Health economic evaluations of preventative care for perinatal anxiety and associated disorders: a rapid review.

OBJECTIVES: Perinatal mental health problems affect one in five women and cost the UK £8.1 billion for every year of births, with 72% of this cost due to the long-term impact on the child. We conducted a rapid review of health economic evaluations of preventative care for perinatal anxiety and associated disorders. DESIGN: This study adopted a rapid review approach, using principles of the standard systematic review process to generate quality evidence. This methodology features a systematic database search, Preferred Reporting Items for Systematic Reviews and Meta-Analyses diagram, screening of evidence, data extraction, critical appraisal and narrative synthesis. DATA SOURCES: PubMed, Cumulative Index to Nursing and Allied Health Literature, Cochrane Library, Applied Social Sciences Index and Abstracts, PsycINFO and MEDLINE. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Studies that evaluated the costs and cost-effectiveness of preventative care for perinatal anxiety and associated disorders carried out within the National Health Service and similar healthcare systems. DATA EXTRACTION AND SYNTHESIS: A minimum of two independent reviewers used standardised methods to search, screen, critically appraise and synthesise included studies. RESULTS: The results indicate a lack of economic evaluation specifically for perinatal anxiety, with most studies focusing on postnatal depression (PND). Interventions to prevent postnatal mental health problems are cost-effective. Modelling studies have also been conducted, which suggest that treating PND with counselling would be cost-effective. CONCLUSION: The costs of not intervening in maternal mental health outweigh the costs of preventative interventions. Preventative measures such as screening and counselling for maternal mental health are shown to be cost-effective interventions to improve outcomes for women and children. PROSPERO REGISTRATION NUMBER: CRD42022347859.

Uptake of diabetes follow-up checks by minority community groups: a rapid review of the evidence for the CYMELL study.

BACKGROUND: Type 2 diabetes is a public health priority for the UK. A growing body of evidence has indicated ethnic and socioeconomic disparities in rates of diabetes prevalence and complications. Attendance at diabetes follow-up checks is key to ensuring complications are identified and managed at an early stage. The aim of this rapid review was to identify and summarise evidence of ways to improve diabetes management in ethnic minority groups. METHODS: In this rapid review, we searched PubMed, PsycInfo, and CINAHL for studies published in English between Jan 1, 2000, and Jan 31, 2023. Studies were included if the population was from ethnic minority groups and if the intervention was community-based and aimed to improve diabetes self-care. The comparisons were persuasion and behaviour change, and the outcomes were improved diabetes self-management including, glycaemic control, attending eye tests, kidney, and foot screening follow-up checks. This study is registered with PROSPERO 2023, CRD42023399283. FINDINGS: Nine studies were included, from Mexico (n=1), USA (n=7), and UK (n=1). Most studies reported on community engagement (n=8), and one focussed on peer support and diabetes self-management. Peer support and diabetes self-management education were found to significantly improve diabetes control in a Mayan community (n=29) in Mexico (p<0·0001) and in the Korean American (n=105), African American (n=107), and Latino American (n=56) communities in the USA. Another study showed that women from the Pakistani community in England also benefitted from a culturally appropriate and socially supportive environment when learning about diabetes self-management. Diabetic eye screening rates could be increased through education but not through incentive payments. INTERPRETATION: Culturally competent health-care policies and programmes have been shown to increase diabetes self-management including uptake of diabetes screening for people with diabetes from ethnic minority communities to avoid potential harmful and life limiting conditions. A strength of this review is that robust, recent, and relevant papers regarding self-management of diabetes were included. The main limitations were that none of the nine studies included any cost analyses, and only one UK-based study was included, indicating that further research is required to fill the evidence gap. FUNDING: Research for Patient and Public Benefit (RfPPB), Health and Care Research Wales.

Prospects and Aspirations for Workforce Training and Education in Social Prescribing.

