In the footstep of the old patient from hospital to home: A qualitative field observation study.

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 explore how older hospitalised patients experienced the transition from hospital to home and how possibilities and constraints in interactions with relevant parties in the transition affected their everyday lives. METHOD: An ethnographic participant observation study including interviews was conducted with 10 older hospitalised patients. The theoretical perspective in the study is critical psychology and data were analysed using the condition-, meaning- and reasoning analysis. RESULTS: Three themes were identified: (1) Lost in transition - the person's ability to act is limited, (2) In transition - the relatives become important, (3) At home - the home transforms into a workplace. CONCLUSION: Lack of involvement becomes a condition for older patients as some struggle to create meaning in their transition, affecting their everyday lives. The patients experienced their relatives as important as they ensured that the HCPs got to know their values and wishes. This knowledge is important for HCPs working closely with older people both at the hospital and at home ensuring active involvement of the older person with respect and acknowledgement of the older person's wishes, needs, resources and vulnerability.

Mothers' Views on the Storage and Usage of Their Children's Biological Material Under the Danish Biobanking Model: A Narrative Approach Using Epistemic Injustice.

OBJECTIVES: To investigate the knowledge and attitudes of mothers living in Denmark on the storage and usage of their children's biological material. The Danish Neonatal Screening Biobank contains blood from the Phenylketonuria-screening test. Legal, ethical, and moral concerns have been raised in several countries of how consent is obtained best in pediatric biobank governance. Research on knowledge and attitudes of Danish parents on the usage of their children's biological material is scarce. METHODS: A coproduced study between a mother and 2 researchers. We analyzed 5 online focus group interviews using Ricoeur's hermeneutical narrative analysis. RESULTS: Mothers have very little knowledge on the storage and usage of their children's biological material. They consider the Phenylketonuria-screening test to be part of a birth package, which leaves very little option of choice. They accept donating the material as a token of appreciation in an act of altruism toward the wider society but are only comfortable supporting Danish research. CONCLUSIONS: An exploration of the communal narrative build in the interviews reveal an overall feeling of duty to help benefit society, an overwhelming trust toward the health system, and epistemic unjust storage information practices.

Parenting roles for young people with attention-deficit/hyperactivity disorder transitioning to adult services.

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 with ADHD to generate a typology and triangulated it against findings from 64 interviews with young people with ADHD. The interviews were carried out as part of a three-strand, interactive mixed-method study. RESULTS: An entourage typology of three parent roles was identified. Parents moved between 'manager' and 'roadie' roles as their child gradually matured. A 'superfan' role was identified which supported young people's positive self-image but may impede withdrawal from the 'manager' role. Continued parental involvement into adulthood reflected a need to maintain the balance of resources required to maintain quality of life for the whole family. INTERPRETATION: This is the first study to explore parental roles in the health care of young people with ADHD. Parents will vary in their capacity to fulfil the identified roles and step back their care as their children reach adulthood. The findings can inform intervention development to support families and transition between services. WHAT THIS PAPER ADDS: Parents move from a 'manager' to 'roadie' role as young people mature. A 'superfan' role supports positive self-image and directed health care work. Continued involvement reflects parental responsibility to juggle wider family needs and resources. Parents differ in capacity to fulfil and move between these roles.

Non-participation in a health examination survey in a rural-provincial area of Denmark - results from the Lolland-Falster Health Study (LOFUS).

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 determinants of non-participation in LOFUS to evaluate the extent to which LOFUS data reflected the general population of the area. METHODS: LOFUS invited randomly selected subjects together with their entire household. As determinants of non-participation, we analyzed age, sex, municipality of residency, citizenship, residency status, socioeconomic status, invitation type, and year of invitation. Relative risk regression was used to estimate the association between determinants and non-participation rate, mutually adjusted for other determinants. RESULTS: In total, 53,313 subjects were invited of whom 18,949 (36%) participated. In the multivariable analysis, men had a 3% higher non-participation rate than women; subjects with citizenship other than Danish had a 3% higher non-participation rate than Danes. In-migrants had 6% higher non-participation than long-term residents. Compared with self-supported subjects aged 30-64, both publicly supported subjects of this age and younger and older subjects had higher non-participation rates: 16%, 16%, and 13%, respectively. Compared with self-supported, long-term residents, publicly supported in-migrants had 23% higher non-participation. CONCLUSIONS: Only about one third of subjects invited to LOFUS participated. Yet, this is a relatively high participation rate compared with other recent health examination surveys in Denmark. Furthermore, there was a relatively flat social gradient in the non-participation rate across the studied determinants.

