Navigating Uncertainty: Health Professionals' Knowledge, Skill and Confidence in Assessing and Managing Pain in Children with Profound Cognitive Impairment

There is limited evidence to underpin the assessment and management of pain in children with profound cognitive impairment and these children are vulnerable to poor pain assessment and management. Health professionals working with children with profound cognitive impairment from a single paediatric tertiary referral centre in England were interviewed to explore how they develop and acquire knowledge and skills to assess and manage pain in children with cognitive impairment. The interviews were transcribed and subjected to thematic analysis. Nineteen health professionals representing different professional groups and different levels of experience participated in the study. A metatheme “navigating uncertainty; deficits in knowledge and skills” and two core themes “framing as different and teasing things out” and “the settling and unsettling presence of parents” were identified. Uncertainty about aspects of assessing and managing the pain of children with cognitive impairment tended to erode professional confidence and many discussed deficits in their skill and knowledge set. Uncertainty was managed through engaging with other health professionals and the child’s parents. Most health professionals stated they would welcome more education and training although many felt that this input should be clinical and not classroom oriented

Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers' Perspectives

Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child's pain. Eight mothers completed a weekly pain diary and were interviewed at weeks 1 and 8. Qualitative data were analysed using thematic analysis and the quantitative data using descriptive statistics. Mothers talked of learning through a system of trial and error ("learning to get on with it"); this was accomplished through "learning to know without a rule book or guide"; "learning to be a convincing advocate"; and "learning to endure and to get things right." Experiential and reflective learning was evident in the way the mothers developed a "sense of knowing" their child's pain. They drew on embodied knowledge of how their child usually expressed and responded to pain to help make pain-related decisions. Health professionals need to support mothers/parents to develop their knowledge and skills and to gain confidence in pain assessment and they should recognise and act on the mothers' concerns

Autism Spectrum Disorder (ASD): Improving Community Services Recommendations Report from the ASD Special Interest Group

Executive Summary and Key Recommendations In 2011, the National Institute for Health and Care Excellence (NICE) published guidelines for the recognition, referral and diagnosis of children and young people on the autistic spectrum1. NICE recommended that each local area establish co-ordinated multidisciplinary and multi-agency referral, assessment and diagnostic pathways (hereafter referred to as the “pathway”) for children with a suspected ASD. In February 2014, the Cheshire and Merseyside Strategic Clinical Network (CMSCN) established an Autistic Spectrum Disorder (ASD) Special Interest Group (SIG) to review community services for children with ASD and their families in the Cheshire and Merseyside region. The aim of the SIG was to: 1. Identify and map current multi-agency pathways from diagnosis to transition for Children and Young People (CYP) with Autistic Spectrum Disorder (ASD) 2. Review existing Parent Support Programmes for CYP aged 11-15 years with ASD 3. Develop a process to allow measurement of CYP and family experience The SIGs programme of work was originally intended to run until March 2016. However, ongoing changes to national service improvement policy and the adaptation of Strategic Clinical Network (SCN) priorities meant the SIGs work programme was condensed to one year with an aim to complete by March 2015. As a result, work on aims 2 and 3 were “paused” with acknowledgement and scope for wider stakeholders to explore these issues further. Key Findings There was considerable variation in the availability and quality of referral pathways within the Cheshire and Merseyside region and it was difficult to establish to what extent some referral pathways were meeting NICE guideline recommendations. Parents reported poor access to services and frustration and confusion with the referral pathway. With a few exceptions, the voluntary sector was largely disengaged from the process. Those that gave a reason for not engaging with the process cited a feeling of repeated broken policy promises and raised expectations that were not subsequently met. There was variable but significant pressure on resources and some areas were unable to meet parent expectations or to meet the NICE recommendation. There was considerable expertise in ASD and a passion across all voluntary, health, education and social care agencies to improve services for children with ASD and their families. v Key Outcomes A standard blueprint referral pathway template that maps onto NICE guidelines recommendation. A parent and carer information leaflet which can be used at point of referral. An initial assessment of parent’s priorities during the referral pathway with the aim of informing the development of a tool for measuring parents’ experience. Key Recommendations Clinical Commissioning Groups (CCGs) to refer to NICE guidance and ensure that there is a suitable ASD pathway in place for referral, assessment and diagnosis of children with a suspected ASD in their area. CCGs to consider workforce and training needs review, to ensure there is sufficient experience and expertise to meet NICE guidelines. CCGs that are due to review or renew their ASD pathway or are developing new process, give consideration to using the blueprint pathway template. CCGs to tailor the blueprint pathway template to local needs following a detailed analysis of current local services and gaps. CCGs to give consideration to the results of the parent survey when developing their pathway and when developing tools to measures parent experience. CCGs to consider developing and expanding on patient and public involvement (PPI) within their catchment area where possible, taking into account families under pressure may need additional support to engage in PPI processes. CCGs to consider using the parent information leaflet to provide preliminary information and signposting to support for parents at the point of referral