BACKGROUND: A social prescribing (SP) link worker (LW) is responsible for enabling and supporting individuals, by assessing their personal goals and co-producing solutions to make use of appropriate local non-clinical resources or interventions. As an emerging new role, LWs are not regulated by professional bodies associated with SP. Therefore, currently there is no standardised training for LWs who are from varied backgrounds. As such, LWs have varying knowledge about how to deal with individuals with complex needs, which can impact on their decision-making capabilities to seek solutions and navigate complex systems. The purpose of the research was to explore LWs' level of education, past and current training requirements as well as elicit how much LWs were willing to pay (WTP) to access and undertake training to improve their skill set. METHODS: A rigorous mixed method research design was employed which included semi-structured interviews with key stakeholders and quantitative questionnaires including contingent valuation (CV) questions to a population of LWs across Wales from March to June 2020. Qualitative interviews with key stakeholders who commission and deliver social prescribing interventions employing LWs identified perceived link worker qualities and requirements for LW roles. Purposive sampling was used to identify and select individuals that have experience in managing LWs. Due to the COVID-19 pandemic, interviews were carried out exclusively online. LWs self-selected to complete the online questionnaires. Questionnaires gathered data on LW qualifications and demographic information with the CV questions gathering data on the value LW placed on accessing training in SP. Thematic narrative analysis was applied to interpret the data from the semi-structured interviews. Descriptive frequency analysis was conducted on the quantitative data generated from the online questionnaire. FINDINGS: SP coordinators (n = 6) reported that 'personal skills' are the most essential skills required by LWs in SP intervention. Training is available for LWs; however, the training undertaken varies depending on the type of intervention delivered, with 70% of LWs previously undertaking training to facilitate their development as an LW. The results from the contingent valuation questionnaire (n = 54) indicated that 100% of the respondents would avail of training. LWs were asked how much they were willing to pay as a single payment for professional training; on average, LWs were WTP GBP 58 from their personal funds to access training and the associated benefits to enhance their skills and knowledge. INTERPRETATION: The semi-structured interviews conducted with the key SP stakeholders yielded rich information and novel insight into LW training. External funding for the salary of the LW is an obstacle for LW development through training. In addition, the questionnaire results regarding stated preference techniques demonstrate that LWs place value on their professional development and would be willing to spend their own money on training to improve their knowledge and skills.

An Economic Evaluation Supported by Qualitative Data About the Patient Concerns Inventory (PCI) versus Standard Treatment Pathway in the Management of Patients with Head and Neck Cancer.

BACKGROUND: The head and neck cancer (HNC) Patient Concerns Inventory (PCI) is a condition-specific prompt list that allows patients to raise concerns to cancer consultants that otherwise might be overlooked. OBJECTIVE: This is the first economic evaluation of the PCI in patients with HNC investigating the costs and effects to the health service of not prioritising certain treatment pathways in addition to the primary cancer pathway. Additional costs can be accrued due to delayed referral to other appropriate services, e.g. hospital dentist. Economic evidence could influence future policy direction in this area globally. METHODS: Alongside a 3-year clustered randomised controlled trial, an economic evaluation was undertaken with Client Service Receipt Inventory data collected at three different time points (baseline and 6 and 12 months post-baseline). Patients were identified by a multidisciplinary team at the trial clinics. This economic analysis compared the PCI intervention versus the non-PCI treatment pathway. A deterministic and probabilistic sensitivity analysis was conducted to investigate the cost per quality-adjusted life-year (QALY) gain of the PCI versus non-PCI intervention treatment pathways. Qualitative data were also collected from seven consultants to triangulate findings from the economic evaluation. RESULTS: The analysis used data from 191 patients (66% of the full trial sample). The PCI inventory was low cost, at just over £13 per participant. The PCI intervention was cost effective and also cost saving, with an incremental cost difference of £295.91 over the 12-month follow-up period. The QALY values were higher in the PCI intervention strategy, with a value of 0.79, whereas the non-PCI group had a value of 0.76, thus the PCI intervention was dominant. The sensitivity analysis showed that, at a willingness-to-pay threshold of £20,000 per QALY gained, the probability of being cost effective was 0.85 (95% confidence interval [CI] 0.80-0.83). Qualitative results showed that consultants using the PCI reported an enhanced awareness of patients' overall post-treatment needs. DISCUSSION: The PCI provided an effective means to conduct clinical consultations by avoiding unnecessary healthcare costs and focussing on aspects of care most important to patients. The cost per QALY gain was within the National Institute for Health and Care Excellence guideline threshold. The economic evaluation showed that the PCI intervention strategy was dominant and therefore cost saving to the national health service (NHS) and was more effective in terms of treatment. CONCLUSION: The PCI appears to be a low-cost intervention that generates a cost-effective benefit to patients from a NHS perspective if rolled out as part of routine care. Qualitative evidence has shown that the use of the PCI is supported by consultants in routine practice. TRIAL REGISTRATION: Clinical Trials Identifier: NCT03086629.

