Astrid Janssens

• PhD
• Professor at University of Southern Denmark

Aim: 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. Method: MEDLINE, Embase, PsycINFO, CINAHL, AMED, and the National Heal...

We will provide an overview of the transition for young people with ADHD from children’s services to adult services by identifying: 1) how many young people with ADHD need a transfer to adult services across the UK and the Republic of Ireland (ROI), 2) factors influencing service use and to identify factors leading to a transition success or failur...

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 onlin...

Background: Health 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...

Background It has been advocated that the development of medical school curricula must be informed by students, doctors in training, educators, employers, other health and social care professionals and patients, families and carers. Patients are widely employed to teach clinical and interpersonal skills, and while recognised as crucial in health ed...

Aims A multidisciplinary group of experts and patients developed the Model for ASsessing the value of Artificial Intelligence (MAS-AI) to ensure an evidence-based and patient-centered approach to introducing artificial intelligence technologies in healthcare. In this article, we share our experiences with meaningfully involving a patient in co-crea...

Background In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopath...

Objective: There is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal though...

Background Older people often have multiple health conditions and therefore extended care needs. The transition from the hospital back to their home requires careful planning. The fragmented healthcare system and rapid discharge from the hospital can result in limited involvement of the older patient in the discharge planning process. We aimed to e...

Background Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire (“We would like to know you”) consisting of 5 questions...

Globally, focus on user involvement in health research has increased substantially. In Denmark, it is still at an early stage with individual researchers being met with increasing demands without having much experience, guidance, or good practices to act upon. We are a group of researchers affiliated with User Perspectives and Community-based Inter...

Background Lolland-Falster Health Study (LOFUS) was a health examination survey that included self-administered questionnaires, clinical examinations, and the collection of biological samples, undertaken in 2016–2020 in a rural, socioeconomically deprived area with the lowest life expectancy in Denmark. The aim of this study was to examine the dete...

Background Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This...

Background Attention deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterized by inattention, hyperactivity and/or impulsivity. Young people with ADHD have poorer educational and social outcomes than their peers. We aimed to better understand educational experiences of young people with ADHD in the UK, and make actionabl...

Background: The Danish public welfare system ensures health care to all citizens and is renowned internationally for keeping digital health registries. The Danish Neonatal Screening Biobank contains blood from the Phenylketonuria-screening (PKU-test) of nearly all infants born in Denmark. The samples are collected in an opt-out design and are avai...

BACKGROUND Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire (“We would like to know you”) consisting of 5 questions...

In this Communication article, we share experiences of collaborating with members of the public during health education. We aim to inspire bachelor, masters and PhD students to engage with patients and the public during their undergraduate, graduate and postgraduate thesis work and to inspire educators to collaborate with patient and public involve...

Aim To inform transitions from child to adult health services, we explored the work and roles parents take in the care of young people with attention‐deficit/hyperactivity disorder (ADHD) aged 14 to 25 years old. Method Using framework thematic analysis, we analysed data collected from 28 semi‐structured interviews with parents of young people wit...

Background The Child and Adolescent Service Intensity Instrument (CASII) is a tool to determine the appropriate level of care placement for a child or adolescent. The CASII links a clinical assessment of the child and its environment with standardized levels of care using a detailed algorithm. It can be used for children aged 6–18 years with psychi...

Background National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority e...

The quality of romantic relationships is associated with mental health and wellbeing throughout the life course. A number of programmes have been developed to support young people in navigating healthy relationships, and a larger role for relationship education was recently formalised in statutory guidance in England. This study aimed to systematic...

Background Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that can persist into adulthood. Young people often stop taking ADHD medication during adolescence despite evidence that continuation would be beneficial. Increasingly, young people are restarting medication in early adulthood suggesting that cessatio...

Strong mutual commitment is typically conceived of as involving a public promise of a life-long bond, but social theorists have posited that external relationship anchors are being replaced with a private meaning of commitment. This narrative analysis of semi-structured interviews with ten White British couples in long-term relationships (15+ years...

Attention-Deficit/Hyperactivity Disorder (ADHD) is a common neurodevelopmental condition. As such most schools, Further Education colleges, vocational training and Higher Education settings will need to support affected children and young people. When young people who require ongoing treatment for ADHD are around 18 years of age, they must transiti...

Social theorists have suggested relationship practice changes such as rising rates of nonmarital cohabitation imply external anchors are lifting with relations become increasingly individualized and fragile. These suppositions are in part based on theories of commitment which have taken conventional characteristics of marriage as a blueprint from w...

An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. The proportion of caregivers ex...

