Outcomes from a community speech and language therapy service treatment waiting list: The natural history of 525 children with identified speech and language needs.

BACKGROUND: Understanding the natural history of developmental speech and language impairments can support the selection of children whose difficulties are persistent rather than transitory. It can also provide information against which the effectiveness of intervention can be evaluated. However, natural history data are difficult to collect ethically. Furthermore, as soon as an impairment is identified, the behaviour of those around changes, thus creating some level of intervention. Longitudinal cohort studies, where intervention is minimal, or the control arm of randomized trials have provided the best evidence. However, occasional opportunities arise where service waiting lists can provide data about the progress of children who have not received intervention. This natural history study arose within an ethnically diverse, community paediatric speech and language therapy service in the UK where levels of social disadvantage are high. AIMS: To identify (1) the characteristics of the children who attended initial assessment and were selected for treatment; (2) the differences between children who did and did not attend reassessment; and (3) the factors associated with outcomes. METHODS & PROCEDURES: A cohort of 545 children were referred and assessed as in need of therapy. Due to resource constraints, intervention was not available for an average of 12 months. Children were invited to attend for a reassessment of need. Initial and follow-up assessments were conducted by experienced clinicians using service guidelines and the Therapy Outcomes Measures Impairment Scale (TOM-I). Descriptive and multivariate regression analyses examined child outcomes for changes in communication impairment, demographic factors and length of wait. OUTCOMES & RESULTS: At initial assessment, 55% of children presented with severe and profound communication impairments. Children offered appointments at clinics in areas of high social disadvantage were less likely to attend reassessment. By reassessment, 54% of children showed spontaneous improvement (mean TOM-I rating change = 0.58). However, 83% were still judged to require therapy. Approximately 20% of children changed their diagnostic category. Age and impairment severity at initial assessment were the best predictors of continuing requirement for input. CONCLUSIONS & IMPLICATIONS: Although children do make spontaneous progress post-assessment and without intervention, it is likely that the majority will continue to be assigned case status by a Speech and Language Therapist. However, when evaluating the effectiveness of interventions, clinicians need to factor in the progress that a proportion of the caseload will make spontaneously. Services should be mindful that a lengthy wait may disproportionately impact children who already face health and educational inequalities. WHAT THIS PAPER ADDS: What is already known on the subject Data from longitudinal cohorts (where intervention has been minimal) and the no treatment control arms of randomized controlled trials have provided the best evidence of the natural progression of speech and language impairments in children. These studies provide a varied rate of resolution and progress depending on the case definitions and measurements used. What this study adds to existing knowledge Uniquely, this study has evaluated the natural history of a large cohort of children who had been waiting for treatment for up to 18 months. Data showed that, over a period of waiting for intervention, the majority of those identified as a case by a Speech and Language Therapist remained a case. Using the TOM, on average children in the cohort made just over half a rating point progress during their waiting period. What are the potential or actual clinical implications of this work? The maintenance of treatment waiting lists is probably an unhelpful service strategy for two reasons: first, the case status of the majority of the children is unlikely to change whilst they await intervention and thus children and their families are subjected to further limbo waiting time; second, the dropout from the waiting list may disproportionately affect children who are offered appointments in clinics where there are higher levels of social disadvantage, thus exacerbating inequalities in the system. Currently, a suggested reasonable outcome of intervention is a 0.5 rating change in one domain of TOMs. Study findings suggest this is insufficiently stringent for a paediatric community clinic caseload. There is a need to evaluate spontaneous improvement which may occur in other TOM domains (i.e., Activity, Participation and Wellbeing) and to agree an appropriate change metric for a community paediatric caseload.

Hospitalisation after birth of infants: cross sectional analysis of potentially avoidable admissions across England using hospital episode statistics.

