Understanding parents' experiences of care for children with medical complexity in England: a qualitative study.

OBJECTIVES: To understand parents' experiences of receiving care for their child with medical complexity. DESIGN: Qualitative semi-structured interviews with parents of children with medical complexities across England analysed using reflexive thematic analysis. RESULTS: Twenty parents from four hospital sites in England took part in the study, a total of 17 interviews were completed, 3 joint and 14 single parent interviews. Four themes were developed: parents feel abandoned; continuity of care (made up of three subthemes); equipment barriers; and charities fill the gaps. CONCLUSIONS: The perceived quality of healthcare provided to this population was found to be inconsistent, positive examples referred to continuity of care; communication, clinical management and long-lasting relationships. However, many experienced challenges when receiving care for their children; many of these challenges have been highlighted over the past two to three decades but despite the children's needs becoming more complex, little progress appears to have been made. Parents were seen as adopting significant additional roles beyond being a parent, but they still find themselves left without support across all areas. These families require more structured support. Policy makers and commissioners need to prioritise the needs of families to enable health and social care services to provide the support required.

Healthcare utilisation in overweight and obese children: a systematic review and meta-analysis.

OBJECTIVE: This systematic review and meta-analysis aims to systematically analyse the association of overweight and obesity with health service utilisation during childhood. DATA SOURCES: PubMed, MEDLINE, CINAHL, EMBASE and Web of Science. METHODS: Observational studies published up to May 2020 that assessed the impact of overweight and obesity on healthcare utilisation in children and adolescents were included. Studies were eligible for inclusion if the included participants were ≤19 years of age. Findings from all included studies were summarised narratively. In addition, rate ratios (RRs) and 95% CIs were calculated in a meta-analysis on a subgroup of eligible studies. OUTCOME MEASURES: Included studies reported association of weight status with healthcare utilisation measures of outpatient visits, emergency department (ED) visits, general practitioner visits, hospital admissions and hospital length of stay. RESULTS: Thirty-three studies were included in the review. When synthesising the findings from all studies narratively, obesity and overweight were found to be positively associated with increased healthcare utilisation in children for all the outcome measures. Six studies reported sufficient data to meta-analyse association of weight with outpatient visits. Five studies were included in a separate meta-analysis for the outcome measure of ED visits. In comparison with normal-weight children, rates of ED (RR 1.34, 95% CI 1.07 to 1.68) and outpatient visits (RR 1.11, 95% CI 1.02 to 1.20) were significantly higher in obese children. The rates of ED and outpatient visits by overweight children were only slightly higher and non-significant compared with normal-weight children. CONCLUSIONS: Obesity in children is associated with increased healthcare utilisation. Future research should assess the impact of ethnicity and obesity-associated health conditions on increased healthcare utilisation in children with overweight and obesity. PROSPERO REGISTRATION NUMBER: CRD42018091752.

Health of mothers of children with a life-limiting condition: a protocol for comparative cohort study using the Clinical Practice Research Datalink.

INTRODUCTION: There are now nearly 50 000 children with a life-limiting or life-threatening condition in the UK. These include conditions where there is no reasonable hope of cure and from which they will die, as well as conditions for which curative treatment may be feasible but can fail, for example, cancer or heart failure. Having a child with a life-limiting condition involves being a coordinator and provider of healthcare in addition to the responsibilities and pressures of parenting a child who is expected to die young. This adversely affects the health and well-being of these mothers and affects their ability to care for their child, but the extent of the impact is poorly understood.This study aims to quantify the incidence and nature of mental and physical morbidity in mothers of children with a life-limiting condition, their healthcare use and to assess whether there is a relationship between the health of the mother and the child's condition. METHODS AND ANALYSIS: A comparative cohort study using data from the Clinical Practice Research Datalink and linked hospital data will include three groups of children and their mothers (those with a life-limiting condition, those with a chronic condition and those with no long-term health condition total=20 000 mother-child dyads). Incidence rates and incidence rate ratios will be used to quantify and compare the outcomes between groups with multivariable regression modelling used to assess the relationship between the child's disease trajectory and mother's health. ETHICS AND DISSEMINATION: This study protocol has approval from the Independent Scientific Advisory Committee for the UK Medicines and Healthcare products Regulatory Agency Database Research. The results of this study will be reported according to the STROBE and RECORD guidelines. There will also be a lay summary for parents which will be available to download from the Martin House Research Centre website (www.york.ac.uk/mhrc).

