Astrid Janssens

Towards a definition of neurodisability: a Delphi survey

The aim of this study was to develop, systematically, a consensus‐based definition for ‘neurodisability’ that is meaningful to health professionals and parents of children with neurological conditions.

Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents

Objectives To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents. Design Qualitative research incorporating a thematic analysis of the data supported by the Framework Approach; the International Classification of Functioning, Disability and Health (ICF) provided a theoretical foundation. Setting The study was conducted in community settings. Participants Participants were 54 children and young people with neurodisability: 50 participated in focus groups, and 4 in interviews; 53 parents participated: 47 in focus groups and 6 in interviews. Children/young people and parents were recruited through different networks, and were not related. Results Children/young people and parents viewed health outcomes as inter-related. Achievement in some outcomes appeared valued to the extent that it enabled or supported more valued domains of health. Health outcomes prioritised by both young people and parents were: communication, mobility, pain, self-care, temperament, interpersonal relationships and interactions, community and social life, emotional well-being and gaining independence/future aspirations. Parents also highlighted their childs sleep, behaviour and/or safety. Conclusions Those responsible for health services for children/young people with neurodisability should take account of the aspects of health identified by families. The aspects of health identified in this study provide a basis for selecting appropriate health indicators and outcome measures.

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

Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures

BackgroundHealth services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients’ priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties.The aim of this study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains.MethodsRelevant outcomes were identified from (i) qualitative research with children and young people with neurodisability and parent carers, (ii) Delphi survey with health professionals, and (iii) systematic review of PROMs. The International Classification of Functioning Disability and Health provided a common language to code aspects of health. A subset of stakeholders participated in a prioritisation meeting incorporating a Q-sorting task to discuss and rank aspects of health.ResultsA total of 33 pertinent aspects of health were identified. Fifteen stakeholders from the qualitative and Delphi studies participated in the prioritisation meeting: 3 young people, 5 parent carers, and 7 health professionals. Aspects of health that emerged as more important for families and targets for health professionals were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, community and social life, behaviour, toileting and safety. Whilst available PROMs measure many aspects of health in the ICF, no single PROM captures all the key domains prioritised as for children and young people with neurodisability. The paucity of scales for assessing communication was notable.ConclusionsWe propose a core suite of key outcome domains for children with neurodisability that could be used in evaluative research, audit and as health service performance indicators. Future work could appraise domain-specific PROMs for these aspects of health; a single measure assessing the key aspects of health that could be applied across paediatric neurodisability remains to be developed.

A systematic review of generic multidimensional patient-reported outcome measures for children, part II: evaluation of psychometric performance of English-language versions in a general population.

OBJECTIVES The objectives of this systematic review were 1) to identify studies that assess the psychometric performance of the English-language version of 35 generic multidimensional patient-reported outcome measures (PROMs) for children and young people in general populations and evaluate their quality and 2) to summarize the psychometric properties of each PROM. METHODS MEDLINE, EMBASE, and PsycINFO were searched. The methodological quality of the articles was assessed using the COnsensus-based Standards for selection of health Measurement INstruments checklist. For each PROM, extracted evidence of content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision was judged against standardized reference criteria. RESULTS We found no evidence for 14 PROMs. For the remaining 21 PROMs, 90 studies were identified. The methodological quality of most studies was fair. Quality was generally rated higher in more recent studies. Not reporting how missing data were handled was the most common reason for downgrading the quality. None of the 21 PROMs has had all psychometric properties evaluated; data on construct validity and internal consistency were most frequently reported. CONCLUSIONS Overall, consistent positive findings for at least five psychometric properties were found for Child Health and Illness Profile, Healthy Pathways, KIDSCREEN, and Multi-dimensional Student Life Satisfaction Scale. None of the PROMs had been evaluated for responsiveness to detect change in general populations. Further well-designed studies with transparent reporting of methods and results are required.

Emergency psychiatric care for children and adolescents: a literature review.

