to implementing a real-time patient survey and (ii) evaluate Collabo RATE scores and response rates across multiple clinical settings with varied patient populations. Method All adult patients at three United States primary care practices were eligible to complete Collabo RATE post-visit. To inform key learnings, we aggregated all mentions of unanticipated decisions, problems and administration errors from field notes and email communications. Mixed-effects logistic regression evaluated the impact of site, clinician, patient age and patient gender on the Collabo RATE score. Results While Collabo RATE score increased only slightly with increasing patient age ( OR 1.018, 95% CI 1.014-1.021), female patient gender was associated with significantly higher Collabo RATE scores ( OR 1.224, 95% CI 1.073-1.397). Clinician also predicts Collabo RATE score (random effect variance 0.146). Site-specific factors such as clinical workflow and checkout procedures play a key role in successful in-clinic implementation and are significantly related to Collabo RATE scores, with Site 3 scoring significantly higher than Site 1 ( OR 1.759, 95% CI 1.216 to 2.545) or Site 2 (z=−2.71, 95% CI −1.114 to −0.178). Discussion This study demonstrates that Collabo RATE can be used in diverse primary care settings. A clinic's workflow plays a crucial role in implementation. Patient experience measurement risks becoming a burden to both patients and administrators. Episodic use of short measurement tools could reduce this burden. [ABSTRACT FROM AUTHOR]

Breastfeeding is recommended until 6 months of age, but a wide range of infant formula is available for nonbreastfed or partially breastfed infants. Our aim was to describe infant formula selection and to examine social- and health-related factors associated with this selection. Analyses were based on 13,291 infants from the French national birth cohort Etude Longitudinale Française depuis l'Enfance. Infant diet was assessed at Month 2 by phone interview and monthly from Months 3 to 10 via internet/paper questionnaires. Infant formulas were categorized in 6 groups: extensively or partially hydrolysed, regular with or without prebiotics/probiotics, and thickened with or without prebiotics/probiotics. Associations between type of infant formula used at 2 months and family or infant characteristics were assessed by multinomial logistic regressions. At Month 2, 58.1% of formula-fed infants were fed with formula enriched in prebiotics/probiotics, 31.5% with thickened formula, and 1.4% with extensively hydrolysed formula. The proportion of formula-fed infants increased regularly, but the type of infant formula used was fairly stable between 2 and 10 months. At Month 2, extensively hydrolysed formulas were more likely to be used in infants with diarrhoea or regurgitation problems. Partially hydrolysed formulas were more often used in families with high income, with a history of allergy, or with infants with regurgitation issues. Thickened formulas were used more with boys, preterm infants, infants with regurgitation issues, or in cases of early maternal return to work. The main factors related to the selection of infant formula were family and infant health-related ones. [ABSTRACT FROM AUTHOR]

Behaviour change communication (BCC) can improve infant and young child nutrition (IYCN) knowledge, practices, and health outcomes. However, few studies have examined whether the improved knowledge persists after BCC activities end. This paper assesses the effect of nutrition sensitive social protection interventions on IYCN knowledge in rural Bangladesh, both during and after intervention activities. We use data from two, 2-year, cluster randomised control trials that included nutrition BCC in some treatment arms. These data were collected at intervention baseline, midline, and endline, and 6-10 months after the intervention ended. We analyse data on IYCN knowledge from the same 2,341 women over these 4 survey rounds. We construct a number correct score on 18 IYCN knowledge questions and assess whether the impact of the BCC changes over time for the different treatment groups. Effects are estimated using ordinary least squares accounting for the clustered design of the study. There are 3 main findings: First, the BCC improves IYCN knowledge substantially in the 1st year of the intervention; participants correctly answer 3.0-3.2 more questions (36% more) compared to the non-BCC groups. Second, the increase in knowledge between the 1st and 2nd year was smaller, an additional 0.7-0.9 correct answers. Third, knowledge persists; there are no significant decreases in IYCN knowledge 6-10 months after nutrition BCC activities ended. [ABSTRACT FROM AUTHOR]