PO-0954 Click! Engaging Children In Research About Their Lives: Experiences Of Using Photo-elicitation From England, Australia And New Zealand

Background and aims. Engaging children in research about their lives is an essential component of providing excellent health care services. Utilising participatory, visual/arts-based approaches such as photo-elicitation (PE) can extend opportunities for children to reflect on and talk about their lives. This paper aims to explore the use of, benefits and issues associated with using PE with children. Methods. PE is a participatory, qualitative method that does not rely on high levels of verbal or written literacy and which creates equitable conditions for children’s engagement in research. Within a broad brief, children are asked to take topic-related photos. Apart from safety/privacy related guidance about where it might not be appropriate to take photographs, the children are free to take any image that has meaning to them. The children then select the images they wish to discuss and the researcher literally has to ‘follow’ the children’s data and adopt a flexible approach to the conversational interview. Results. Reflecting on our experience with PE we note how the quality of discussion is enhanced and intriguing and unexpected insights into children’s lives are revealed. What children choose to photograph or omit can create interesting tensions; these and other lessons will be shared along with exemplar photographs and stories. Conclusions. Although PE provides considerable opportunities and benefits, it is challenging research to be part of and requires skilled researchers to ensure children are safe during research engagement and that the data provides a robust depth of insight into their lives

ADRIC: Adverse Drug Reactions In Children - a programme of research using mixed methods