A Systematic Review to Examine the Evidence in Developing Social Prescribing Interventions That Apply a Co-Productive, Co-Designed Approach to Improve Well-Being Outcomes in a Community Setting.

This systematic review aims to investigate the evidence in applying a co-design, co-productive approach to develop social prescribing interventions. A growing body of evidence suggests that co-production and co-design are methods that can be applied to engage service users as knowledgeable assets who can contribute to developing sustainable health services. Applying the Preferred Reporting Items for Systemic Reviews and Meta-Analyses (PRISMA) guidelines, a systematic literature search was conducted. Peer-reviewed articles were sought using electronic databases, experts and grey literature. The review search concluded with eight observational studies. Quality appraisal methods were influenced by the Grades of Recommendation, Assessment, Development and Evaluation (GRADE) Framework approach. A narrative thematic synthesis of the results was conducted. The evidence suggests that a co-design and co-productive social prescribing can lead to positive well-being outcomes among communities. Barriers and facilitators of co-production and co-design approach were also highlighted within the evidence. The evidence within this review confirms that a co-production and co-design would be an effective approach to engage stakeholders in the development and implementation of a SP intervention within a community setting. The evidence also implies that SP initiatives can be enhanced from the outset, by drawing on stakeholder knowledge to design a service that improves health and well-being outcomes for community members.

Development of the MobQoL patient reported outcome measure for mobility-related quality of life.

PURPOSE: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure. MATERIALS AND METHODS: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions. RESULTS: Forty-six interviews were conducted with 37 participants (aged 20-94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed. CONCLUSIONS: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation.Implications for RehabilitationMobility impairment affects many different aspects of health and quality of life.The impact of mobility impairment on quality of life is related to processes of physical, emotional, and behavioural adaptation.MobQoL is the first patient-reported outcome measure designed specifically to measure the quality of life impacts of mobility impairment and assistive mobility technology use.MobQoL has potential to be used by rehabilitation professionals to measure and monitor mobility-related quality of life as part of routine clinical practice.

WASh multicentre randomised controlled trial: water-assisted sigmoidoscopy in English NHS bowel scope screening.

OBJECTIVES: The English Bowel Cancer Screening Programme invites 55 year olds for a sigmoidoscopy (Bowel Scope Screening (BSS)), aiming to resect premalignant polyps, thus reducing cancer incidence. A national patient survey indicated higher procedural pain than anticipated, potentially impacting on screening compliance and effectiveness. We aimed to assess whether water-assisted sigmoidoscopy (WAS), as opposed to standard CO2 technique, improved procedural pain and detection of adenomatous polyps. DESIGN: The WASh (Water-Assisted Sigmoidoscopy) trial was a multicentre, single-blind, randomised control trial for people undergoing BSS. Participants were randomised to either receive WAS or CO2 from five sites across England. The primary outcome measure was patient-reported moderate/severe pain, as assessed by patients on a standard Likert scale post procedure prior to discharge. The key secondary outcome was adenoma detection rate (ADR). The costs of each technique were also measured. RESULTS: 1123 participants (50% women, mean age 55) were randomised (561 WAS, 562 CO2). We found no difference in patient-reported moderate/severe pain between WAS and CO2 (14% in WAS, 15% in CO2; p=0.47). ADR was 15% in the CO2 arm and 11% in the WAS arm (p=0.03); however, it remained above the minimum national performance standard in both arms. There was no statistical difference in mean number of adenomas nor overall polyp detection rate. There was negligible cost difference between the two techniques. CONCLUSION: In the context of enema-prepared unsedated screening sigmoidoscopies performed by screening-accredited endoscopists, no difference in patient-reported pain was seen when using either a CO2 or WAS intubation technique. TRIAL REGISTRATION NUMBER: ISRCTN81466870.