When researchers are interested in the experiences of couples, the mode of interview is typically considered a binary choice between separate individual interviews with each partner, or a joint interview with both partners together. That is, if interview mode is explicitly considered at all. In this article, we illustrate a reflective process under...

Healthcare professionals are socialized into a tacit, professional identity of competences and skills – to save lives, repair trauma and facilitate good and trustful relational care. When severe adverse events happen, healthcare professionals may struggle to accept their own fallibility, and the event may pose a threat to the selfdeclared ‘superior...

Background Attention deficit hyperactivity disorder was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support attention deficit hyperactivity disorder patients who became too old for child services. To our knowledge, this is the first in-depth study of the transition of attention deficit h...

Background Among children aged 6–16, there is a clear association between attention‐deficit/hyperactivity disorder (ADHD) symptoms and academic attainment. We wanted to know whether this association was replicated in younger children. Aims To explore the relationship between children aged 4–8 with probable ADHD and their academic attainment and sc...

Background UK clinical guidelines recommend treatment of attention-deficit hyperactivity disorder (ADHD) in adults by suitably qualified clinical teams. However, young people with ADHD attempting the transition from children's to adults’ services experience considerable difficulties in accessing care. Aims To map the mental health services in the...

Background Approximately 20% of children with attention-deficit hyperactivity disorder (ADHD) experience clinical levels of impairment into adulthood. In the UK, there is a sharp reduction in ADHD drug prescribing over the period of transition from child to adult services, which is higher than expected given estimates of ADHD persistence, and may b...

Background: Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) e...

This paper reviews published research and gray literature on education programmes which aim to teach young people aged between 11 and 18 skills to develop and maintain healthy intimate relationships. Programmes focussing solely on sexual (risky) behaviour, HIV prevention or partner violence were not the focus of this review and thus excluded. Syste...

This study aimed to examine the resumption of attention-deficit hyperactivity disorder (ADHD) prescriptions in early adulthood in young people whose ADHD prescriptions stopped in adolescence. Whilst prescribing studies indicate that the proportion of those with ADHD stopping treatment in late adolescence remains in excess of the proportion expected...

Background: Many young people with Attention Deficit Hyperactivity Disorder (ADHD) have impairing symptoms that persist into adulthood, yet only a minority experience continuity of care into adult life. Despite growing emphasis on the primary care role in ADHD management in NICE ADHD and transition guidance, little is known about GPs' perspectives...

Background The UK National Institute for Health and Care Excellence (NICE) clinical guidelines recommends the following steps in the transition from child to adult services for young people with attention deficit hyperactivity disorder (ADHD): reassessment before and after transition, transition planning, formal meeting between services, and involv...

Background: Health services have not provided adequate support for young people with long term health conditions to transfer from child to adult services. National Institute of Health and Care (NICE) guidance on transition has been issued to address these gaps. However, data are often sparse about the number of young adults who might need to trans...

Background: ADHD affects some individuals throughout their lifespan, yet service provision for adults in the United Kingdom (UK) is patchy. Current methods for mapping health service provision are resource intensive, do not map specialist ADHD teams separately from generic mental health services, and often fail to triangulate government data with...

Background Optimal transition from child to adult services involves continuity, joint care, planning meetings and information transfer; commissioners and service providers therefore need data on how many people require that service. Although attention-deficit hyperactivity disorder (ADHD) frequently persists into adulthood, evidence is limited on t...

Background Perspectives of young people with eating disorders and their parents on helpful aspects of care should be incorporated into evidence-based practice and service design, but data are limited. Aims To explore patient and parent perspectives on positive and negative aspects of care for young people with eating disorders. Method Six online...

Background Adolescent self‐harm is a major public health concern. To date there is a limited evidence‐base for prevention or intervention, particularly within the school setting. To develop effective approaches, it is important to first understand the school context, including existing provision, barriers to implementation, and the acceptability of...

Background In recent years, the difficulty for young people with mental health issues who require a transition to adult services has been highlighted by several studies. In March 2018 the National Institute of Health and Care Excellence (NICE) produced detailed guidelines for the diagnosis and management of attention deficit hyperactivity disorder...

Background Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by hyperactivity, inattention and impulsivity. Up to two thirds of young people with ADHD may experience symptoms into adulthood, yet the limited literature available suggests that many young people with ongoing needs do not transfer from child...

We aimed to evaluate whether mindfulness-based cognitive therapy (MBCT) was feasible and acceptable for young people, their parents and the clinicians working with them; whether a parallel course for parents was a useful addition; and whether attendance at MBCT was associated with improved outcomes. The design was a mixed-method service evaluation...

The authors would like to note an omission of acknowledgements in this paper.