In transition with attention deficit hyperactivity disorder (ADHD): children's services clinicians' perspectives on the role of information in healthcare transitions for young people with ADHD.

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 experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative analysis explored the role that information plays in the transition from child to adult mental health services for young people with ADHD, from the perspectives of clinicians working in children's services. METHODS: Participants were recruited from National Health Service (NHS) Trusts located across the United Kingdom (UK), with varying service configurations. Twenty-two qualitative interviews were conducted with 15 paediatricians and seven psychiatrists working in child services and supporting young people with ADHD. The Framework Method was used to complete a thematic analysis of data related to the role of information in transitional care. RESULTS: Two themes were identified in relation to the role of information in supporting transition and promoting continuity of care. Information for clinicians; about adult mental health services, the young person and their ADHD, and exchanged between services. Sharing information with young people; about transition processes, self-management, to support service engagement, and tailored to be accessible to young people with ADHD. Clinicians in children's services reported variable access to information. Clear protocols and being able to communicate about ADHD as a long-term condition, were described as having a positive impact on the transition process. CONCLUSIONS: These findings illustrate that clear information on the transition process, and communication of evidence based and up-to-date information on ADHD as a long-term condition are essential components for clinicians supporting transition into adult services. Information exchange can be supported through transition discussions with young people, and joint meetings between services Discussions should be accompanied by accessible resources for young people and parents/carers such as leaflets and websites. Further efforts should be focussed on enabling clinicians to provide timely and appropriate information to young people with ADHD to support transition.

Why young people stop taking their attention deficit hyperactivity disorder medication: A thematic analysis of interviews with young people.

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 cessation was premature. In this paper we explore the reasons given by young people for discontinuing ADHD medication. METHODS: Qualitative data from the Children and Adolescents with ADHD in Transition between Children's and Adult Services (CATCh-uS) project was analysed to look for reasons for stopping medication. Semi-structured interviews with three groups of young people were analysed using thematic and framework analysis; this included young people prior to transition (n = 21); young people that had successfully transitioned to adult services (n = 22); and young people who left children's services prior to transition but re-entered adult services later (n = 21). RESULTS: Reasons given by young people for stopping ADHD medication included the following: the perceived balance between benefits and adverse effects of medication; perceptions of ADHD as a childhood or educational disorder; life circumstance of the young person and challenges young people faced in accessing services. CONCLUSIONS: A multidimensional approach is needed to address discontinuation of ADHD medication in order to improve the long-term prospects and quality of life for these young people. Possible approaches include access to non-pharmacological treatments and improved psychoeducation. As many reasons given by young people are not unique to ADHD, these findings are also of relevance to medication adherence in other chronic childhood conditions.

Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review.

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 experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.

Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study.

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 these transitions. AIMS: To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and to describe the proportion that experienced optimal transition. METHOD: Surveillance over 12 months using the British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System, including baseline notification and follow-up questionnaires. RESULTS: Questionnaire response was 79% at baseline and 82% at follow-up. For those aged 17-19, incident rate (range adjusted for non-response) of transition need was 202-511 per 100 000 people aged 17-19 per year, with successful transition of 38-96 per 100 000 people aged 17-19 per year. Eligible young people with ADHD were mostly male (77%) with a comorbid condition (62%). Half were referred to specialist adult ADHD and 25% to general adult mental health services; 64% had referral accepted but only 22% attended a first appointment. Only 6% met optimal transition criteria. CONCLUSIONS: As inclusion criteria required participants to be on medication, these estimates represent the lower limit of the transition need. Two critical points were apparent: referral acceptance and first appointment attendance. The low rate of successful transition and limited guideline adherence indicates significant need for commissioners and service providers to improve service transition experiences.

Clinician perspectives on the use of National Institute for Health and Care Excellence guidelines for the process of transition in Attention Deficit Hyperactivity Disorder.

