Shunting for idiopathic normal pressure hydrocephalus.

BACKGROUND: Normal pressure hydrocephalus (NPH) occurs when the brain ventricles expand, causing a triad of gait, cognitive, and urinary impairment. It can occur after a clear brain injury such as trauma, but can also occur without a clear cause (termed idiopathic, or iNPH). Non-randomised studies have shown a benefit from surgically diverting ventricular fluid to an area of lower pressure by cerebrospinal fluid (CSF)-shunting in iNPH, but historically there have been limited randomised controlled trial (RCT) data to confirm this. OBJECTIVES: To determine the effect of CSF-shunting versus no CSF-shunting in people with iNPH and the frequency of adverse effects of CSF-shunting in iNPH. SEARCH METHODS: We searched the Cochrane Dementia and Cognitive Improvement Group's register, Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE (Ovid SP), Embase (Ovid SP), PsycINFO (Ovid SP), CINAHL (EBSCOhost), Web of Science Core Collection (Clarivate), LILACS (BIREME), ClinicalTrials.gov, and the World Health Organization International Clinical Trials Registry Platform on 15 February 2023. SELECTION CRITERIA: We included only RCTs of people who had symptoms of gait, cognitive, or urinary impairment with communicating hydrocephalus (Evans index of > 0.3) and normal CSF pressure. Control groups included those with no CSF shunts or those with CSF shunts that were in 'inactive' mode. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methodological procedures. Where necessary, we contacted study authors requesting data not provided in the papers. We assessed the overall certainty of the evidence using GRADE. MAIN RESULTS: We included four RCTs, of which three were combined in a meta-analysis. The four RCTs included 140 participants (73 with immediate CSF-shunting and 67 controls who had delayed CSF-shunting) with an average age of 75 years. Risk of bias was low in all parallel-group outcomes evaluated apart from gait speed, cognitive function (general cognition and Symbol Digit Test) (some concerns) and adverse events, which were not blind-assessed. CSF-shunting probably improves gait speed at less than six months post-surgery (standardised mean difference (SMD) 0.62, 95% confidence interval (CI) 0.24 to 0.99; 3 studies, 116 participants; moderate-certainty evidence). CSF-shunting may improve qualitative gait function at less than six months post-surgery by an uncertain amount (1 study, 88 participants; low-certainty evidence). CSF-shunting probably results in a large reduction of disability at less than six months post-surgery (risk ratio 2.08, 95% CI 1.31 to 3.31; 3 studies, 118 participants; moderate-certainty evidence). The evidence is very uncertain about the effect of CSF-shunting on cognitive function at less than six months post-CSF-shunt surgery (SMD 0.35, 95% CI -0.04 to 0.74; 2 studies, 104 participants; very low-certainty evidence). The evidence is also very uncertain about the effect of CSF-shunt surgery on adverse events (1 study, 88 participants; very low-certainty evidence). There were no data regarding the effect of CSF-shunting on quality of life. AUTHORS' CONCLUSIONS: We found moderate-certainty evidence that CSF-shunting likely improves gait speed and disability in iNPH in the relative short term. The evidence is very uncertain regarding cognition and adverse events. There were no longer-term RCT data for any of our prespecified outcomes. More studies are required to improve the certainty of these findings. In addition, more information is required regarding patient ethnicity and the effect of CSF-shunting on quality of life.

Professional perspectives on impacts, benefits and disadvantages of changes made to community continence services during the COVID-19 pandemic: findings from the EPICCC-19 national survey.