Aims The surveillance study is one stream of the ADHD in transition between children’s services and adult services (CATCh-Us) study and is run in collaboration with the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatry Surveillance System (CAPSS) across the United Kingdom. It aims to quantify the need for young peo...

Background The Child and adolescent Psychiatry Surveillance System(CAPSS) is the British Paediatric Surveillance Unit’s(BPSU’s) baby sibling. It was established in year 2009, and to date has completed more than 6 National studies on children’s mental health, with one more in the field of trnsition in ADHD. Aim 1 st: To dissminate the clinically im...

A collaboration between University of Exeter and Cardiff University funded by GW4 Building Communities Programme Accelerator Fund. This study researches the provision of self-harm prevention and intervention in Secondary Schools. Schools part of the School Health Research Network (SHRN) in Wales and state schools in Devon, including Plymouth, Torba...

Table SI: PROMs (group of questionnaires), the different versions (according to age group, length, or responder), acronyms, and reference citations, including reference citation.

Appendix S1: An example of the search strategy used on Ovid MEDLINE(R), In‐Process & Other Non‐Indexed Citations, and Ovid MEDLINE(R) (1946 to present).

Objective To seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children and young people with neurodisability. To appraise the appropriateness and measurement properties of multidimensional patient reported outcome measures (PROMs) to assess the outcome domains. Met...

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...

To identify generic, multidimensional patient-reported outcome measures (PROMs) for children up to 18 years old and describe their characteristics and content assessed using the International Classification of Functioning, Disability and Health Children and Youth version (ICF-CY). The search strategy, developed by an information specialist, include...

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 b...

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting. Background The identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large numb...

To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents. 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 t...

This manuscript provides an overview of the existing literature on the prevalence of eating problems and eating disorders of children from 0 to 6 years old. Eating problems are considered from a biopsycho-social view, given that biological, psychological and social factors are involved in the development of eating problems and eating disorders. A s...

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 psyc...

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. A multidisciplinary group of health professionals was recruited through child development teams and professional societies in the UK; several parent...

Background: despite the increasing use of psychotropic medications in children, few data regarding their efficacy and safety are available. An urgent need does exist for a clinical instrument regarding this subject. Objective: developing a safety protocol for the most frequently used psychopharmacotherapies in children. Method: a thorough literatur...

Background: A substantial increase in the use of second-generation or atypical antipsychotics in young persons has occurred. This use has been associated in children and adolescents with metabolic disturbances. Objective: This article reviews the literature concerning the metabolic side effects of second-generation antipsychotics based on the conse...

In the following article CAPRI presents its current research projects. The team leaders were asked to present and summarize the project they had been working on. The fields in which research was conducted are: Child and Adolescent Psychiatry, Cognitive and Psychomotor Dysfunctions in Schizophrenia, fMRI in Schizophrenia, Cognitive and Psychomotor D...

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 an...

Parents often go to their general practitioner (GP), worrying about their child's functioning or with questions about parenting. Teaching positive strategies to parents is a substantial aspect to prevent mental health problems in children. The Positive Parenting Program (Triple P Program) is an evidence based intervention, which focuses on teaching...

De plus en plus d’enfants et d’adolescents ont besoin d’une aide psychiatrique en urgence. La meilleure manière de fournir cette aide est d’utiliser une approche intégrée sans créer des structures séparées, estime le Centre fédéral d’expertise des soins de santé (KCE), dans une étude menée en collaboration avec l’Université d’Anvers. La Belgique au...

Steeds meer kinderen en jongeren hebben dringende psychiatrische hulp nodig. Deze hulp kan het beste worden gegeven via een geïntegreerde aanpak,en niet door aparte afdelingen, stelt het Federaal Kenniscentrum voor de Gezondheidszorg (KCE). Het KCE onderzocht samen met Universiteit Antwerpen de problematiek. België heeft behoefte aan 15 geïntegreer...

Whilst children in child welfare suffer more psychopathology than their community peers, only a small percentage of them actually receive mental health care. Previous literature suggested that all children entering child welfare should be screened. This study evaluated whether the Strengths and Difficulties Questionnaire (SDQ) could be used for thi...

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 welfar...

To compare the prevalence of psychopathology in infants born preterm with matched full-term infants at the corrected age of 1 year. Between June 2003 and April 2005, a case-control longitudinal cohort study was conducted at the neonatal unit of the University Hospital of Antwerp, Belgium. We prospectively enrolled 123 live-born infants between 25 a...

Whilst children in child welfare suffer more psychopathology than their community peers, only a small percentage of them actually receive mental health care. Previous literature suggested that all children entering child welfare should be screened. This study evaluated whether the Strengths and Difficulties Questionnaire (SDQ) could be used for thi...