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 involvement from young person and carer, completed by age 18. METHODS: A UK surveillance study asked clinicians to report young people on their caseloads with ADHD in need of transition to adult services in 2016 to support their continued access to medication need. Clinicians reported young people as they aged to within 6 months of the transition boundary, a prospective questionnaire prior to transition asked about intended transition and the use of local transition protocols. A retrospective questionnaire sent 9 months later established which steps recommended by NICE were followed during transition. Clinicians (38) working in child or adult services were interviewed about their experiences of transition and the use of NICE guidelines during transition and were analysed using a framework approach. RESULTS: Information was shared between services in 85% of the 315 identified transition cases. A joint meeting was planned in 16% of cases; joint working before transfer occurred in 10% of cases. Clinicians were aware of NICE guidelines; they had mixed views on whether (local) guidelines or protocols were helpful. The main reason for not following guidelines was workload and resources: "NICE recommends stuff that is miles above what we will ever be able to provide". CONCLUSIONS: Clinicians involved in the transition process of young people with ADHD judged NICE guidelines to be unrealistic given the current limited resources and service organization. More open dialogue is needed for recommendations on service models to bridge the gap between guideline recommendations and what is viewed as feasible and how implementation of guidance is funded, monitored, and prioritized. This may lead to valuable changes in the consultation process, for example, consideration of a layered (gold, standard, and minimal) system for some NICE guidelines.

How to measure the need for transition to adult services among young people with Attention Deficit Hyperactivity Disorder (ADHD): a comparison of surveillance versus case note review methods.

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 transition. Using Attention Deficit Hyperactivity Disorder (ADHD) as an exemplar, this study used an existing surveillance system and a case note review to capture the incidence of the transition process, and compared and contrasted the findings. METHODS: The Child and Adolescent Psychiatry Surveillance System (CAPSS) was used to estimate the incident transition of young people with Attention Deficit Hyperactivity Disorder (ADHD) from child to adult services. This involves consultant child and adolescent psychiatrists from the United Kingdom (UK) and Republic of Ireland (ROI) reporting relevant young people as they are seen in clinics. In parallel, a case note review was conducted using the Maudsley Biomedical Research Centre (BRC) Clinical Records Interactive Search (CRIS). The study period ran for twelve months with a nine month follow up to see how the transition proceeded. RESULTS: CRIS identified 76 cases in the study period, compared to 18 identified using surveillance via CAPSS. Methodological issues were experienced using both methods. Surveillance issues; eligibility criteria confusion, reporting errors, incomplete questionnaires, difficulties contacting clinicians, and surveillance systems do not cover non-doctors and psychiatrists who are not consultants. Case note review issues using CRIS included the need for researchers to interpret clinical notes, the availability and completeness of data in the notes, and data limited to the catchment of one particular mental health trust. CONCLUSIONS: Both methods demonstrate strengths and weaknesses; the combination of both methods in the absence of strong routinely collected data, allowed a more robust estimate of the level of need for service planning and commissioning.

In transition with ADHD: the role of information, in facilitating or impeding young people's transition into adult services.

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) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people. METHODS: Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method. RESULTS: Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision. CONCLUSIONS: Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.

Seven steps to mapping health service provision: lessons learned from mapping services for adults with Attention-Deficit/Hyperactivity Disorder (ADHD) in the UK.

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 accounts from service users and clinicians. Without a national audit that maps adult ADHD provision, it is difficult to quantify current gaps in provision and make the case for change. This paper describes the development of a seven step approach to map adult ADHD service provision in the UK. METHODS: A mapping method was piloted in 2016 and run definitively in 2018. A seven step method was developed: 1. Defining the target service 2. Identifying key informants 3. Designing the survey 4. Data collection 5. Data analysis 6. Communicating findings 7. Hosting/updating the service map. Patients and members of the public (including clinicians and commissioners) were involved with design, data collection and dissemination of findings. RESULTS: Using a broad definition of adult ADHD services resulted in an inclusive list of identified services, and allowed the definition to be narrowed to National Health Service (NHS) funded specialist ADHD services at data analysis, with confidence that few relevant services would be missed. Key informants included patients, carers, a range of health workers, and commissioners. A brief online survey, written using lay terms, appeared acceptable to informants. Emails sent using national organisations' mailing lists were the most effective way to access informants on a large scale. Adaptations to the methodology in 2018 were associated with 64% more responses (2371 vs 1446) collected in 83% less time (5 vs 30 weeks) than the pilot. The 2016 map of adult ADHD services was viewed 13,688 times in 17 weeks, indicating effective communication of findings. CONCLUSION: This seven step pragmatic method was effective for collating and communicating national service data about UK adult ADHD service provision. Patient and public involvement and engagement from partner organisations was crucial throughout. Lessons learned may be transferable to mapping service provision for other health conditions and in other locations.

Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK.

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, which could hamper efforts to improve outcomes for young people leaving children's services. This study aimed to understand GPs' experiences of involvement with this group and explore their views on the roles and responsibilities of primary and secondary care in transition, to inform recommendations for policy and practice. METHOD: Qualitative interview study with GPs across the UK. Semi-structured telephone interviews were carried out with 14 GPs recruited through a linked mapping study, social media, and snowballing; data were analysed using thematic analysis. RESULTS: In the absence of a smooth transition from child to adult services, many GPs became involved 'by default'. GPs reacted by trying to identify suitable specialist services, and were faced with the decision of whether to continue ADHD prescribing. Such decisions were strongly influenced by perceptions that prescribing carried risks, and concerns over responsibility, particularly where specialist services were lacking. Participants described variation in service availability, and some highlighted tensions around how shared care works in practice. CONCLUSION: Implementation of NICE guidance is highly variable, with implications for GPs and patients. Risk and responsibility for primary care ADHD prescribing are central concerns that need to be addressed, as is the inclusion of GPs in a planned transition process.

Resumption of attention-deficit hyperactivity disorder medication in early adulthood: findings from a UK primary care prescribing study.

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 to be symptom free, very few studies have examined patterns of resumption amongst young adults previously prescribed medication. Primary care records from the UK Clinical Practice Research Datalink from 2008 to 2013 were used to examine the outcome of resumption of ADHD prescriptions from age 20 years in a sample of cases with ADHD whose prescriptions stopped aged 14-18 years. A Cox regression model was fitted to explore variables that could theoretically be associated with resumption of prescriptions. Of 1440 cases, 109 (7.6%) had their ADHD prescriptions resumed. Characteristics associated with an increased probability of resumption included female gender, learning disability, referral to adult mental health services, and prescription of antipsychotic medication. In this study, only a small proportion of adolescents who stopped ADHD medication subsequently resumed their prescriptions in primary care. Those that did resume were a more complex group. As many vulnerable individuals with ongoing ADHD symptoms may not have the resources required to surmount the barriers to re-enter services, the implication is that not all those who could benefit from resuming medication are able to do so. The findings raise questions around whether current care models are flexible enough and whether primary care services are adequately supported in managing this group.

Review: Transition from children's to adult services: a review of guidelines and protocols for young people with attention deficit hyperactivity disorder in England.

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 (ADHD), updated from previous versions in 2008 and 2016, which included general recommendations for transition to an adult service. Yet, there is limited research on transition specifically for those with ADHD. This review aims to systematically identify, review and compare guidelines, specifically focussed on transition for young adults with ADHD within England. METHODS: Following the general principles for systematic reviewing as published by the University of York, 10 electronic databases were searched. Further documents were identified through searches of grey literature and additional sources. RESULTS: Sixteen documents were included. Results indicate very limited publically accessible guidelines in England for transition of young people with ADHD. Nearly all identified documents based their recommendations for transition on the existing NICE guidelines. Neurodevelopmental conditions such as ADHD are often encompassed within one overarching health policy rather than an individual policy for each condition. CONCLUSIONS: Guidelines should be available and accessible to the public in order to inform those experiencing transition; adjusting the guidelines to local service context could also be beneficial and would adhere to the NICE recommendations. Further review could examine transition guideline policies for mental health in general to help identify and improve current practice.

Review: Experiences of healthcare transitions for young people with attention deficit hyperactivity disorder: a systematic review of qualitative research.