Aims To comprehensively investigate the incidence, nature and risk factors of adverse drug reactions (ADRs) in a hospital-based population of children, with rigorous assessment of causality, severity and avoidability, and to assess the consequent impact on children and families. We aimed to improve the assessment of ADRs by development of new tools to assess causality and avoidability, and to minimise the impact on families by developing better strategies for communication. Review methods Two prospective observational studies, each over 1 year, were conducted to assess ADRs in children associated with admission to hospital, and those occurring in children who were in hospital for longer than 48 hours. We conducted a comprehensive systematic review of ADRs in children. We used the findings from these studies to develop and validate tools to assess causality and avoidability of ADRs, and conducted interviews with parents and children who had experienced ADRs, using these findings to develop a leaflet for parents to inform a communication strategy about ADRs. Results The estimated incidence of ADRs detected in children on admission to hospital was 2.9% [95% confidence interval (CI) 2.5% to 3.3%]. Of the reactions, 22.1% (95% CI 17% to 28%) were either definitely or possibly avoidable. Prescriptions originating in the community accounted for 44 out of 249 (17.7%) of ADRs, the remainder originating from hospital. A total of 120 out of 249 (48.2%) reactions resulted from treatment for malignancies. Off-label and/or unlicensed (OLUL) medicines were more likely to be implicated in an ADR than authorised medicines [relative risk (RR) 1.67, 95% CI 1.38 to 2.02; p  48 hours, the overall incidence of definite and probable ADRs based on all admissions was 15.9% (95% CI 15.0 to 16.8). Opiate analgesic drugs and drugs used in general anaesthesia (GA) accounted for > 50% of all drugs implicated in ADRs. The odds ratio of an OLUL drug being implicated in an ADR compared with an authorised drug was 2.25 (95% CI 1.95 to 2.59; p < 0.001). Risk factors identified were exposure to a GA, age, oncology treatment and number of medicines. The systematic review estimated that the incidence rates for ADRs causing hospital admission ranged from 0.4% to 10.3% of all children [pooled estimate of 2.9% (95% CI 2.6% to 3.1%)] and from 0.6% to 16.8% of all children exposed to a drug during hospital stay. New tools to assess causality and avoidability of ADRs have been developed and validated. Many parents described being dissatisfied with clinician communication about ADRs, whereas parents of children with cancer emphasised confidence in clinician management of ADRs and the way clinicians communicated about medicines. The accounts of children and young people largely reflected parents’ accounts. Clinicians described using all of the features of communication that parents wanted to see, but made active decisions about when and what to communicate to families about suspected ADRs, which meant that communication may not always match families’ needs and expectations. We developed a leaflet to assist clinicians in communicating ADRs to parents. Conclusion The Adverse Drug Reactions In Children (ADRIC) programme has provided the most comprehensive assessment, to date, of the size and nature of ADRs in children presenting to, and cared for in, hospital, and the outputs that have resulted will improve the management and understanding of ADRs in children and adults within the NHS. Recommendations for future research: assess the values that parents and children place on the use of different medicines and the risks that they will find acceptable within these contexts; focusing on high-risk drugs identified in ADRIC, determine the optimum drug dose for children through the development of a gold standard practice for the extrapolation of adult drug doses, alongside targeted pharmacokinetic/pharmacodynamic studies; assess the research and clinical applications of the Liverpool Causality Assessment Tool and the Liverpool Avoidability Assessment Tool; evaluate, in more detail, morbidities associated with anaesthesia and surgery in children, including follow-up in the community and in the home setting and an assessment of the most appropriate treatment regimens to prevent pain, vomiting and other postoperative complications; further evaluate strategies for communication with families, children and young people about ADRs; and quantify ADRs in other settings, for example critical care and neonatology

The transition of adolescents with juvenile idiopathic arthritis or epilepsy from paediatric health-care services to adult health-care services: A scoping review of the literature and a synthesis of the evidence

Young people with long-term health conditions (LTCs) can face challenges when making the transition to adult health services. This paper sought to identify studies that assess and explore transitional care for young people with LTCs. Two conditions were used as exemplars: juvenile idiopathic arthritis (JIA) and epilepsy. A scoping review of the literature was conducted by using search terms to search for papers in English between 2001 and 2016 concerning transitional care on four databases. Qualitative papers were reviewed and synthesized using thematic analysis. Quantitative papers using health outcomes were also synthesized. Twenty-eight papers were selected for review. Despite the wealth of literature concerning aspects of transitional care that are key to a successful transition for young people with JIA or epilepsy, there is a paucity of outcomes that define ‘successful’ transition and consequently a lack of reliable research evaluating the effectiveness of transitional care interventions to support young people moving to adult health services