A protocol for a systematic review and meta-analysis to identify measures of breakthrough pain and evaluate their psychometric properties.

INTRODUCTION: Breakthrough pain is common in children and adults with cancer and other conditions, including those approaching end-of-life, although it is often poorly managed, possibly partly due to a lack of validated assessment tools. This review aims to (1) identify all available instruments measuring breakthrough pain in infants, children, adolescents or adults and (2) critically appraise, compare and summarise the quality of the psychometric properties of the identified instruments using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria. METHODS AND ANALYSIS: Two searches will be carried out between October 2019 and January 2020, one for each aim of the review. The Cochrane Library, International Prospective Register of Systematic Reviews, Embase, Cumulative Index of Nursing and Allied Health Literature, Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, Web of Science Core Collection, Google Scholar, the ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey databases will be searched from database inception until the date the search is conducted. Reference lists of eligible articles will be screened and authors in the field contacted. For search 1, articles will be screened by two reviewers by abstract, and full-text where necessary, to identify if a breakthrough pain assessment was used. Search 2 will then be conducted to identify studies evaluating measurement properties of these assessments. Two reviewers will screen articles from search 2 by title and abstract. All potentially relevant studies will be screened by full text by both reviewers. For search 2, data will be extracted in parallel with the quality assessment process, as recommended by COSMIN. Two reviewers will assess methodological quality using the COSMIN Risk of Bias checklist and the COSMIN updated criteria for good measurement properties. Findings will be summarised and, if possible, data will be pooled using meta-analysis. The quality of the evidence will be graded and summarised using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) guidelines. ETHICS AND DISSEMINATION: Results of this review will be submitted for publication in a peer review journal and presented at conferences. PROSPERO REGISTRATION NUMBER: CRD42019155583.

'Your Tube': the role of different diets in children who are gastrostomy fed: protocol for a mixed methods exploratory sequential study.

INTRODUCTION: Increasing numbers of children require having all, or part, of their nutritional intake via gastrostomy. More parents are using home-blended meals to feed their children, with many reporting beneficial effects such as improved gastro-oesophageal reflux, less constipation and less distress in their child.This study aims to identify the important outcomes of tube feeding in this population, compare the safety, outcomes and resource use of those on a home-blended diet compared with a formula diet and assess feasibility of long-term follow-up of children recruited to this study. METHODS AND ANALYSES: This is a mixed methods study of children (aged 6 months to 18 years) who are gastrostomy feed dependent recruited via general, community and specialist paediatric and dietetic services. Workstream1 (WS1): a qualitative study involving semistructured interviews with parents (n~20) and young people (n~5-10), and focus groups with health professionals (n~25), will provide evidence of appropriate outcome measures and the feasibility/acceptability of proposed data collection methods for WS2. It will gather data on: desired outcomes of gastrostomy feeding, variability in diets and reasons; use of oral feeding; perceived benefits of the alternative diets, resources associated with gastrostomy feeding and safety issues. Data will be analysed using thematic analysis. WS2: a cohort study of 300 children who are gastrostomy fed. Data will be collected at months 0, 9 and 18 from parents, children (if appropriate) and clinicians using standardised measures and questionnaires developed specifically for the study. Data collected will include gastrointestinal symptoms, health and other outcomes (child, parent), dietary intake, anthropometry, healthcare usage, safety outcomes and resource use. Outcomes in the home-blended and formula groups will be compared using appropriate multiple regression analyses. ETHICS AND DISSEMINATION: The study has been approved by a research ethics committee (REC reference: 19/YH/0028). Results will be disseminated through publications and presentations for professionals and families. STUDY REGISTRATION NUMBER: ISRCTN13977361.