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial.

PURPOSE: The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discuss issues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinics for one year after treatment on health-related QOL (HRQOL). METHODS: A pragmatic cluster preference randomised control trial with 15 consultants, 8 'using' and 7 'not using' the PCI intervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible. RESULTS: Consultants saw a median (inter-quartile range) 16 (13-26) patients, with 140 PCI and 148 control patients. Of the pre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) social-emotional subscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after full adjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primary outcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (- 2.9%, 12.9%) but without achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultant level also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selected decreased over time. CONCLUSION: This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost means of benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.

A Scoping Review of How Income Affects Accessing Local Green Space to Engage in Outdoor Physical Activity to Improve Well-Being: Implications for Post-COVID-19.

BACKGROUND: The National Institute for Health and Care Excellence (NICE) has set out guidance for promoting physical activity (PA) in the physical environment to promote health and well-being. The aim of this selective scoping review was to investigate the influence of gross income on accessing local green spaces to engage in PA and the associated health benefits. METHODS: A scoping review was conducted of international literature to facilitate the clarification of the research question. FINDINGS: 15 papers were critically appraised under two themes: (1) environments and well-being and (2) PA and income/socioeconomic status and impact on the frequency, duration and opportunity to engage in PA. INTERPRETATION: Income is related to differential use of green and blue spaces for PA, due mainly to access issues. People who live in lower socioeconomic areas tend to be more sedentary and there are also gender differences related to PA in built environments. CONCLUSION: There is an effect of income in using green spaces for PA, but the relationship is non-linear, and there is still a lack of knowledge about what kind of green spaces are best for health benefits. The COVID-19 pandemic highlighted the importance of accessing green local spaces to engage in physical exercise to improve well-being among the public.

A Systematic Review Exploring the Economic Valuation of Accessing and Using Green and Blue Spaces to Improve Public Health.

Contact with the natural environment in green and blue spaces can have a valuable influence on population physical and mental health and wellbeing. The aim of this study is to explore the economic evidence associated with the public's value for accessing, using and improving local environments to undertake recreational activity and consuming the associated health benefits of green and blue spaces. Applying the Preferred Reporting Items for Systemic Reviews and Meta-Analyses (PRISMA) guidelines, a systematic literature search was conducted. Peer-reviewed articles were sought using electronic databases, scrutiny of reference lists, experts and grey literature. All relevant papers meeting the criteria were critically appraised for methodological quality using the Drummond checklist. The review search concluded with 12 papers applying the Grades of Recommendation, Assessment, Development and Evaluation (GRADE) approach to assess the quality with a narrative analysis conducted under the themes. Results suggest the public value access to green and blue spaces to undertake recreational activities and avoid delay or losing the recreational experience and associated health benefits. The public are willing to pay between £5.72 and £15.64 in 2019 value estimates for not postponing or losing an outdoor experience and for walking in local environments under current and improved environmental conditions, respectively. Valuation estimates indicate the public value green and blue spaces and are willing to pay to improve local environments to gain the health benefits of undertaking leisure activities in green and blue spaces.

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: baseline results in a cluster preference randomised controlled trial.

PURPOSE: The main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial. The baseline PCI data will also be described. METHODS: This is a pragmatic cluster preference randomised control trial with 15 consultant clusters from two sites either 'using' (n = 8) or 'not using' (n = 7) the PCI at a clinic for all of their trial patients. The PCI is a 56-item prompt list that helps patients raise concerns that otherwise might be missed. Eligibility was head and neck cancer patients treated with curative intent (all sites, stage of disease, treatments). RESULTS: From 511 patients first identified as eligible when screening for the multi-disciplinary tumour board meetings, 288 attended a first routine outpatient baseline study clinic after completion of their treatment, median (IQR) of 103 (71-162) days. At baseline, the two trial groups were similar in demographic and clinical characteristics as well as in HRQOL measures apart from differences in tumour location, tumour staging and mode of treatment. These exceptions were cluster (consultant) related to Maxillofacial and ENT consultants seeing different types of cases. Consultation times were similar, with PCI group times taking about 1 min longer on average (95% CL for the difference between means was from - 0.7 to + 2.2 min). CONCLUSION: Using the PCI in routine post-treatment head and neck cancer clinics do not elongate consultations. Recruitment has finished but 12-month follow-up is still ongoing.

Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness.

INTRODUCTION: Mobility impairment is the leading cause of disability in the UK. Individuals with congenital mobility impairments have unique experiences of health, quality of life and adaptation. Preference-based outcomes measures are often used to help inform decisions about healthcare funding and prioritisation, however the applicability and accuracy of these measures in the context of congenital mobility impairment is unclear. Inaccurate outcome measures could potentially affect the care provided to these patient groups. The aim of this systematic review was to examine the performance of preference-based outcome measures for the measurement of utility values in various forms of congenital mobility impairment. METHODS: Ten databases were searched, including Science Direct, CINAHL and PubMed. Screening of reference lists and hand-searching were also undertaken. Descriptive and narrative syntheses were conducted to combine and analyse the various findings. Results were grouped by condition. Outcome measure performance indicators were adapted from COSMIN guidance and were grouped into three broad categories: validity, responsiveness and reliability. Screening, data extraction and quality appraisal were carried out by two independent reviewers. RESULTS: A total of 31 studies were considered eligible for inclusion in the systematic review. The vast majority of studies related to either cerebral palsy, spina bifida or childhood hydrocephalus. Other relevant conditions included muscular dystrophy, spinal muscular atrophy and congenital clubfoot. The most commonly used preference-based outcome measure was the HUI3. Reporting of performance properties predominantly centred around construct validity, through known group analyses and assessment of convergent validity between comparable measures and different types of respondents. A small number of studies assessed responsiveness, but assessment of reliability was not reported. Increased clinical severity appears to be associated with decreased utility outcomes in congenital mobility impairment, particularly in terms of gross motor function in cerebral palsy and lesion level in spina bifida. However, preference-based measures exhibit limited correlation with various other condition-specific and clinically relevant outcome measures. CONCLUSION: Preference-based measures exhibit important issues and discrepancies relating to validity and responsiveness in the context of congenital mobility impairment, thus care must be taken when utilising these measures in conditions associated with congenital mobility impairments.

Standardised self-management kits for children with type 1 diabetes: pragmatic randomised trial of effectiveness and cost-effectiveness.

OBJECTIVE: To estimate the effectiveness of standardised self-management kits for children with type 1 diabetes. DESIGN: Pragmatic trial with randomisation ratio of two intervention: one control. Qualitative process evaluation. SETTING: 11 diabetes clinics in England and Wales. PARTICIPANTS: Between February 2010 and August 2011, we validly randomised 308 children aged 6-18 years; 201 received the intervention. INTERVENTION: We designed kits to empower children to achieve glycaemic control, notably by recording blood glucose and titrating insulin. The comparator was usual treatment. OUTCOME MEASURES AT 3 AND 6 MONTHS: Primary: Diabetes Pediatric Quality of Life Inventory (PedsQL). Secondary: HbA1c; General PedsQL; EQ-5D; healthcare resource use. RESULTS: Of the five Diabetes PedsQL dimensions, Worry showed adjusted scores significantly favouring self-management kits at 3 months (mean child-reported difference =+5.87; Standard error[SE]=2.19; 95% confidence interval [CI]) from +1.57 to +10.18; p=0.008); but Treatment Adherence significantly favoured controls at 6 months (mean child-reported difference=-4.68; SE=1.74; 95%CI from -8.10 to -1.25; p=0.008). Intervention children reported significantly worse changes between 3 and 6 months on four of the five Diabetes PedsQL dimensions and on the total score (mean difference=-3.20; SE=1.33; 95% CI from -5.73 to -0.67; p=0.020). There was no evidence of change in HbA1c; only 18% of participants in each group achieved recommended levels at 6 months. No serious adverse reactions attributable to the intervention or its absence were reported.Use of kits was poor. Few children or parents associated blood glucose readings with better glycaemic control. The kits, costing £185, alienated many children and parents. CONCLUSIONS: Standardised kits showed no evidence of benefit, inhibited diabetes self-management and increased worry. Future research should study relationships between children and professionals, and seek new methods of helping children and parents to manage diabetes. TRIAL REGISTRATION NUMBER: ISRCTN17551624.

