ObjectivesTo engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability.DesignBritish Academy of Childhood Disability (BACD)-James Lind Alliance research priority setting partnership bringing together patients, carers and clinicians as equal stakeholders.SettingUK health service and community.MethodsThe BACD Strategic Research Group formed the partnership. A Steering Group was established; charity and professional partner organisations were recruited. Suggestions were gathered in an open survey and from research recommendations for statutory guidance. Items were aggregated to formulate indicative research questions and verified as uncertainties from research evidence. An interim survey was used to rank the questions to shortlist topics. A mixed group of stakeholders discussed the top 25 questions at the final priority setting workshop agreeing a final rank order and the top 10 research priorities.ParticipantsPartner organisations were 13 charities and 8 professional societies. 369 people submitted suggestions (40% non-clinicians). 76 people participated in the interim prioritisation (26 parents, 1 young person, 10 charity representatives, 39 clinicians); 22 took part in the final workshop (3 young people, 7 parents, 3 charity representatives, 9 professionals).ResultsThe top three research priorities related to (1) establishing the optimal frequency and intensity (dose) for mainstream therapies, (2) means for selecting and encouraging use of communication strategies and (3) ways to improve children's attitudes towards disability. The top 10 included evaluating interventions to promote mobility, self-efficacy, mental health, continence, physical fitness, educational inclusion and reduce impacts of sleep disturbance.ConclusionsThe methodology provided a systematic and transparent process to identify research priorities that included stakeholders that have typically not contributed to setting the research agenda. The top 10 and other topics identified provide a resource for researchers and agencies that fund research
Background Children in the UK care system often face multiple disadvantages in terms of health, education and future employment. This is especially true of mental health where they present with greater mental health needs than other children. Although transition from care – the process of leaving the local authority as a child‐in‐care to independence – is a key juncture for young people, it is often experienced negatively with inconsistency in care and exacerbation of existing mental illness. Those receiving support from child and adolescent mental health services (CAMHS), often experience an additional, concurrent transfer to adult services (AMHS), which are guided by different service models which can create a care gap between services. Method This qualitative study explored care‐leavers’ experiences of mental illness, and transition in social care and mental health services. Twelve care‐leavers with mental health needs were interviewed and data analysed using framework analysis. Results Sixteen individual themes were grouped into four superordinate themes: overarching attitudes towards the care journey, experience of social care, experience of mental health services and recommendations. Conclusions Existing social care and mental health teams can improve the care of care‐leavers navigating multiple personal, practical and service transitions. Recommendations include effective Pathway Planning, multiagency coordination, and stating who is responsible for mental health care and its coordination. Participants asked that youth mental health services span the social care transition; and provide continuity of mental health provision when care‐leavers are at risk of feeling abandoned and isolated, suffering deteriorating mental health and struggling to establish new relationships with professionals. Young people say that the key to successful transition and achieving independence is maintaining trust and support from services.
We reviewed the evidence for hip surveillance in children with cerebral palsy from the published literature. Publications were identified using the Cochrane controlled trials register, the MEDLINE, EMBASE and CINAHL databases and by hand searching key journals and their references. Studies were included if they reported the frequency, associated risk factors or surveillance measures undertaken to identify subluxation or dislocation of the hip in children with cerebral palsy. Assessment of the quality of the methodology was undertaken independently by two researchers. Four studies described the natural history, incidence and risk factors for dislocation of the hip. Two reported their surveillance results. Approximately 60% of children who were not walking by five years of age were likely to develop subluxation of the hip, with the greatest risk in those with severe neurological involvement. The introduction of surveillance programmes allowed earlier identification of subluxation and reduced the need for surgery on dislocated hips. Surveillance can identify children most at risk of subluxation using radiological methods which are widely available.