Realistic planning for a nutrition intervention is a critical component of implementation, yet effective approaches have been poorly documented. Under the auspices of 'The Micronutrient Powders Consultation: Lessons Learned for Operational Guidance,' 3 working groups were formed to summarize experiences and lessons across countries regarding micronutrient powders (MNP) interventions for young children. This paper focuses on programmatic experiences in the planning stages of an MNP intervention, encompassing assessment, enabling environment and adaptation, as well as considerations for supply. Methods included a review of published and grey literature, key informant interviews, and deliberations throughout the consultation process. We found that assessments helped justify adopting an MNP intervention, but these assessments were often limited by their narrow scope and inadequate data. Establishing coordinating bodies and integrating MNP into existing policies and programmes have helped foster an enabling environment and support programme stability. Formative research and pilots have been used to adapt MNP interventions to specific contexts, but they have been insufficient to inform scale-up. In terms of supply, most countries have opted to procure MNP through international suppliers, but this still requires understanding and navigating the local regulatory environment at the earliest stages of an intervention. Overall, these findings indicate that although some key planning and supply activities are generally undertaken, improvements are needed to plan for effective scale-up. Much still needs to be learned on MNP planning, and we propose a set of research questions that require further investigation. [ABSTRACT FROM AUTHOR]

An effective delivery strategy coupled with relevant social and behaviour change communication (SBCC) have been identified as central to the implementation of micronutrient powders (MNP) interventions, but there has been limited documentation of what works. Under the auspices of 'The Micronutrient Powders Consultation: Lessons Learned for Operational Guidance,' three working groups were formed to summarize experiences and lessons across countries regarding MNP interventions for young children. This paper focuses on programmatic experiences related to MNP delivery (models, platforms, and channels), SBCC, and training. Methods included a review of published and grey literature, interviews with key informants, and deliberations throughout the consultation process. We found that most countries distributed MNP free of charge via the health sector, although distribution through other platforms and using subsidized fee for product or mixed payment models have also been used. Community-based distribution channels have generally shown higher coverage and when part of an infant and young child feeding approach, may provide additional benefit given their complementarity. SBCC for MNP has worked best when focused on meeting the MNP behavioural objectives (appropriate use, intake adherence, and related infant and young child feeding behaviours). Programmers have learned that reincorporating SBCC and training throughout the intervention life cycle has allowed for much needed adaptations. Diverse experiences delivering MNP exist, and although no one-size-fits-all approach emerged, well-established delivery platforms, community involvement, and SBCC-centred designs tended to have more success. Much still needs to be learned on MNP delivery, and we propose a set of implementation research questions that require further investigation. [ABSTRACT FROM AUTHOR]

Continual course correction during implementation of nutrition programmes is critical to address factors that might limit coverage and potential for impact. Programme improvement requires rigorous scientific inquiry to identify and address implementation pathways and the factors that affect them. Under the auspices of 'The Micronutrient Powders Consultation: Lessons Learned for Operational Guidance,' 3 working groups were formed to summarize experiences and lessons across countries regarding micronutrient powder (MNP) interventions for young children. This paper focuses on how MNP interventions undertook key elements of programme improvement, specifically, the use of programme theory, monitoring, process evaluation, and supportive supervision. Methods included a review of published and grey literature, interviews with key informants, and deliberations throughout the consultation process. We found that although much has been written and published about the use of monitoring and process evaluation to inform MNP interventions at small scale, there has been little formal documentation of lessons for the transition from pilot to scaled implementation. Supervision processes and experiences are not documented, and to our knowledge, there is no evidence of whether they have been effective to improve implementation. Improving the efficiency and effectiveness of interventions requires identification of critical indicators for detecting implementation challenges and drivers of impact, integration with existing programmes and systems, strengthened technical capacity, and financing for implementation of effective monitoring systems. Our understanding of programme improvement for MNP interventions is still incomplete, especially outside of the pilot stage, and we propose a set of implementation research questions that require further investigation. [ABSTRACT FROM AUTHOR]