Objectives Over the years, increasing numbers of children and adolescents have sought help for acute psychiatric problems. The responses to this treatment-seeking behavior are heterogeneous in different settings and nations. This review aimed to provide an answer to the questions “which care should be offered to children and adolescents presenting with a psychiatric emergency or crisis and how should it be organized.” Methods We committed a literature review to find out if any recommendations can be made regarding the organization of emergency care for children and adolescents with acute mental health problems. Results The lack of a clear definition of emergencies or urgencies hampered this review; we note the differences between adult and child or adolescent psychiatry. The theoretical models of care found in the literature are built up from several process and structural components, which we describe in greater detail. Furthermore, we review the main service delivery models that exist for children and adolescents. Conclusions Currently, emergency psychiatric care for children and adolescents is practiced within a wide range of care models. There is no consensus on recommended care or recommended setting for this population. More research is needed to make exact recommendations on the standardization of psychiatric care for young people in emergency settings.

Psychopathology among children and adolescents in child welfare: a comparison across different types of placement in Flanders, Belgium

Background Children and adolescents in child welfare are characterised by a high rate of psychopathology. However, prevalence estimates vary greatly, and comparisons between studies are limited owing to different target populations, measurement tools and how results are presented. In addition, little is known about the situation of children under child welfare care still living with their parents. Methods The Achenbach System of Empirically Based Assessment and the Strengths and Difficulties Questionnaire used to measure psychopathology, were administered to parent, agency carer and adolescent (if older than 11). Data of 292 children aged 3–17 years (mean age, 12.13 years) with at least one respondent of four types of placement, namely foster care, residential care, day care and home-based care, were included (response rate, 78%). Socioeconomic characteristics and psychopathology were examined across these four types of placement. Results Overall, the proportion of children scoring within the clinical range according to at least one informant was 56% according to the Strengths and Difficulties Questionnaire and 54% according to the Achenbach System of Empirically Based Assessment. Rates were highest among children living at home and significantly lower among children in out-of-home placement, even after correcting for age, income and duration of the ongoing placement. Adolescents scored themselves lower on psychopathology in comparison with their parents and the agency carer. Conclusions The prevalence of psychopathology in this child welfare population was very high; however, the findings were consistent with results obtained in previous studies. The prevalence estimates differed depending on the type of placement: the highest rates were found among children in home-based care, and children in foster care suffered less psychopathology. The findings stress the vulnerable mental status of children in child welfare and the need for additional support for child welfare professionals and children, as well as their parents, especially for those living with their parents.

Conceptualizing collaboration between children's services and child and adolescent psychiatry: A bottom-up process based on a qualitative needs assessment among the professionals

Little is known about the need of professionals of children’s services and child and adolescent psychiatry to collaborate. This study aimed to explore the perception of practitioners of both services with regard to a future collaborative partnership improving the wellbeing of children in children’s services. Eight focus groups were performed and analysed, following the principles of the Grounded Theory. The focus groups revealed that the professionals agree considerably concerning the outlines of the collaboration. They agree upon the primary goal of the partnership, their expected role and tasks. In addition, the partnership should develop in an atmosphere of mutual respect and with the intention to provide the best care for the child. The results of the focus groups are discussed in consideration of a future implementation of interventions on developing best practices at the intersection of children’s services and child and adolescent psychiatry.

Health outcomes for children with neurodisability: what do professionals regard as primary targets?

Aim To identify what aspects of health clinicians target when working with children with neurodisability, and which might be appropriate to assess the performance of health services. Method Health professionals were recruited through child development teams and professional societies in England. Professionals participated in four rounds of an online Delphi survey. Open questions were used to elicit aspects of health; these were coded using the WHO International Classification of Functioning, Disability and Health for Children and Youth. Then, participants were asked to rate their agreement with statements to prioritise outcomes identified. Results Responses to all four rounds were, respectively: 233/276 (84.4%), 232/286 (81.1%), 227/285 (79.6%) and 191/284 (67.3%). The key outcome domains identified were: mental health, confidence/emotional stability, anxiety/attention, sleep, pain, toileting, movement ability, manual ability, acquiring skills, communication, mobility, self-care, recreation and leisure. Participants rated both functioning and well-being in these aspects of health as equally important. Interpretation This Delphi survey identified nine key domains that provide a professional perspective on a core set of outcomes for evaluating services for children and young people with neurodisability.

Measurement properties of multidimensional patient-reported outcome measures in neurodisability: a systematic review of evaluation studies

To identify and appraise the quality of studies that primarily assessed the measurement properties of English language versions of multidimensional patient‐reported outcome measures (PROMs) when evaluated with children with neurodisability, and to summarize this evidence.