Inequalities in emergency care use across transition from paediatric to adult care: a retrospective cohort study of young people with chronic kidney disease in England.

Transition of young people with chronic kidney disease (CKD) from paediatric to adult healthcare has been associated with poor outcomes, but few population-level studies examine trends in subgroups. We aimed to assess sociodemographic inequalities in changes in unplanned secondary care utilisation occurring across transfer to adult care for people with CKD in England. A cohort was constructed from routine healthcare administrative data in England of young people with childhood-diagnosed CKD who transitioned to adult care. The primary outcome was the number of emergency inpatient admissions and accident and emergency department (A&E) attendances per person year, compared before and after transfer. Injury-related and maternity admissions were excluded. Outcomes were compared via sociodemographic data using negative binomial regression with random effects. The cohort included 4505 individuals. Controlling for age, birth year, age at transfer, region and sociodemographic factors, transfer was associated with a significant decrease in emergency admissions (IRR 0.75, 95% CI 0.64-0.88) and no significant change in A&E attendances (IRR 1.10, 95% CI 0.95-1.27). Female sex was associated with static admissions and increased A&E attendances with transfer, with higher admissions and A&E attendances compared to males pre-transfer. Non-white ethnicities and higher deprivation were associated with higher unplanned secondary care use. CONCLUSION:  Sociodemographic inequalities in emergency secondary care usage were evident in this cohort across the transition period, independent of age, with some variation between admissions and A&E use, and evidence of effect modification by transfer. Such inequalities likely have multifactorial origin, but importantly, could represent differential meetings of care needs. WHAT IS KNOWN: • In chronic kidney disease (CKD), transfer from paediatric to adult healthcare is associated with declining health outcomes. • Known differences in CKD outcomes by sociodemographic factors have limited prior exploration in the context of transfer. WHAT IS NEW: • Population-level data was used to examine the impacts of transfer and sociodemographic factors on unplanned secondary care utilisation in CKD. • Healthcare utilisation trends may not reflect known CKD pathophysiology and there may be unexplored sociodemographic inequalities in the experiences of young people across transfer.

Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis.

BACKGROUND: The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. AIM: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. DESIGN: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. SETTING: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. RESULTS: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. CONCLUSION: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric).

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

BACKGROUND: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. AIM: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. SETTING/PARTICIPANTS: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. RESULTS: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. CONCLUSIONS: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

BACKGROUND: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. AIM: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. DESIGN: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/PARTICIPANTS: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. RESULTS: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. CONCLUSION: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.

Defining and quantifying population-level need for children's palliative care: findings from a rapid scoping review.

BACKGROUND: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and future CPC need, but quantifying need is hampered by challenges in defining the population in need, and by limited available data. The objective of this paper is to summarise how population-level CPC need is defined, and quantified, in the literature. METHODS: Scoping review performed in line with Joanna Briggs Institute methodology for scoping reviews and PRISMA-ScR guidelines. Six online databases (CINAHL, Cochrane Library, EMBASE, Medline, PsycINFO, and Web of Science), and grey literature, were searched. INCLUSION CRITERIA: literature published in English; 2008-2023 (Oct); including children aged 0-19 years; focused on defining and/or quantifying population-level need for palliative care. RESULTS: Three thousand five hundred seventy-eight titles and abstracts initially reviewed, of which, 176 full-text studies were assessed for eligibility. Overall, 51 met the inclusion criteria for this scoping review. No universal agreement identified on how CPC need was defined in population-level policy and planning discussions. In practice, four key definitions of CPC need were found to be commonly applied in quantifying population-level need: (1) ACT/RCPCH (Association for Children with Life-Threatening or Terminal Conditions and their Families, and the Royal College of Paediatrics and Child Health) groups; (2) The 'Directory' of Life-Limiting Conditions; (3) 'List of Life-Limiting Conditions'; and (4) 'Complex Chronic Conditions'. In most cases, variations in data availability drove the methods used to quantify population-level CPC need and only a small proportion of articles incorporated measures of complexity of CPC need. CONCLUSION: Overall, greater consistency in how CPC need is defined for policy and planning at a population-level is important, but with sufficient flexibility to allow for regional variations in epidemiology, demographics, and service availability. Improvements in routine data collection of a wide range of care complexity factors could facilitate estimation of population-level CPC need and ensure greater alignment with how need for CPC is defined at the individual-level in the clinical setting.

Safety, resource use and nutritional content of home-blended diets in children who are gastrostomy fed: findings from 'YourTube' - a prospective cohort study.

OBJECTIVE: To assess the risks, benefits and resource implications of using home-blended food in children with gastrostomy tubes compared with currently recommended formula feeds. DESIGN: This is a cohort study. Data were collected at months 0, 12 and 18 from parents and clinicians using standardised measures. SETTING: 32 sites across England: 28 National Health Service trusts and 4 children's hospices. PATIENTS: Children aged 6 months-18 years who were gastrostomy fed. MAIN OUTCOME MEASURE: The main outcome measure was the PedsQL Gastrointestinal Symptoms Scales score. Secondary outcomes included quality of life, sleep (child, parent), dietary intake, anthropometry, healthcare usage, safety outcomes and resource use. RESULTS: 180 children and families completed the baseline data collection, with 134 (74%) and 105 (58%) providing follow-up data at 12 and 18 months. There were fewer gastrointestinal (GI) symptoms at all time points in the home-blended diet group, but there was no difference in change over time within or between the groups. The nutritional intake of those on a home-blended diet had higher calories per kilogram and fibre, and both home-blended and formula-fed children have values above the dietary reference values for most micronutrients. Safety outcomes were similar between groups and over time. The total costs to the statutory sector were higher among children who were formula fed, but the costs of purchasing special equipment for home-blended food and the total time spent on childcare were higher for families with home-blended diet. CONCLUSIONS: Children who are gastrostomy fed a home-blended diet have similar safety profile, adequate nutritional intake and lower burden of GI symptoms than formula-fed children. Trial registration number ISRCTN13977361.