Development of the Liverpool Adverse Drug Reaction Avoidability Assessment Tool

Aim To develop and test a new tool to assess the avoidability of adverse drug reactions that is suitable for use in paediatrics but which is also applicable to a variety of other settings. Methods The study involved multiple phases. Preliminary work involved using the Hallas scale and a modification of the existing Hallas scale, to assess two different sets of adverse drug reaction (ADR) case reports. Phase 1 defined, modified and refined a new tool using multidisciplinary teams. Phase 2 involved the assessment of 50 ADR case reports from a prospective study of paediatric inpatients by individual assessors. Phase 3 compared assessments with the new tool for individuals and groups in comparison to the ‘gold standard’ (the avoidability outcome set by a panel of senior investigators: an experienced clinical pharmacologist, paediatrician and pharmacist). Main Outcome Measures Inter-rater reliability (IRR), measure of disagreement and utilization of avoidability categories. Results Preliminary work—Pilot phase: results for the original Hallas cases were fair and pairwise kappa scores ranged from 0.21 to 0.36. Results for the modified Hallas cases were poor, pairwise kappa scores ranged from 0.06 to 0.16. Phase 1: on initial use of the new tool, agreement between the two multidisciplinary groups was found on 13/20 cases with a kappa score of 0.29 (95% CI -0.04 to 0.62). Phase 2: the assessment of 50 ADR case reports by six individual reviewers yielded pairwise kappa scores ranging from poor to good 0.12 to 0.75 and percentage exact agreement (%EA) ranged from 52–90%. Phase 3: Percentage exact agreement ranged from 35–70%. Overall, individuals had better agreement with the ‘gold standard’. Conclusion Avoidability assessment is feasible but needs careful attention to methods. The Liverpool ADR avoidability assessment tool showed mixed IRR. We have developed and validated a method for assessing the avoidability of ADRs that is transparent, more objective than previous methods and that can be used by individuals or groups

Effect of angiotensin-converting enzyme inhibitor and angiotensin receptor blocker initiation on organ support-free days in patients hospitalized with COVID-19

IMPORTANCE Overactivation of the renin-angiotensin system (RAS) may contribute to poor clinical outcomes in patients with COVID-19. Objective To determine whether angiotensin-converting enzyme (ACE) inhibitor or angiotensin receptor blocker (ARB) initiation improves outcomes in patients hospitalized for COVID-19. DESIGN, SETTING, AND PARTICIPANTS In an ongoing, adaptive platform randomized clinical trial, 721 critically ill and 58 non–critically ill hospitalized adults were randomized to receive an RAS inhibitor or control between March 16, 2021, and February 25, 2022, at 69 sites in 7 countries (final follow-up on June 1, 2022). INTERVENTIONS Patients were randomized to receive open-label initiation of an ACE inhibitor (n = 257), ARB (n = 248), ARB in combination with DMX-200 (a chemokine receptor-2 inhibitor; n = 10), or no RAS inhibitor (control; n = 264) for up to 10 days. MAIN OUTCOMES AND MEASURES The primary outcome was organ support–free days, a composite of hospital survival and days alive without cardiovascular or respiratory organ support through 21 days. The primary analysis was a bayesian cumulative logistic model. Odds ratios (ORs) greater than 1 represent improved outcomes. RESULTS On February 25, 2022, enrollment was discontinued due to safety concerns. Among 679 critically ill patients with available primary outcome data, the median age was 56 years and 239 participants (35.2%) were women. Median (IQR) organ support–free days among critically ill patients was 10 (–1 to 16) in the ACE inhibitor group (n = 231), 8 (–1 to 17) in the ARB group (n = 217), and 12 (0 to 17) in the control group (n = 231) (median adjusted odds ratios of 0.77 [95% bayesian credible interval, 0.58-1.06] for improvement for ACE inhibitor and 0.76 [95% credible interval, 0.56-1.05] for ARB compared with control). The posterior probabilities that ACE inhibitors and ARBs worsened organ support–free days compared with control were 94.9% and 95.4%, respectively. Hospital survival occurred in 166 of 231 critically ill participants (71.9%) in the ACE inhibitor group, 152 of 217 (70.0%) in the ARB group, and 182 of 231 (78.8%) in the control group (posterior probabilities that ACE inhibitor and ARB worsened hospital survival compared with control were 95.3% and 98.1%, respectively). CONCLUSIONS AND RELEVANCE In this trial, among critically ill adults with COVID-19, initiation of an ACE inhibitor or ARB did not improve, and likely worsened, clinical outcomes. TRIAL REGISTRATION ClinicalTrials.gov Identifier: NCT0273570

Supporting parents of children who have complex needs to assess and manage their children's pain: health care practitioners' perspectives.