BACKGROUND: The COVID-19 pandemic required changes to the organisation and delivery of NHS community continence services which assess and treat adults and children experiencing bladder and bowel difficulties. Although strong evidence exists for the physical and mental health benefits, improved quality of life, and health service efficiencies resulting from optimally organised community-based continence services, recent audits identified pre-pandemic pressures on these services. The aim of this study was to explore professional perceptions of changes made to community continence services due to the COVID-19 pandemic and consequent impacts on practice, care provision and patient experience. METHODS: Online survey of 65 community continence services in England. Thematic analysis using constant comparison of open-ended questions. Frequency counts of closed-ended questions. RESULTS: Sixty-five services across 34 Sustainability and Transformation Partnership areas responded to the survey. Use of remote/virtual consultations enabled continuation of continence care but aspects of 'usual' assessment (examinations, tests) could not be completed within a remote assessment, requiring professionals to decide which patients needed subsequent in-person appointments. Remote appointments could increase service capacity due to their time efficiency, were favoured by some patients for their convenience, and could increase access to care for others. However, the limited ability to complete aspects of usual assessment raised concerns that diagnoses could be missed, or inappropriate care initiated. The format also restricted opportunities to identify non-verbal cues that could inform professional interpretation; and made building a therapeutic relationship between professional and patient more challenging. Remote appointments also posed access challenges for some patient groups. A third of participating services had experienced staff redeployment, resulting in long wait times and some patients being left without care; or reported additional caseload, which had delayed care provision for patients with continence issues. Participants perceived continence care to have been deprioritised, and more generally undervalued, and called for greater recognition of the impact of continence care. CONCLUSIONS: Remote appointments offer efficiency and convenience. However, 'in-person' approaches are highly valued for optimum quality, patient-centred continence care, and good team relationships. Failure to restore redeployed continence staff will diminish patient health and quality of life, with associated costs to the NHS.

Interventions to improve continence for children and young people with neurodisability: a national survey of practitioner and family perspectives and experiences.

OBJECTIVE: Describe families' experiences of interventions to improve continence in children and young people with neurodisability, and health professionals' and school and social care staff's perspectives regarding factors affecting intervention use. DESIGN: Four online surveys were developed and advertised to parent carers, young people with neurodisability, health professionals and school and social care staff, via societies, charities, professional contacts, schools, local authorities, and national parent carer and family forums, who shared invitations with their networks. Survey questions explored: difficulties helping children and young people use interventions; acceptability of interventions and waiting times; ease of use and availability of interventions, and facilitators and barriers to improving continence. RESULTS: 1028 parent carers, 26 young people, 352 health professionals and 202 school and social care staff registered to participate. Completed surveys were received from 579 (56.3%) parent carers, 20 (77%) young people, 193 (54.8%) health professionals, and 119 (58.9%) school and social care staff. Common parent carer-reported difficulties in using interventions to help their children and young people to learn to use the toilet included their child's lack of understanding about what was required (reported by 337 of 556 (60.6%) parent carers who completed question) and their child's lack of willingness (343 of 556, 61.7%). Almost all (142 of 156, 91%) health professionals reported lack of funding and resources as barriers to provision of continence services. Many young people (14 of 19, 74%) were unhappy using toilet facilities while out and about. CONCLUSIONS: Perceptions that children lack understanding and willingness, and inadequate facilities impact the implementation of toileting interventions for children and young people with neurodisability. Greater understanding is needed for children to learn developmentally appropriate toileting skills. Further research is recommended around availability and acceptability of interventions to ensure quality of life is unaffected.

Strategies used for childhood chronic functional constipation: the SUCCESS evidence synthesis.

