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
Aims
8.8 million children under the age of 5 die worldwide each year and neonatal mortality contributes 4 million of these deaths. 99% of neonatal deaths occur in low and middle income countries. Identifying clinical signs which indicate severe illness in this age group is vital so that infants requiring urgent hospital referral and treatment are detected early. The WHO Integrated Management of Childhood Illness (IMCI) divides children into three age groups: 0–6 days, 7–59 days and 2–59 months. Current guidelines for infants less than 1 week of age are based on a small pool of evidence. This review was conducted focusing on all infants less than 2 months of age to help provide evidence for a referral checklist for sick neonates less than 1 week of age and allow existing IMCI guidelines to be improved.
Methods
Electronic databases and relevant websites were searched using a specified search strategy. Citations which were eligible focused on clinical signs indicating severe illness in infants less than 2 months of age living in resource poor countries. Relevant papers were critically appraised and data was analysed.
Results
10 full text articles were applicable to the research question and predefined inclusion criteria. All studies were prospective cohorts, two of which were multicentre. Studies predominately focused on ‘severe illness’ as an outcome measure but mortality and infection were also used. Key clinical predictors of severe illness in infants less than 2 months of age were found to be: difficulty feeding, movement only when stimulated, temperature <35.5°C or ≥37.5°C, respiratory rate ≥60/min, severe chest indrawing and history of convulsions.
Conclusions
An algorithm to identify severe illness could encompass all infants under 2 months of age, providing jaundice is included for those infants in the first week of life. Current IMCI guidelines may be simplified to accommodate these changes. Combining key clinical signs gives a sensitive and specific approach to allow early identification of seriously ill infants. This, used in conjunction with education and improved implementation of algorithms, could help tackle the Millennium Development Goal of reducing childhood mortality by two thirds of the 1990 level by 2015.
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