Developing the FEEDS toolkit of parent-delivered interventions for eating, drinking and swallowing difficulties in young children with neurodisability: findings from a Delphi survey and stakeholder consultation workshops.

Background: Young children with neurodisability commonly experience eating, drinking and swallowing difficulties (EDSD). Little is documented about which interventions and outcomes are most appropriate for such children. We aimed to seek consensus between parents of children with neurodisability and health professionals on the appropriate interventions and outcomes to inform future clinical developments and research studies.

Parent-delivered interventions used at home to improve eating, drinking and swallowing in children with neurodisability: the FEEDS mixed-methods study.

Background: Eating, drinking and swallowing difficulties are common in young children with neurodisability. These difficulties may lead to inadequate calorie intake, which affects a child's nutrition, growth and general physical health.

Objective: To examine which interventions are available that can be delivered at home by parents to improve eating, drinking and swallowing in young children with neurodisability and are suitable for investigation in pragmatic trials.

Did previous involvement in research affect recruitment of young people with cerebral palsy to a longitudinal study of transitional health care?

Objective: To assess whether being contacted about or participating in previous research and method of approaching potential participants affected recruitment to a transition study from child to adult healthcare services of young people with cerebral palsy (CP).

Design And Methods: Young people with CP aged 14-18 years without severe intellectual impairment were identified from regional registers of CP in Northern Ireland and the North of England. χ and Mann-Whitney U tests were used to assess differences in CP and sociodemographic characteristics between those recruited and those who refused.

Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence.

Aim: To examine the evolution of child-parent discrepancy in reporting quality of life (QoL) between childhood and adolescence in children with cerebral palsy (CP) and to investigate potential factors associated with such a discrepancy.

Method: We used data from the SPARCLE (Study of PARticipation of Children with CP Living in Europe) study, a population-based cohort study of children with CP, aged 8 to 12 years at baseline (in 2004-2005), in nine European centres, who were followed up at the age of 13 to 17 years. The KIDSCREEN-52 Quality of Life measure was used at baseline and follow-up; 354 child-parent dyads out of 500 eligible dyads were followed up (201 males, 153 females).

Quality-of-Life Trajectories in Adolescent and Young Adult versus Older Adult Allogeneic Hematopoietic Cell Transplantation Recipients.

Hematopoietic cell transplantation (HCT) is physically and psychologically challenging, potentially exposing patients to quality-of-life (QoL) impairments. Adolescent and young adults (AYAs, aged 15 to 39 years) are a vulnerable cohort facing multiple hurdles due to dynamic changes in several aspects of their lives. The AYA population may be particularly prone to QoL issues during HCT.

Facilitating transition of young people with long-term health conditions from children's to adults' healthcare services - implications of a 5-year research programme.

Background: During transition from children's to adults' healthcare, young adults with long-term conditions may show delays in psychosocial development compared to their peers without long-term conditions, and deterioration of their conditions' medical control.

Methods: This paper integrates the findings, already published in 10 separate papers, of a 5-year transition research programme.

Implications: There is an important role for funders (commissioners) of adults' services to fund transitional healthcare, in addition to funders of children's services who currently take responsibility.

Standing frames for children with cerebral palsy: a mixed-methods feasibility study.

Background: Standing frames are recommended as part of postural management for young people with cerebral palsy (CP) Gross Motor Function Classification System (GMFCS) level IV or V. They may have a variety of benefits, including improving bone mineral density, gastrointestinal function and social participation. The NHS needs to know if these benefits are real, given the cost implications of use and the reported negative effects (e.

A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions.

Background: Most evidence about what works in transitional care comes from small studies in single clinical specialties. We tested the hypothesis that exposures to nine recommended features of transitional healthcare were associated with better outcomes for young people with long-term conditions during transition from child-centred to adult-oriented health services.

Methods: This is a longitudinal, observational cohort study in UK secondary care including 374 young people, aged 14-18.

A longitudinal, observational study examining the relationships of patient satisfaction with services and mental well-being to their clinical course in young people with Type 1 diabetes mellitus during transition from child to adult health services.

Aim: We hypothesized that participant well-being and satisfaction with services would be positively associated with a satisfactory clinical course during transition from child to adult health care.

Methods: Some 150 young people with Type 1 diabetes mellitus from five diabetes units in England were recruited to a longitudinal study of transition. Each young person was visited at home four times by a research assistant; each visit was 1 year apart.

How well do services for young people with long term conditions deliver features proposed to improve transition?

Background: For young people with long-term conditions, transition from child to adult-oriented health services is a critical period which, if not managed well, may lead to poor outcomes. There are features of transition services which guidance and research suggest improve outcomes. We studied nine such features, calling them 'proposed beneficial features': age-banded clinic; meet adult team before transfer; promotion of health self-efficacy; written transition plan; appropriate parent involvement; key worker; coordinated team; holistic life-skills training; transition manager for clinical team.