BACKGROUND: Admissions of infants in England have increased substantially but there is little evidence whether this is across the first year or predominately in neonates; and for all or for specific causes. We aimed to characterise this increase, especially those admissions that may be avoidable in the context of postnatal care provision. METHODS: A cross sectional analysis of 1,387,677 infants up to age one admitted to English hospitals between April 2008 and April 2014 using Hospital Episode Statistics and live birth denominators for England from Office for National Statistics. Potentially avoidable conditions were defined through a staged process with a panel. RESULTS: The rate of hospital admission in the first year of life for physiological jaundice, feeding difficulties and gastroenteritis, the three conditions identified as potentially preventable in the context of postnatal care provision, increased by 39% (39.55 to 55.33 per 1000 live births) relative to an overall increase of 6% (334.97 to 354.55 per 1000 live births). Over the first year the biggest increase in admissions occurred in the first 0-6 days (RR 1.26, 95% CI 1.24 to 1.29) and 85% of the increase (12.36 to 18.23 per 1000 live births) in this period was for the three potentially preventable conditions. CONCLUSIONS: Most of the increase in infant hospital admissions was in the early neonatal period, the great majority being accounted for by three potentially avoidable conditions especially jaundice and feeding difficulties. This may indicate missed opportunities within the postnatal care pathway and given the enormous NHS cost and parental distress from hospital admission of infants, requires urgent attention.

A Comparison of Two Methods for Recruiting Children with an Intellectual Disability.

BACKGROUND: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. METHODS: Questionnaire completion rates are compared between (i) participants being approached in child development centre waiting rooms and (ii), one year later, the same participants being invited to take part by phone, email and/or post. RESULTS: The face-to-face recruitment method resulted in a better recruitment rate (58.5% compared to 18.5%) and a larger sample (n = 438) than the telephone/email/post sample (n = 40). It also required less hours of researcher time per completed questionnaire. CONCLUSIONS: In-line with previous research, recruitment of participants with intellectual disabilities (or their parents/carers) requires significant time and resources to get a sample of an acceptable size.

The impact of training non-physician clinicians in Malawi on maternal and perinatal mortality: a cluster randomised controlled evaluation of the enhancing training and appropriate technologies for mothers and babies in Africa (ETATMBA) project.

BACKGROUND: Maternal mortality in much of sub-Saharan Africa is very high whereas there has been a steady decline in over the past 60 years in Europe. Perinatal mortality is 12 times higher than maternal mortality accounting for about 7 million neonatal deaths; many of these in sub-Saharan countries. Many of these deaths are preventable. Countries, like Malawi, do not have the resources nor highly trained medical specialists using complex technologies within their healthcare system. Much of the burden falls on healthcare staff other than doctors including non-physician clinicians (NPCs) such as clinical officers, midwives and community health-workers. The aim of this trial is to evaluate a project which is training NPCs as advanced leaders by providing them with skills and knowledge in advanced neonatal and obstetric care. Training that will hopefully be cascaded to their colleagues (other NPCs, midwives, nurses). METHODS/DESIGN: This is a cluster randomised controlled trial with the unit of randomisation being the 14 districts of central and northern Malawi (one large district was divided into two giving an overall total of 15). Eight districts will be randomly allocated the intervention. Within these eight districts 50 NPCs will be selected and will be enrolled on the training programme (the intervention). Primary outcome will be maternal and perinatal (defined as until discharge from health facility) mortality. Data will be harvested from all facilities in both intervention and control districts for the lifetime of the project (3-4 years) and comparisons made. In addition a process evaluation using both quantitative and qualitative (e.g. interviews) will be undertaken to evaluate the intervention implementation. DISCUSSION: Education and training of NPCs is a key to improving healthcare for mothers and babies in countries like Malawi. Some of the challenges faced are discussed as are the potential limitations. It is hoped that the findings from this trial will lead to a sustainable improvement in healthcare and workforce development and training. TRIAL REGISTRATION: ISRCTN63294155.

Nurturing children's development through healthy eating and active living: Time for policies to support effective interventions in the context of responsive emotional support and early learning.