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 to adult healthcare services. Although worldwide and NICE guidelines recognise the importance of supported transition, evidence suggests for ADHD that this is poorly managed and variable. Little is known about how transition is experienced by those involved. We aimed to synthesise existing peer-reviewed literature to understand views and experiences of young people, carers and clinicians on transitioning between child and adult ADHD services. METHOD: Five databases were searched and all articles published between 2000 and up until January 2017 considered. Four key search areas were targeted; ADHD, Transition, Age and Qualitative Research. Quality appraisal was conducted using Wallace criteria. Findings from included studies were synthesised using thematic analysis. RESULTS: Eight papers, six from the UK and one each from Hong Kong and Italy, were included. Emerging themes centred on difficulties transitioning; hurdles that had to be negotiated, limitations of adult mental health services, inadequate care and the impact of transition difficulties. CONCLUSIONS: Healthcare transition for this group is difficult in the United Kingdom because of multiple challenges in service provision. In addition to recommendations in NICE guidelines, respondents identified a need for better provision of information to young people about adult services and what to expect, greater flexibility around age boundaries and the value of support from specialist adult ADHD services. More research is needed into ADHD healthcare transition experiences, especially in countries outside the United Kingdom, including accounts from carers and clinicians.

Adolescent self-harm prevention and intervention in secondary schools: a survey of staff in England and Wales.

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 different approaches. METHODS: A convenience sample of 222 secondary schools in England and Wales were invited to participate in a survey, with a 68.9% (n = 153) response rate. One member of staff completed the survey on behalf of each school. Participants responded to questions on the existing provision of adolescent self-harm prevention and intervention, barriers to delivery, and future needs. RESULTS: Adolescent self-harm is an important concern for senior management and teachers. However, emotional health and well-being is the primary health priority for schools. Health services, such as Child and Adolescent Mental Health Services, and on-site counselling are the main approaches schools currently use to address adolescent self-harm, with counselling cited as the most useful provision. Fifty-two per cent of schools have received some staff training on adolescent self-harm, although only 22% rated the adequacy of this training as high. Where schools do not have existing provision, respondents stated that they would like staff training, specialist student training, external speakers, posters and assemblies, although the latter four options were infrequently ranked as the most useful approaches. Key barriers to addressing adolescent self-harm were: lack of time in the curriculum; lack of resources; lack of staff training and time; and fear of encouraging self-harm amongst adolescents. CONCLUSIONS: Adolescent self-harm is a priority for schools. Intervention might focus on increasing the availability of training to teaching staff.

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

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 Health Service Economic Evaluation Database were searched. The methodological quality of the papers was assessed using the COnsensus-based Standards for selection of health Measurement INstruments checklist. Evidence of content validity, construct validity, internal consistency, test-retest reliability, proxy reliability, responsiveness, and precision was extracted and judged against standardized reference criteria. RESULTS: We identified 48 studies of mostly fair to good methodological quality: 37 papers for seven generic PROMs (CHIP, CHQ, CQoL, KIDSCREEN, PedsQL, SLSS, and YQOL), seven papers for two chronic-generic PROMs (DISABKIDS and Neuro-QOL), and four papers for three preference-based measures (HUI, EQ-5D-Y, and CHSCS-PS). INTERPRETATION: On the basis of this appraisal, the DISABKIDS appears to have more supportive evidence in samples of children with neurodisability. The overall lack of evidence for responsiveness and measurement error is a concern when using these instruments to measure change, or to interpret the findings of studies in which these PROMs have been used to assess change.

A systematic review of generic multidimensional patient-reported outcome measures for children, part I: descriptive characteristics.

OBJECTIVES: 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). METHODS: The search strategy, developed by an information specialist, included four groups of terms related to "measure," "health," "children and young people," and "psychometric performance." The search was limited to publications from 1992. Five electronic databases and two online-specific PROM databases were searched. Two groups of reviewers independently screened all abstracts for eligible PROMs. Descriptive characteristics of the eligible PROMs were collected, and items and domains of each questionnaire were mapped onto the ICF-CY chapters. RESULTS: We identified 35 PROMs, of which 29 were generic PROMs and 6 were preference-based measures. Many PROMs cover a range of aspects of health; however, social functioning is represented most often. Content covered differs both in which aspects of health are assessed and whether individual questions focus on functioning (what the subject can or does do) and/or well-being (how the subject feels about a certain aspect of his or her health). CONCLUSIONS: A broad variety of PROMs is available to assess children's health. Nevertheless, only a few PROMs can be used across all age ranges to 18 years. When mapping their content on the ICF-CY, it seems that most PROMs exclude at least one major domain, and all conflate aspects of functioning and well-being in the scales.

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.