BackgroundEffective programmes to help children manage their weight are required. ‘Families for Health’ focuses on a parenting approach, designed to help parents develop their parenting skills to support lifestyle change within the family. Families for Health version 1 showed sustained reductions in mean body mass index (BMI) z-score after 2 years in a pilot project.ObjectiveThe aim was to evaluate its effectiveness and cost-effectiveness in a randomised controlled trial (RCT).DesignThe trial was a multicentre, investigator-blind RCT, with a parallel economic and process evaluation, with follow-up at 3 and 12 months. Randomisation was by family unit, using a 1 : 1 allocation by telephone registration, stratified by three sites, with a target of 120 families.SettingThree sites in the West Midlands, England, UK.ParticipantsChildren aged 6–11 years who were overweight (≥ 91st centile BMI) or obese (≥ 98th centile BMI), and their parents/carers. Recruitment was via referral or self-referral.InterventionsFamilies for Health version 2 is a 10-week, family-based community programme with parallel groups for parents and children, addressing parenting, lifestyle, social and emotional development. Usual care was the treatment for childhood obesity provided within each locality.Main outcome measuresJoint primary outcome measures were change in children’s BMI z-score and incremental cost per quality-adjusted life-year (QALY) gained at 12 months’ follow-up (QALYs were calculated using the European Quality of Life-5 Dimensions Youth version). Secondary outcome measures included changes in children’s waist circumference, percentage body fat, physical activity, fruit/vegetable consumption and quality of life. Parents’ BMI and mental well-being, family eating/activity, parent–child relationships and parenting style were also assessed. The process evaluation documented recruitment, reach, dose delivered, dose received and fidelity, using mixed methods.ResultsThe study recruited 115 families (128 children; 63 boys and 65 girls), with 56 families randomised to the Families for Health arm and 59 to the ‘usual-care’ control arm. There was 80% retention of families at 3 months (Families for Health, 46 families; usual care, 46 families) and 72% retention at 12 months (Families for Health, 44 families; usual care, 39 families). The change in BMI z-score at 12 months was not significantly different in the Families for Health arm and the usual-care arm [0.114, 95% confidence interval (CI) –0.001 to 0.229;p = 0.053]. However, within-group analysis showed that the BMI z-score was significantly reduced in the usual-care arm (–0.118, 95% CI –0.203 to –0.034;p = 0.007), but not in the Families for Health arm (–0.005, 95% CI –0.085 to 0.078;p = 0.907). There was only one significant difference between groups for secondary outcomes. The economic evaluation, taking a NHS and Personal Social Services perspective, showed that mean costs 12 months post randomisation were significantly higher for Families for Health than for usual care (£998 vs. £548;p < 0.001). The mean incremental cost-effectiveness of Families for Health was estimated at £552,175 per QALY gained. The probability that the Families for Health programme is cost-effective did not exceed 40% across a range of thresholds. The process evaluation demonstrated that the programme was implemented, as planned, to the intended population and any adjustments did not deviate widely from the handbook. Many families waited more than 3 months to receive the intervention. Facilitators’, parents’ and children’s experiences of Families for Health were largely positive and there were no adverse events. Further analysis could explore why some children show a clinically significant benefit while others have a worse outcome.ConclusionsFamilies for Health was neither effective nor cost-effective for the management of obesity in children aged 6–11 years, in comparison with usual care. Further exploration of the wide range of responses in BMI z-score in children following the Families for Health and usual-care interventions is warranted, focusing on children who had a clinically significant benefit and those who showed a worse outcome with treatment. Further research could focus on the role of parents in the prevention of obesity, rather than treatment.Trial registrationCurrent Controlled Trials ISRCTN45032201.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 21, No. 1. See the NIHR Journals Library website for further project information.
ObjectiveTo evaluate the effectiveness and cost utility of a universally provided early years parenting programme.DesignMulticentre randomised controlled trial with cost-effectiveness analysis.SettingEarly years centres in four deprived areas of South Wales.ParticipantsFamilies with children aged between 2 and 4 years. 286 families were recruited and randomly allocated to the intervention or waiting list control.InterventionThe Family Links Nurturing Programme (FLNP), a 10-week course with weekly 2 h facilitated group sessions.Main outcome measuresNegative and supportive parenting, child and parental well-being and costs assessed before the intervention, following the course (3 months) and at 9 months using standardised measures.ResultsThere were no significant differences in primary or secondary outcomes between trial arms at 3 or 9 months. With ‘+’ indicating improvement, difference in change in negative parenting score at 9 months was +0.90 (95%CI −1.90 to 3.69); in supportive parenting, +0.17 (95%CI −0.61 to 0.94); and 12 of the 17 secondary outcomes showed a non-significant positive effect in the FLNP arm. Based on changes in parental well-being (SF-12), the cost per quality-adjusted life year (QALY) gained was estimated to be £34 913 (range 21 485–46 578) over 5 years and £18 954 (range 11 664–25 287) over 10 years. Probability of cost per QALY gained below £30 000 was 47% at 5 years and 57% at 10 years. Attendance was low: 34% of intervention families attended no sessions (n=48); only 47% completed the course (n=68). Also, 19% of control families attended a parenting programme before 9-month follow-up.ConclusionsOur trial has not found evidence of clinical or cost utility for the FLNP in a universal setting. However, low levels of exposure and contamination mean that uncertainty remains.Trial registrationThe trial is registered with Current Controlled Trials ISRCTN13919732.