Falling through the gaps: exploring the role of integrated commissioning in improving transition from children's to adults' services for young people with long-term health conditions in England.

Objectives To explore the role of integrated commissioning in improving the transition of young people with long-term conditions from child to adult services. We aimed to identify organizational and policy gaps around transition services and provide recommendations for integrated commissioning practice. Methods Semi-structured in-depth interviews were conducted with two groups of participants: (1) twenty-four stakeholders involved in the commissioning and provision of transition services for young people with long-term conditions in two regions in England; (2) five professionals with national roles in relation to planning for transition.

Are the health needs of young people with cerebral palsy met during transition from child to adult health care?

Background: The transition from child to adult health care is a particular challenge for young people with cerebral palsy, who have a range of needs. The measurement of reported needs, and in particular unmet needs, is one means to assess the effectiveness of services.

Methods: We recruited 106 young people with cerebral palsy, before transfer from child services, along with their parents to a 3-year longitudinal study.

Drooling Reduction Intervention randomised trial (DRI): comparing the efficacy and acceptability of hyoscine patches and glycopyrronium liquid on drooling in children with neurodisability.

Objective: Investigate whether hyoscine patch or glycopyrronium liquid is more effective and acceptable to treat drooling in children with neurodisability.

Design: Multicentre, single-blind, randomised controlled trial.

Setting: Recruitment through neurodisability teams; treatment by parents.

Understanding frames: A qualitative study of young people's experiences of using standing frames as part of postural management for cerebral palsy.

Background: Consensus opinion supports standing frame use as part of postural management for nonambulant young people with cerebral palsy. Although the rationale for standing frame use and the associated challenges have been described, little attention has been given to the users' experiences. The aim of the current study was to explore young people's positive and negative experiences, and attitudes regarding standing frame use.

What constitutes successful commissioning of transition from children's to adults' services for young people with long-term conditions and what are the challenges? An interview study.

Objective: We explored what constitutes successful commissioning for transition and what challenges are associated with this. We aimed: (1) to identify explicit and implicit organisational structures, processes and relationships that drive commissioning around transition; (2) to identify challenges faced by commissioners; and (3) to develop a conceptual model.

Design: A qualitative interview study.

How available to European children and young people with cerebral palsy are features of their environment that they need?

Background: The UN Convention on the Rights of Persons with Disabilities requires accessibility to the physical and social environments. However, individuals with cerebral palsy (CP) have many difficulties in accessing the environment they need for functional independence and social inclusion.

Aims: To examine the availability of environmental features which children with CP need for optimal participation, and whether availability changed for them between ages 8-12 and 13-17 years.

Understanding frames: A UK survey of parents and professionals regarding the use of standing frames for children with cerebral palsy.

Background: Standing frames are used for children with cerebral palsy (CP). They may improve body structure and function (e.g.

Predictors of parent-reported quality of life of adolescents with cerebral palsy: A longitudinal study.

Aim: Parent-reporting is needed to examine Quality of Life (QoL) of children with cerebral palsy (CP) across all severities. This study examines whether QoL changes between childhood and adolescence, and what predicts adolescent QoL.

Method: SPARCLE is a European cohort study of children with CP, randomly sampled from population databases.

Views of Young People With Chronic Conditions on Transition From Pediatric to Adult Health Services.

Purpose: This study sought to identify and describe the views of young people with chronic conditions about the transition from pediatric to adult services.

Methods: Q methodology was used to identify young people's views on transition. A set of 39 statements about transition was developed from an existing literature review and refined in consultation with local groups of young people.

Cerebral palsy.

Cerebral palsy is the most common cause of childhood-onset, lifelong physical disability in most countries, affecting about 1 in 500 neonates with an estimated prevalence of 17 million people worldwide. Cerebral palsy is not a disease entity in the traditional sense but a clinical description of children who share features of a non-progressive brain injury or lesion acquired during the antenatal, perinatal or early postnatal period. The clinical manifestations of cerebral palsy vary greatly in the type of movement disorder, the degree of functional ability and limitation and the affected parts of the body.

Characteristics of young people with long term conditions close to transfer to adult health services.

Background: For many young people with long term conditions (LTC), transferring from paediatric to adult health services can be difficult and outcomes are often reported to be poor. We report the characteristics and representativeness of three groups of young people with LTCs as they approach transfer to adult services: those with autism spectrum disorder with additional mental health problems (ASD); cerebral palsy (CP); or diabetes.

Methods: Young people aged 14 years-18 years 11 months with ASD, or those with diabetes were identified from children's services and those with CP from population databases.

Classification systems of communication for use in epidemiological surveillance of children with cerebral palsy.

Aim: Children with cerebral palsy (CP) often experience communication difficulties. We aimed to identify a classification system for communication of children with CP suitable for epidemiological surveillance.

Method: Systems to classify the communication of children with CP were identified.