Background: Up to 30% of children have constipation at some stage in their life. Although often short-lived, in one-third of children it progresses to chronic functional constipation, potentially with overflow incontinence. Optimal management strategies remain unclear. Objective: To determine the most effective interventions, and combinations and sequences of interventions, for childhood chronic functional constipation, and understand how they can best be implemented. Methods: Key stakeholders, comprising two parents of children with chronic functional constipation, two adults who experienced childhood chronic functional constipation and four health professional/continence experts, contributed throughout the research. We conducted pragmatic mixed-method reviews. For all reviews, included studies focused on any interventions/strategies, delivered in any setting, to improve any outcomes in children (0-18 years) with a clinical diagnosis of chronic functional constipation (excluding studies of diagnosis/assessment) included. Dual reviewers applied inclusion criteria and assessed risk of bias. One reviewer extracted data, checked by a second reviewer. Scoping review: We systematically searched electronic databases (including Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, Cumulative Index to Nursing and Allied Health Literature) (January 2011 to March 2020) and grey literature, including studies (any design) reporting any intervention/strategy. Data were coded, tabulated and mapped. Research quality was not evaluated. Systematic reviews of the evidence of effectiveness: For each different intervention, we included existing systematic reviews judged to be low risk of bias (using the Risk of Bias Assessment Tool for Systematic Reviews), updating any meta-analyses with new randomised controlled trials. Where there was no existing low risk of bias systematic reviews, we included randomised controlled trials and other primary studies. The risk of bias was judged using design-specific tools. Evidence was synthesised narratively, and a process of considered judgement was used to judge certainty in the evidence as high, moderate, low, very low or insufficient evidence. Economic synthesis: Included studies (any design, English-language) detailed intervention-related costs. Studies were categorised as cost-consequence, cost-effectiveness, cost-utility or cost-benefit, and reporting quality evaluated using the consensus health economic criteria checklist. Systematic review of implementation factors: Included studies reported data relating to implementation barriers or facilitators. Using a best-fit framework synthesis approach, factors were synthesised around the consolidated framework for implementation research domains. Results: Stakeholders prioritised outcomes, developed a model which informed evidence synthesis and identified evidence gaps. Scoping review: 651 studies, including 190 randomised controlled trials and 236 primary studies, conservatively reported 48 interventions/intervention combinations. Effectiveness systematic reviews: studies explored service delivery models (n = 15); interventions delivered by families/carers (n = 32), wider children's workforce (n = 21), continence teams (n = 31) and specialist consultant-led teams (n = 42); complementary therapies (n = 15); and psychosocial interventions (n = 4). One intervention (probiotics) had moderate-quality evidence; all others had low to very-low-quality evidence. Thirty-one studies reported evidence relating to cost or resource use; data were insufficient to support generalisable conclusions. One hundred and six studies described implementation barriers and facilitators. Conclusions: Management of childhood chronic functional constipation is complex. The available evidence remains limited, with small, poorly conducted and reported studies. Many evidence gaps were identified. Treatment recommendations within current clinical guidelines remain largely unchanged, but there is a need for research to move away from considering effectiveness of single interventions. Clinical care and future studies must consider the individual characteristics of children. Study registration: This study is registered as PROSPERO CRD42019159008. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 128470) and is published in full in Health Technology Assessment; Vol. 28, No. 5. See the NIHR Funding and Awards website for further award information.

Between 5% and 30% of children experience constipation at some stage. In one-third of these children, this progresses to chronic functional constipation. Chronic functional constipation affects more children with additional needs. We aimed to find and bring together published information about treatments for chronic functional constipation, to help establish best treatments and treatment combinations. We did not cover assessment or diagnosis of chronic functional constipation. This project was guided by a 'stakeholder group', including parents of children with constipation, people who experienced constipation as children, and healthcare professionals/continence experts. We carried out a 'scoping review' and a series of 'systematic reviews'. Our 'scoping review' provides an overall picture of research about treatments, with 651 studies describing 48 treatments. This helps identify important evidence gaps. 'Systematic reviews' are robust methods of bringing together and interpreting research evidence. Our stakeholder group decided to structure our systematic reviews to reflect who delivered the interventions. We brought together evidence about how well treatments worked when delivered by families/carers (32 studies), the wider children's workforce (e.g. general practitioner, health visitor) (21 studies), continence teams (31 studies) or specialist consultant-led teams (42 studies). We also considered complementary therapies (15 studies) and behavioural strategies (4 studies). Care is affected by what is done and how it is done. We brought together evidence about different models of delivering care (15 studies), barriers and facilitators to implementation of treatments (106 studies) and costs (31 studies). Quality of evidence was mainly low to very low. Despite numerous studies, there was often insufficient information to support generalisable conclusions. Our findings generally agreed with current clinical guidelines. Management of childhood chronic functional constipation should be child-centred, multifaceted and adapted according to the individual child, their needs, the situation in which they live and the health-care setting in which they are looked after. Research is needed to address our identified evidence gaps.

Early vocational rehabilitation and psychological support for trauma patients to improve return to work (the ROWTATE trial): study protocol for an individually randomised controlled multicentre pragmatic trial.