Fostering the growth, development, health, and wellbeing of children is a global priority. The early childhood period presents a critical window to influence lifelong trajectories, however urgent multisectoral action is needed to ensure that families are adequately supported to nurture their children's growth and development. With a shared vision to give every child the best start in life, thus helping them reach their full developmental potential, we have formed the International Healthy Eating Active Living Matters (HEALing Matters) Alliance. Together, we form a global network of academics and practitioners working across child health and development, and who are dedicated to improving health equity for children and their families. Our goal is to ensure that all families are free from structural inequality and oppression and are empowered to nurture their children's growth and development through healthy eating and physical activity within the context of responsive emotional support, safety and security, and opportunities for early learning. To date, there have been disparate approaches to promoting these objectives across the health, community service, and education sectors. The crucial importance of our collective work is to bring these priorities for early childhood together through multisectoral interventions, and in so doing tackle head on siloed approaches. In this Policy paper, we draw upon extensive research and call for collective action to promote equity and foster positive developmental trajectories for all children. We call for the delivery of evidence-based programs, policies, and services that are co-designed to meet the needs of all children and families and address structural and systemic inequalities. Moving beyond the "what" is needed to foster the best start to life for all children, we provide recommendations of "how" we can do this. Such collective impact will facilitate intergenerational progression that builds human capital in future generations.

Anterior or posterior walkers for children with cerebral palsy? A systematic review.

OBJECTIVE: To review the literature comparing use of anterior and posterior walkers (PW's) by children with cerebral palsy (CP) to determine which walker type is preferable. METHODS: Electronic databases were searched using pre-defined terms by two independent reviewers. Reference lists of included studies were hand searched. Studies published between 1985 and 2016 comparing use of anterior and PW's by children with CP were included. All study designs and outcomes were accepted. Risk of bias was assessed using the "Quality assessment standard for a cross-over study". Quality of evidence was evaluated using GRADE. RESULTS: Six studies were analysed. All studies had small sample sizes. A total of 4/6 studies were randomized. A total of 4/6 had high risk of bias. Outcomes included velocity, pelvic tilt, hip flexion, knee flexion, step length, stride length, cadence, double stance time, oxygen cost and participant/parental preference. Velocity, trunk flexion/pelvic tilt, and stability may be improved by using a PW, however, GRADE quality was very low for all outcomes and there was heterogeneity between studies. The majority of participants and parents preferred the PW. CONCLUSIONS: Heterogeneity and low quality of existing evidence prevented recommendation of one walker type. Well-designed studies with adequate power are needed to inform clinical recommendations. Implications for rehabilitation Clinical recommendations cannot be made for whether anterior or posterior walkers are preferable for children with cerebral palsy based on the existing evidence. Velocity, trunk flexion/pelvic tilt, and stability may be improved by using a posterior walker. The majority of walking aid users and their parents preferred posterior walkers. Adequately powered studies designed to minimize bias are needed.

Up-skilling associate clinicians in Malawi in emergency obstetric, neonatal care and clinical leadership: the ETATMBA cluster randomised controlled trial.

BACKGROUND: The ETATMBA (Enhancing Training And Technology for Mothers and Babies in Africa) project-trained associate clinicians (ACs/clinical officers) as advanced clinical leaders in emergency obstetric and neonatal care. This trial aimed to evaluate the impact of training on obstetric health outcomes in Malawi. METHOD: A cluster randomised controlled trial with 14 districts of Malawi (8 intervention, 6 control) as units of randomisation. Intervention districts housed the 46 ACs who received the training programme. The primary outcome was district (health facility-based) perinatal mortality rates. Secondary outcomes included maternal mortality ratios, neonatal mortality rate, obstetric and birth variables. The study period was 2011-2013. Mortality rates/ratios were examined using an interrupted time series (ITS) to identify trends over time. RESULTS: The ITS reveals an improving trend in perinatal mortality across both groups, but better in the control group (intervention, effect -3.58, SE 2.65, CI (-9.85 to 2.69), p=0.20; control, effect -17.79, SE 6.83, CI (-33.95 to -1.64), p=0.03). Maternal mortality ratios are seen to have improved in intervention districts while worsening in the control districts (intervention, effect -38.11, SE 50.30, CI (-157.06 to 80.84), p=0.47; control, effect 11.55, SE 87.72, CI (-195.87 to 218.98), p=0.90). There was a 31% drop in neonatal mortality rate in intervention districts while in control districts, the rate rises by 2%. There are no significant differences in the other secondary outcomes. CONCLUSIONS: This is one of the first randomised studies looking at the effect of structured training on health outcomes in this setting. Notwithstanding a number of limitations, this study suggests that up-skilling this cadre is possible, and could impact positively on health outcomes. TRIAL REGISTRATION NUMBER: ISRCTN63294155; Results.

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 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. 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.