Douglas E. Simkiss

A systematic review of the evidence for hip surveillance in children with cerebral palsy

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.

Should randomised controlled trials be the “gold standard” for research on preventive interventions for children?

Purpose – Randomised controlled trials (RCTs) have been offered a privileged position in terms of the evidence base for preventive interventions for children, but practical and theoretical issues challenge this research methodology. This paper aims to address this issue.Design/methodology/approach – This paper analyses practical and methodological issues of using RCTs within childrens preventive services and presents the results of a qualitative study using data collected from parents who were asked to take part in an RCT of a preventive intervention.Findings – 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 a reduced level of intervention effectiveness. Qualitative evidence from one recent RCT sugges...

A systematic literature review of the risk factors associated with children entering public care

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.

Effectiveness and cost-effectiveness of a universal parenting skills programme in deprived communities: multicentre randomised controlled trial

Objective To evaluate the effectiveness and cost utility of a universally provided early years parenting programme. Design Multicentre randomised controlled trial with cost-effectiveness analysis. Setting Early years centres in four deprived areas of South Wales. Participants Families with children aged between 2 and 4 years. 286 families were recruited and randomly allocated to the intervention or waiting list control. Intervention The Family Links Nurturing Programme (FLNP), a 10-week course with weekly 2 h facilitated group sessions. Main outcome measures Negative 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. Results There 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. Conclusions Our 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 registration The trial is registered with Current Controlled Trials ISRCTN13919732.

Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership

Objectives To 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. Design British Academy of Childhood Disability (BACD)-James Lind Alliance research priority setting partnership bringing together patients, carers and clinicians as equal stakeholders. Setting UK health service and community. Methods The 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. Participants Partner 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). Results The 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 childrens 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. Conclusions The 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

A systematic review of the risk factors associated with children entering public care

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.

Health service use in families where children enter public care: a nested case control study using the General Practice Research Database.

BackgroundAt least 3% of children spend some of their childhood in public care and, as a group, have poor outcomes across a range of education, employment, health and social care outcomes. Research, using social care or government datasets, has identified a number of risk factors associated with children entering public care but the utility of risk factors in clinical practice is not established. This paper uses routine primary health care data to see if risk factors for children entering public care can be identified in clinical practice.MethodsA nested case control methodology using routine primary care data from the United Kingdom. Health service use data were extracted for the 12 months before the case child entered public care and compared with 12 months of data for four control mother child pairs per case pair, matched on the age and sex of the child and the general practice. Exposures of interest were developed from a systematic review of the literature on risk factors associated with children entering public care.ResultsConditional logistic regression was used to investigate the combined effect of more than one exposure of interest. Maternal mental illness (OR 2.51, 95% CI 1.55-4.05), maternal age at birth of the child, socio-economic status (5th quintile vs. 1st quintile OR 7.14, 95% CI 2.92-17.4), maternal drug use (OR 28.8, 95% CI 2.29-363), non attendance at appointments (OR 2.42, 95% CI 1.42-4.14), child mental illness (OR 2.65, 95% CI 1.42-4.96) and child admission to hospital (OR 3.31, 95% CI 1.21-9.02) were all significantly associated with children entering public care. Maternal use of primary care contraception services was negatively associated with children entering public care (OR 0.52, 95% CI 0.31-0.87).ConclusionsDifferences in health service use can be identified from routine primary care data in mother child pairs where children enter public care after controlling for maternal age and socio-economic status. The interaction between different risk factors needs testing in a cumulative risk model using longitudinal datasets.

Childhood disability and socio-economic circumstances in low and middle income countries: systematic review

BackgroundThe majority of children with disability live in low and middle income (LAMI) countries. Although a number of important reviews of childhood disability in LAMI countries have been published, these have not, to our knowledge, addressed the association between childhood disability and the home socio-economic circumstances (SEC). The objective of this study is to establish the current state of knowledge on the SECs of children with disability and their households in LAMI countries through a systematic review and quality assessment of existing research.MethodsElectronic databases (MEDLINE; EMBASE; PUBMED; Web of Knowledge; PsycInfo; ASSIA; Virtual Health Library; POPLINE; Google scholar) were searched using terms specific to childhood disability and SECs in LAMI countries. Publications from organisations including the World Bank, UNICEF, International Monetary Fund were searched for. Primary studies and reviews from 1990 onwards were included. Studies were assessed for inclusion, categorisation and quality by 2 researchers.Results24 primary studies and 13 reviews were identified. Evidence from the available literature on the association between childhood disability and SECs was inconsistent and inconclusive. Potential mechanisms by which poverty and low household SEC may be both a cause and consequence of disability are outlined in the reviews and the qualitative studies. The association of poor SECs with learning disability and behaviour problems was the most consistent finding and these studies had low/medium risk of bias. Where overall disability was the outcome of interest, findings were divergent and many studies had a high/medium risk of bias. Qualitative studies were methodologically weak.ConclusionsThis review indicates that, despite socially and biologically plausible mechanisms underlying the association of low household SEC with childhood disability in LAMI countries, the empirical evidence from quantitative studies is inconsistent and contradictory. There is evidence for a bidirectional association of low household SEC and disability and longitudinal data is needed to clarify the nature of this association.

Measuring the impact and costs of a universal group based parenting programme: protocol and implementation of a trial

BackgroundSub-optimal parenting is a common risk factor for a wide range of negative health, social and educational outcomes. Most parenting programmes have been developed in the USA in the context of delinquency prevention for targeted or indicated groups and the main theoretical underpinning for these programmes is behaviour management. The Family Links Nurturing Programme (FLNP) focuses on family relationships as well as behaviour management and is offered on a universal basis. As a result it may be better placed to improve health and educational outcomes. Developed in the UK voluntary sector, FLNP is popular with practitioners, has impressed policy makers throughout the UK, has been found to be effective in before/after and qualitative studies, but lacks a randomised controlled trial (RCT) evidence base.Methods/DesignA multi-centre, investigator blind, randomised controlled trial of the FLNP with a target sample of 288 south Wales families who have a child aged 2-4 yrs living in or near to Flying Start/Sure Start areas. Changes in parenting, parent child relations and parent and child wellbeing are assessed with validated measures immediately and at 6 months post intervention. Economic components include cost consequences and cost utility analyses based on parental ranking of states of quality of life. Attendance and completion rates and fidelity to the FLNP course delivery are assessed. A nested qualitative study will assess reasons for participation and non-participation and the perceived value of the programme to families. By the end of May 2010, 287 families have been recruited into the trial across four areas of south Wales. Recruitment has not met the planned timescales with barriers including professional anxiety about families entering the control arm of the trial, family concern about video and audio recording, programme facilitator concern about the recording of FLNP sessions for fidelity purposes and delays due to the new UK research governance procedures.DiscussionWhilst there are strong theoretical arguments to support universal provision of parenting programmes, few universal programmes have been subjected to randomised controlled trials. In this paper we describe a RCT protocol with quantitative and qualitative outcome measures and an economic evaluation designed to provide clear evidence with regard to effectiveness and costs. We describe challenges implementing the protocol and how we are addressing these.Trial RegistrationCurrent Controlled Trials ISRCTN13919732

Question 1 Do lycra garments improve function and movement in children with cerebral palsy

The mother of a 5-year-old boy with athetoid cerebral palsy complains of difficulties putting his Lycra suit on each day. She is keen to know if it actually helps improve his function and movement. STRUCTURED CLINICAL QUESTION In children with cerebral palsy (population), do Lycra garments (intervention) improve function and posture (outcome)? SEARCH STRATEGY The search was performed in October 2009.