Good nutrition in the early years of life is vitally important for a child's development, growth and health. Children's diets in the United Kingdom are known to be poor, particularly among socially disadvantaged groups, and there is a need for timely and appropriate interventions that support parents to improve the diets of young children. The Medical Research Council has highlighted the importance of conducting developmental and exploratory research prior to undertaking full-scale trials to evaluate complex interventions, but have provided very limited detailed guidance on the conduct of these initial phases of research. This paper describes the initial developmental stage and the conduct of an exploratory randomised controlled trial undertaken to determine the feasibility and acceptability of a family-centred early years' nutrition intervention. Choosing Healthy Eating when Really Young ( CHERRY) is a programme for families with children aged 18 months to 5 years, delivered in children's centres in one urban ( Islington) and one rural ( Cornwall) location in the United Kingdom. In the development stage, a mixed-methods approach was used to investigate the nature of the problem and options for support. A detailed review of the evidence informed the theoretical basis of the study and the creation of a logic model. In the feasibility and pilot testing stage of the exploratory trial, 16 children's centres, with a sample of 394 families were recruited onto the study. We hope that the methodology, which we present in this paper, will inform and assist other researchers in conducting community-based, exploratory nutrition research in early years settings. [ABSTRACT FROM AUTHOR]

Background: As most young teenagers grow up in families, parents might be well situated to facilitate and support their weight management and thereby prevent or manage obesity prior to adulthood. Aim: This paper explores parents' perceptions of, and views about, their teenage children's weight and the factors that influence parents' weight management strategies. Design, setting and participants: We conducted two qualitative studies in Scotland, UK, involving in‐depth interviews with the parents of overweight/obese and ‘normal’ weight 13–15 year olds (n = 69). Findings: Parents' concerns about their own weight provided useful context for understanding their attitudes or actions with regards to their teenage child. Some parents described their teenager's weight as being of concern to them, although puberty often introduced confusion about a child's weight status. Genetic explanations were very often put forward as a way of making sense of teenage weight or body size. Frustration about advising teenagers about weight management was expressed, and some parents worried about giving their growing child a ‘problem’ if they directly raised concerns about weight with them. Discussion: Parents' views about their own weight as well as social and moral norms about labelling a teenager as overweight or as needing help with their weight could usefully inform patient‐centred service development. Parent/teenage partnerships and supporting parents to create a healthy home in which teenagers can make healthier choices are suggestions for intervention development. Conclusion: The study highlights the importance of taking parents' perceptions into account when developing family‐based interventions to address teenage overweight and obesity. [ABSTRACT FROM AUTHOR]

Background Involving service users in research can be an effective way of improving the practicalities and acceptability of interventions for target end users. Objectives The current paper presented two consensus methods, not commonly used in consultation with service users, to develop a peer support intervention for family carers of people with dementia ( SHIELD Carer Supporter Programme). Design Study 1 was a modified Delphi process combined with a consensus conference to explore details of the intervention from the carer and volunteer perspective. Study 2 was an anonymous reader consultation to develop informed consent documents for the intervention trial. Median scores were used to measure and establish consensus. Open-ended responses were thematically analysed. Setting and participants Study 1: twenty-five delegates participated (eight were current/former carers) in the first round Delphi questionnaire, with 21 attending the conference. Five completed the Round 2 questionnaire. Study 2: six family carers and 11 people with dementia took part in the consultation. Results Study 1: the role of the peer supporters was developed in terms of relational and practical aspects of the intervention. Study 2: changes were made to the documents, reflecting service user input, but the effectiveness of this less discursive type of service user involvement was unclear. Discussion and conclusions Study 1 methods allowed for service users to contribute significantly and meaningfully, but maybe limiting some design innovation. Study 2 took a more traditional and less collaborative approach. This has implications for balancing the needs of the research with meaningful service user involvement in research. [ABSTRACT FROM AUTHOR]

Age-appropriate infant and young child feeding (IYCF) practices are critical to child nutrition.The objective of this paper was to examine the associations between age-appropriate IYCF practices and child nutrition outcomes in India using data from ~18 463 children of 0-23.9 months old from India's National Family Health Survey, 2005-06-3. The outcome measures were child height-for-age z-score (HAZ), weight-for-age z-score (WAZ), weight-for-height z-score, stunting, underweight and wasting. Linear and logistic regression analyses were used, accounting for the clustered survey data. Regression models were adjusted for child, maternal, and household characteristics, and state and urban/rural residence. The analyses indicate that in India suboptimal IYCF practices are associated with poor nutrition outcomes in children. Early initiation of breastfeeding and exclusive breastfeeding were not associated with any of the nutrition outcomes considered. Not consuming any solid or semi-solid foods at 6-8.9 months was associated with being underweight (P < 0.05). The diet diversity score and achieving minimum diet diversity (⩾4 food groups) for children 6-23 months of age were most strongly and significantly associated with HAZ, WAZ, stunting and underweight (P < 0.05). Maternal characteristics were also strongly associated with child undernutrition. In summary, poor IYCF practices, particularly poor complementary foods and feeding practices, are associated with poor child nutrition outcomes in India, particularly linear growth. [ABSTRACT FROM AUTHOR]

