Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review

Background: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children’s services. The aim of this systematic review is to identify and synthesise existing evidence of the determinants, strategies, and mechanisms that influence the implementation of PCOMs into paediatric healthcare practice. Methods: The review was conducted and reported in accordance with PRISMA guidelines. Databased searched included CINAHL, Embase, Medline, and PsycInfo. Google scholar was also searched for grey literature on 25th March 2022. Studies were included if the setting was a children’s healthcare service, investigating the implementation or use of an outcome measure or screening tool in healthcare practice, and reported outcomes relating to use of a measure. Data were tabulated and thematically analysed through deductive coding to the constructs of the adapted-Consolidated Framework for Implementation Research (CFIR). Results were presented as a narrative synthesis, and a logic model developed. Results: We retained 69 studies, conducted across primary (n = 14), secondary (n = 13), tertiary (n = 37), and community (n = 8) healthcare settings, including both child self-report (n = 46) and parent-proxy (n = 47) measures. The most frequently reported barriers to measure implementation included staff lack of knowledge about how the measure may improve care and outcomes; the complexity of using and implementing the measure; and a lack of resources to support implementation and its continued use including funding and staff. The most frequently reported facilitators of implementation and continued use include educating and training staff and families on: how to implement and use the measure; the advantages of using PCOMs over current practice; and the benefit their use has on patient care and outcomes. The resulting logic model presents the mechanisms through which strategies can reduce the barriers to implementation and support the use of PCOMs in practice. Conclusions: These findings can be used to support the development of context-specific implementation plans through a combination of existing strategies. This will enable the implementation of PCOMs into routine paediatric healthcare practice to empower settings to better identify and improve child-centred outcomes. Trial registration: Prospero CRD 42022330013

Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands

Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. Objective: To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. Methods: Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. Results: Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. Conclusion: The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies

The Effects of Introducing a Harm Threshold for Medical Treatment Decisions for Children in the Courts of England & Wales: An (Inter)National Case Law Analysis

The case of Charlie Gard sparked an ongoing public and academic debate whether in court decisions about medical treatment for children in England & Wales the best interests test should be replaced by a harm threshold. However, the literature has scantly considered (1) what the impact of such a replacement would be on future litigation and (2) how a harm threshold should be introduced: for triage or as standard for decision-making. This article directly addresses these gaps, by first analysing reported cases in England & Wales about medical treatment in the context of a S31 order, thus using a harm threshold for triage and second comparing court decisions about medical treatment for children in England & Wales based on the best interest test with Dutch and German case law using a harm threshold. The investigation found that whilst no substantial increase of parental discretion can be expected an introduction of a harm threshold for triage would change litigation. In particular, cases in which harm is limited, currently only heard when there are concerns about parental decision-making, may be denied a court hearing as might cases in which the child has lost their capacity to suffer. Applying a harm threshold for triage in decisions about withholding or withdrawing life-sustaining treatment might lead to a continuation of medical treatment that could be considered futile

Can mediation avoid litigation in conflicts about medical treatment for children? An analysis of previous litigation in England and Wales:2023 Sep;108(9):715-718.

Objective: To investigate the reasons why parents disagree with their clinicians in cases reaching the court and to estimate the number of cases in which mediation might have avoided litigation.Design: Analysis of 83 published cases regarding medical treatment decisions for children initiated either by an NHS Trust or Local Authority between 1990 and 1 July 2022.Results: The analysis found that the main areas of contention are different value judgements, different interpretations of observable events such as the health of the child, their quality of life or burden of treatment and relational issues (ie, loss of trust). More than half of the cases are estimated not to have been preventable by mediation because either no conflict existed (n=13) or the parental decision was based on strongly held, mostly faith-based, views unlikely to be open for discussion (n=31).Conclusion: The potential of mediation to avoid future litigation may be more limited than hoped for

Limiting court involvement in end-of-life treatment decisions for children in England & Wales: advantages and limitations of a Specialist Committee deciding on futility.

Given the costs of litigation and distress for the parties involved, court cases about withdrawing life-sustaining medical treatment for children in England & Wales tend to be followed by discussion how to avoid future cases. Two proposals, mediation and the introduction of a harm threshold, have have been investigated as described above and seem unlikely to be able to limit court involvement.Under TADA life-sustaining treatment may be withdrawn when a review committee finds it futile and no alternative healthcare provider can be identified. The investigation finds that installing a national specialist review committee modelled after TADA would have reduced the number of court cases in England & Wales to a handful over the last 3 decades. In addition to shorter procedures and costs savings, a national specialist review committee has advantages for both clinicians and parents. Advantages for clinicians are more limited exposure to delivery of clinical care that may cause moral distress and less exposure to adverse press and social media content associated with court procedures. Advantages for parents are that the process would establish them as ethical decision makers in their own right and offer the possibility of a transfer of care provided an alternative healthcare provider can be found. Given the advantages the feasibility of a replacement of the courts by a specialist review committee deserves further investigation

H. pylori infection in childhood chronic immune thrombocytopenic purpura

Several studies have reported remission of immune thrombocytopenic purpura ( ITP) after eradication of a coexistent Helicobacter pylori infection in adults. Data in children are limited. Here we report the results of a prospective study of Helicobacter pylori determination and eradication in children with chronic ITP in the Netherland