BACKGROUND: Moderately severe or major trauma (injury severity score (ISS) > 8) is common, often resulting in physical and psychological problems and leading to difficulties in returning to work. Vocational rehabilitation (VR) can improve return to work/education in some injuries (e.g. traumatic brain and spinal cord injury), but evidence is lacking for other moderately severe or major trauma. METHODS: ROWTATE is an individually randomised controlled multicentre pragmatic trial of early VR and psychological support in trauma patients. It includes an internal pilot, economic evaluation, a process evaluation and an implementation study. Participants will be screened for eligibility and recruited within 12 weeks of admission to eight major trauma centres in England. A total of 722 participants with ISS > 8 will be randomised 1:1 to VR and psychological support (where needed, following psychological screening) plus usual care or to usual care alone. The ROWTATE VR intervention will be provided within 2 weeks of study recruitment by occupational therapists and where needed, by clinical psychologists. It will be individually tailored and provided for ≤ 12 months, dependent on participant need. Baseline assessment will collect data on demographics, injury details, work/education status, cognitive impairment, anxiety, depression, post-traumatic distress, disability, recovery expectations, financial stress and health-related quality of life. Participants will be followed up by postal/telephone/online questionnaires at 3, 6 and 12 months post-randomisation. The primary objective is to establish whether the ROWTATE VR intervention plus usual care is more effective than usual care alone for improving participants' self-reported return to work/education for at least 80% of pre-injury hours at 12 months post-randomisation. Secondary outcomes include other work outcomes (e.g. hours of work/education, time to return to work/education, sickness absence), depression, anxiety, post-traumatic distress, work self-efficacy, financial stress, purpose in life, health-related quality of life and healthcare/personal resource use. The process evaluation and implementation study will be described elsewhere. DISCUSSION: This trial will provide robust evidence regarding a VR intervention for a major trauma population. Evidence of a clinically and cost-effective VR intervention will be important for commissioners and providers to enable adoption of VR services for this large and important group of patients within the NHS. TRIAL REGISTRATION: ISRCTN: 43115471. Registered 27/07/2021.

Improving continence in children and young people with neurodisability: a systematic review and survey.

BACKGROUND: Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective. OBJECTIVE: The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability. DESIGN: A systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability. RESULTS: Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child. LIMITATIONS: Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias. CONCLUSIONS: Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions. FUTURE WORK: There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment. STUDY REGISTRATION: This study is registered as PROSPERO CRD42018100572. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.

Learning to go to the toilet is an important skill. Becoming continent involves knowing when you need to go, holding on until you find the right place, going to the toilet, cleaning and getting dressed again. Many children and young people with special educational needs or disability can learn to become clean and dry, sometimes with help or equipment. Advice is not consistent about the best ways to assess and treat continence problems for children and young people with neurodisability. This research aimed to find out how families and professionals measure and improve continence, and if there was evidence about which treatments are useful. We brought together the results of studies that have tested ways of assessing and improving toilet training for children and young people with special educational needs or disability. We carried out four online surveys with health professionals, education and care staff, parent carers, and disabled young people. We brought together and explained the findings from the surveys and the studies with help from parent carers and professionals. Approaches to improving continence vary depending on whether or not the child or young person's nerves and muscles that control their bladder and bowel work properly. Children and young people with conditions affecting the nerves and muscles of their bladder and bowel are often helped by medical or surgical treatments. Children and young people with conditions such as learning disability or autism may benefit from behavioural therapies to help them learn to use the toilet. There is poor evidence for how well treatments work and whether or not they are value for money. More and better research is needed to make sure that children and young people are able to be clean and dry without pads, maximising their independence, dignity and comfort. This also requires an adequate number of fully accessible toilets in the community.

Assessment and treatment of nocturnal enuresis in children and young people.

Nocturnal enuresis - or bed-wetting - is one of the most common chronic conditions of childhood. It has a significant effect on the quality of life of affected children and their families and is associated with several comorbidities, some of which resolve on successful treatment. The causes of this troublesome condition are explored and the principles of assessment and treatment are discussed with reference to National Institute for Health and Care Excellence guidance as well as research. Response to treatment resistance is considered and appropriate onward referral discussed.

Toilet training for children with autism.

Toilet training is one of the key developmental milestones of early childhood and there is growing evidence that it is now being initiated later than it was 50 years ago. This article explores the reasons why this is happening and considers the effect on children with autism and related conditions. It also examines the literature to discover the approaches to toilet training for this group. Research into this area has generally focused on small numbers of children and incorporated modified versions of Azrin and Foxx's ( 1971 ) rapid toilet training method. Suggestions are offered about the most appropriate advice to give parents and carers of children with autism and related disorders, and the importance of addressing toilet training at an early stage.