Aiming at preventing excessive weight gain during pregnancy, 10 specific dietary recommendations are given to pregnant women in the intervention arm of the Norwegian Fit for Delivery (FFD) study. This paper presents the rationale and test-retest reliability of the food frequency questionnaire (FFQ) and a dietary score measuring adherence to the recommendations. The study is part of the ongoing FFD study, a randomised, controlled, intervention study in nulliparous pregnant women.A 43-item FFQ was developed for the FFD study.A dietary score was constructed from 10 subscales corresponding to the 10 dietary recommendations.Adding the subscales yielded a score from 0 to 10 with increasing score indicating healthier dietary behaviour.The score was divided into tertiles, grouping participants into low, medium and high adherence to the dietary recommendations. Pregnant women attending ultrasound screening at about week 19 of pregnancy were asked to complete the FFQ twice, 2 weeks apart. Of 154 pregnant women completing the first questionnaire, 106 (69%) completed the form on both occasions and was included in the study.The test-retest correlations of the score and subscales were r = 0.68 and r = 0.56-0.84, respectively (both P ⩽ 0.001). There was 68% test-retest correct classification of the score and 70-87% of the subscales. In conclusion, acceptable test-retest reliability of the FFQ and the dietary score was found. The score will be used in the FFD study to measure adherence to the dietary recommendations throughout pregnancy and in the following year post-partum. [ABSTRACT FROM AUTHOR]

This paper aims to introduce a method for mapping local service provision to local demographic and health outcome data, to inform evidence-based policy and practice in public health. A mapping exercise was conducted in London, England with the aims of: (1) describing services provided for breastfeeding women in primary and tertiary health care sectors and government, voluntary and private sectors; and (2) linking this information with routine data on deprivation, breastfeeding rates and health outcomes. Quantitative data on local breastfeeding services were collected via an online questionnaire by a designated 'mapping lead' in each locality. Data were collected at the level of individual health care organisations on the provision, nature and management of breastfeeding services, and related organisational inputs such as leadership, staffing, accreditation and policy. Demographic and health outcome data were identified from existing routine national data collections. Ninety-one per cent of eligible acute and primary care organisations participated in the mapping exercise. A range of mapping tools and profile were developed and launched in 2009 (). These tools can be used for descriptive analyses of service provision on the basis of local need. Comparative analyses on the impact of service provision on breastfeeding or health outcomes will be feasible from 18 months of data collection onwards. This case study has demonstrated the potential utility of this mapping method to inform effective implementation and evaluation of public health policy in practice consistent with the World Health Organisation framework. Formal evaluation of the utility of the tools is recommended. [ABSTRACT FROM AUTHOR]

This paper examines the moderating role of negative affectivity and risk aversion in the relationships of two bases of continuance organizational commitment (continuance-sacrifices and continuance-alternatives) to turnover, within a stress-coping perspective. More specifically, we propose that (a) the perspective of leaving is a source of stress for those who stay due to the fear of losing valued advantages (i.e. high continuance-sacrifices commitment) and (b) staying is perceived to be stressful by individuals who remain based on a lack of employment alternatives (i.e. high continuance-alternatives commitment). We argue that these perceptions are magnified by negative affectivity and risk aversion, resulting in individuals who present these traits to use avoidance-withdrawal strategies in coping with these situations. Accordingly, based on a sample of 509 human resource management professionals, we found (a) negative affectivity and risk aversion to strengthen the negative relationship of continuance-sacrifices commitment to turnover and (b) continuance-alternatives commitment to relate positively to turnover among individuals with high negative affectivity. We discuss the implications of these findings for our understanding of how commitment mindsets and personality traits affect turnover decisions. [ABSTRACT FROM AUTHOR]