Conceptualization of physical exercise and keeping fit by child wheelchair users and their parents.

AIM: To gain a better understanding of how children aged 6-18 years who use wheelchairs and their families conceptualized physical exercise and keeping fit. BACKGROUND: Disabled children with reduced mobility are commonly overweight and unfit. Nurse-led health screening programmes in schools commonly exclude disabled children if they cannot use standard weighing scales or stand against height measuring sticks. DESIGN: Qualitative interview study at two time points over 6 months with children who use wheelchairs and their families. METHODS: Framework analysis using the theory of planned behaviour. FINDINGS: Mainly physically active participants were recruited (24 children and 23 parents) 2013-2014. Despite engaging in high levels of physical exercise, children were assessed as fit but had elevated body fat and did not realize how fit they were or that they were slightly overweight and nor did their parents. Children enjoyed the social benefits of exercise. Unlike their parents, children confused the purpose and outcomes of physical exercise with therapy (e.g. physiotherapy) and incorrectly understood the effects of physical exercise on body function and strength, preventing stiffness, increasing stamina and reducing fatigue. A new model was developed to show children's misconceptions. CONCLUSIONS: Proactive parents can overcome barriers to enable their children to benefit from physical exercise. Professionals need to increase communication clarity to improve children's understanding of therapy compared with physical exercise outcomes. Inclusion of children who use wheelchairs in health education policy; routine health screening; physical education classes and teacher training requires improvement. Body composition measurement is recommended, for which nurses will need training.

Systematic review of physical activity and exercise interventions to improve health, fitness and well-being of children and young people who use wheelchairs.

AIM: To perform a systematic review establishing the current evidence base for physical activity and exercise interventions that promote health, fitness and well-being, rather than specific functional improvements, for children who use wheelchairs. DESIGN: A systematic review using a mixed methods design. DATA SOURCES: A wide range of databases, including Web of Science, PubMed, BMJ Best Practice, NHS EED, CINAHL, AMED, NICAN, PsychINFO, were searched for quantitative, qualitative and health economics evidence. ELIGIBILITY: participants: children/young people aged >25 years who use a wheelchair, or parents and therapists/carers. Intervention: home-based or community-based physical activity to improve health, fitness and well-being. RESULTS: Thirty quantitative studies that measured indicators of health, fitness and well-being and one qualitative study were included. Studies were very heterogeneous preventing a meta-analysis, and the risk of bias was generally high. Most studies focused on children with cerebral palsy and used an outcome measure of walking or standing, indicating that they were generally designed for children with already good motor function and mobility. Improvements in health, fitness and well-being were found across the range of outcome types. There were no reports of negative changes. No economics evidence was found. CONCLUSIONS: It was found that children who use wheelchairs can participate in physical activity interventions safely. The paucity of robust studies evaluating interventions to improve health and fitness is concerning. This hinders adequate policymaking and guidance for practitioners, and requires urgent attention. However, the evidence that does exist suggests that children who use wheelchairs are able to experience the positive benefits associated with appropriately designed exercise. TRIAL REGISTRATION NUMBER: CRD42013003939.

Well-being, health and fitness of children who use wheelchairs: feasibility study protocol to develop child-centred 'keep-fit' exercise interventions.

AIM: To undertake the pre-clinical and modelling phases of the Medical Research Council complex intervention framework to underpin development of child-centred 'keep-fit', exercise and physical activity interventions for children and young people who use wheelchairs. BACKGROUND: Children who use wheelchairs face many barriers to participation in physical activity, which compromises fitness, obesity, well-being and health. 'Keep-fit' programmes that are child-centred and engaging are urgently required to enhance participation of disabled children and their families as part of a healthy lifestyle. Nurses will likely be important in promoting and monitoring 'keep-fit' intervention(s) when implemented in the community. DESIGN: Mixed-method (including economic analysis) feasibility study to capture child and family preferences and keep-fit needs and to determine outcome measures for a 'keep-fit' intervention. METHODS: The study comprises three stages. Stage 1 includes a mixed-method systematic review of effectiveness, cost effectiveness and key stakeholder views and experiences of keep-fit interventions, followed by qualitative interviews with children, young people and their parents to explore preferences and motivations for physical activity. Stage 2 will identify standardized outcome measures and test their application with children who use wheelchairs to obtain baseline fitness data. Options for an exercise-based keep-fit intervention will then be designed based on Stage 1 and 2 findings. In stage 3, we will present intervention options for feedback and further refinement to children and parents/carers in focus groups. (Project funded October 2012). DISCUSSION: At completion, this study will lead to the design of the intervention and a protocol to test its efficacy.