Children who enter public care are among the most vulnerable in society. In addition to services for their medical needs, a focus on identifying and intervening with families in need where children are at high risk of entering public care is a public health priority. This paper aims to identify the characteristics of children, their parents or their social circumstances which are associated with children entering public care. The databases searched were CSA Illumina, British Education Index, ChildData, CINAHL, Excerpta Medica, MEDLINE, the Campbell and Cochrane Collaborations, NHS Centre for Reviews and Dissemination, NHS Evidence, Social Care Online and TRIP; from start dates to 7 February 2011. A total of 6417 titles were reviewed. After review, 10 papers with cohort or case-control methodologies met the inclusion criteria and the included papers were appraised using questions from the Critical Appraisal Skills Programme to guide the critique of case-control and cohort studies. A narrative synthesis is used to describe the research identified. Socio-economic status, maternal age at birth, health risk factors and other factors including learning difficulties, membership of an ethnic minority group and single parenthood are described as risk factors associated with children entering public care. Health risk factors have been explored using databases developed for other purposes such as health insurance or hospital discharge. A number of risk factors for children entering public care are identified from the literature, some were culturally specific and may not generalize. The interaction between different risk factors needs testing in longitudinal data sets.
ObjectiveEvaluating effectiveness and cost-effectiveness of ‘Families for Health V2′ (FFH) compared with usual care (UC).DesignMulticentre randomised controlled trial (RCT) (investigators blinded, families unblinded) and economic evaluation. Stratified randomisation by family; target of 120 families.SettingThree National Health Service Primary Care Trusts in West Midlands, England.ParticipantsOverweight or obese (≥91st or ≥98th centile body mass index (BMI)) children aged 6–11 years and their parents/carers, recruited March 2012–February 2014.InterventionsFFH; a 10-week community-based family programme addressing parenting, lifestyle change and social and emotional development. UC; usual support for childhood obesity at each site.Main outcome measuresPrimary outcomes were 12-months change in children's BMI z-score and incremental cost per quality-adjusted life-year gained (QALY). Secondary outcomes included changes in children's physical activity, fruit and vegetable consumption and quality of life, parents' BMI and mental well-being, family eating/activity, parent-child relationships and parenting style.Results115 families (128 children) were randomised to FFH (n=56) or UC (n=59). There was no significant difference in BMI z-score 12-months change (0.114, 95% CI −0.001 to 0.229, p=0.053; p=0.026 in favour of UC with missing value multiple imputation). One secondary outcome, change in children's waist z-score, was significantly different between groups in favour of UC (0.15, 95% CI 0.00 to 0.29). Economic evaluation showed that mean costs were significantly higher for FFH than UC (£998 vs £548, p<0.001). Mean incremental cost-effectiveness of FFH was estimated at £552 175 per QALY.ConclusionsFFH was neither effective nor cost-effective for the management of obesity compared with UC.Trial registration numberISRCTN45032201.
Should randomised controlled trials be the 'gold standard' for research on preventive interventions for children. Abstract (152 words)Randomised Controlled Trials (RCTs) have been offered a privileged position in terms of the evidence base for preventive interventions for children, but there are practical and theoretical issues that challenge this research methodology. Well recognised issues include the impossibility of blinding participants, the problem of identifying a pre-eminent outcome measure for complex interventions, and problems with limiting access to equivalent interventions in real world settings. A further theoretical problem is the exclusion from RCTs of families who are most ready to change, resulting in an apparently reduced level of intervention effectiveness. Qualitative evidence from a recent RCT suggests that this problem could be operating in some prevention trials. Increasing sample sizes can overcome some of these problems, but the cost of the necessarily huge trials becomes disproportionate to the low cost of preventive interview. Given the limitations on RCTs in preventive settings, their privileged position in terms of research evidence maybe undeserved. Summary of policy and practice implications (135)Policy makers and commissioners value certainty and RCTs are considered most likely to provide that certainty. In times of scare resources, interventions without an RCT evidence base are an easy target for cuts and/or decisions not to invest. In the context of preventive services for children this view is debatable. Because social, educational and public health interventions are complex and are offered in the context of a complex world, it is simplistic to believe that one research approach can provide all the necessary information on what works. A more sophisticated understanding of RCTs and complex interventions suggest that we should rebalance the hierarchy of evidence and give more credence to good studies of other designs. This might make policy makers and commissioners lives more complex and less certain, but it might improve outcomes for children. Category 2 Methodological Issues and DevelopmentsWord Count 3684
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