Aim: The aim of this paper is to present findings on the ways in which health care practitioners who work with children with complex needs can support parents in assessing and managing their child’s pain. Methods: The data reported here are from semi-structured interviews undertaken with health care practitioners based at a tertiary children’s hospital in the UK. These data are part of a larger mixed methods study. Data were analysed using thematic analysis. Results: Nineteen healthcare practitioners from a variety of disciplinary backgrounds (e.g. neurologists, nurses, physiotherapists) and with different experience (1–27 years) of working with children with complex needs participated in the study. Only one of the nineteen practitioners interviewed had had formal training on the management of pain in children with complex needs. Practitioners reported taking a multi-layered approach to managing pain in children with complex needs, which meant including parents, using skills of observation and referring to other members of the multidisciplinary team. The practitioners supported parents in the management of their child’s pain by engaging with them, listening to them and also managing their expectations, although it was noted that parents’ relationships with nurses could be problematic. Most practitioners felt parents had a central role in the management of their child’s pain, although it was noted the role could vary and that the multidisciplinary team needed to provide opportunities for parents to give feedback. Practitioners felt that parents had a critical knowledge of their child’s pain but not of pain itself. It was suggested that a critical knowledge of their child’s pain takes time to develop and that some parents can misread pain cues. Most practitioners felt that parents did not receive adequate training and support to manage their child’s pain. Conclusion: Practitioners value the knowledge of parents of children with complex needs and acknowledge the central role parents play in managing their child’s pain. However, there is a need for practitioners to have formal education in the management of pain in children with complex needs so that they in turn can provide training and support for parents

P10 Factors predicting patients' intention to join cancer support groups and their perceptions of the most useful group formats

Background Trials have demonstrated that patients benefit from participation in cancer support groups. However, only a minority of patients join groups. Better understanding of factors predicting patients' intention to join groups and their preferred group formats is required to aid strategies to increase support group attendance and ensure that groups are suited to patients' preferences. Objective To investigate variables predicting patients' intention to join cancer support groups and the support group formats they would find most useful. Design Self-completed questionnaires. Factor analysis of patients' perceptions of support groups and the group formats perceived to be most useful. Comparison of patients intending and not intending to join groups and bi-variate correlation analyses of variables associated with preferred group format, using non-parametric and parametric analysis as appropriate. Setting Recruitment through oncology outpatient clinics shortly after diagnosis. Participant 192 patients with cancer of the colon (105), lung (57) or bladder (30). Of these, 67% were male and 33% female. Main Measures Demographic and clinical variables, perceived social support (MSPSS), perceived control and distress over cancer (IPQ-R), strategies for coping with cancer (Brief COPE), functioning and symptoms (EORTC QLQ C30), views and preferences regarding support groups (questionnaires designed from qualitative patient interviews). Results Variables predicting participants' intention to join a group included worse family support, higher distress, coping through instrumental support seeking and little perceived difficulty in joining. Factors predicting preference for patient-led, emotion-focused groups included being female, higher distress, worse functioning in several domains, and coping through planning, positive reframing, religion, instrumental support seeking, distraction and denial. Preference for professionally led, information-based groups related to active coping and acceptance, lower education and not having a partner. Preferences for both group formats and a general intention to participate were all related to having positive views of groups and being influenced by health professionals' recommendation of groups (all findings at p<0.05). More details of findings, results of multivariate analyses and data on whether patients actually joined a group will be presented at the conference. Conclusion Patients with different characteristics prefer different support group formats. It is therefore important to tailor group formats to the needs of different groups of patients. In all instances positive perceptions of groups and recommendation from a health professionals increased perceived usefulness of groups and patients' intention to join. Both promotion of a positive image of groups and the recommendation of health professionals should therefore help increase support group attendance