'Keep fit' exercise interventions to improve health, fitness and well-being of children and young people who use wheelchairs: mixed-method systematic review protocol.

AIM: This mixed-method systematic review aims to establish the current evidence base for 'keep fit', exercise or physical activity interventions for children and young people who use wheelchairs. BACKGROUND: Nurses have a vital health promotion, motivational and monitoring role in optimizing the health and well-being of disabled children. Children with mobility impairments are prone to have low participation levels in physical activity, which reduces fitness and well-being. Effective physical activity interventions that are fun and engaging for children are required to promote habitual participation as part of a healthy lifestyle. Previous intervention programmes have been trialled, but little is known about the most effective types of exercise to improve the fitness of young wheelchair users. DESIGN: Mixed-method design using Cochrane systematic processes. Evidence regarding physiological and psychological effectiveness, health economics, user perspectives and service evaluations will be included and analysed under distinct streams. METHODS: The project was funded from October 2012. Multiple databases will be searched using search strings combining relevant medical subheadings and intervention-specific terms. Articles will also be identified from ancestral references and by approaching authors to identify unpublished work. Only studies or reports evaluating the effectiveness, participation experiences or cost of a physical activity programme will be included. Separate analyses will be performed for each data stream, including a meta-analysis if sufficient homogeneity exists and thematic analyses. Findings across streams will be synthesized in an overarching narrative summary. DISCUSSION: Evidence from the first systematic review of this type will inform development of effective child-centred physical activity interventions and their evaluation.

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar.

BACKGROUND: Children's palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children's hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. METHODS: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. RESULTS: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children's palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). CONCLUSIONS: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children's palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings.

Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of 'My Choices'.

BACKGROUND: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. METHODS: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. RESULTS: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. CONCLUSION: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning.

Language awareness in the bilingual healthcare setting: a national survey.

BACKGROUND: The significance of effective interpersonal communication in healthcare is well established, as is the importance of overcoming language barriers. This has a particular bearing for minority language speakers, where denying language choice can compromise the quality of healthcare provision. Nevertheless, there is limited empirical research exploring language awareness in healthcare and the factors that influence language choice for minority language speakers. OBJECTIVES: This paper reports on the nurses, midwives and health visitors (NMHV) data set of the first phase of a large-scale national study, commissioned by the Welsh Assembly Government, to examine the nature and extent of Welsh language awareness amongst healthcare professionals in Wales, UK. DESIGN: The study involved a questionnaire survey of healthcare professionals working in the public, private and voluntary sectors of healthcare. PARTICIPANTS: A stratified random sample of 3358 healthcare professionals was surveyed, of which 1842 (55%) were nurses, midwives and health visitors. The researcher-designed self-administered questionnaire was distributed by post to participants between July and September 2003. A total of 1042 (57%) NMHV returned their questionnaires for analysis. RESULTS: A strong positive correlation is identified between the NMHV use of the Welsh language in practice and their Welsh language proficiency (p<.01); language attitudes (p<.01); and language region (p<.01). Mean language attitude scores are more positive than expected, particularly amongst those with limited Welsh language proficiency and those working in regions with the lowest proportions of Welsh speakers. CONCLUSIONS: In view of the universal drive for culturally and linguistically appropriate healthcare practice, the findings have important implications for bilingual and multilingual healthcare settings worldwide. The evidence emerging from this survey confirms that cross-cultural communication is enhanced by NMHV language attitudes as well as their proficiency levels. Language awareness training is therefore recommended as a way of enhancing care delivery for minority language speakers.