In 2022, the WHO conditionally recommended the use of treatment decision algorithms (TDAs) for treatment decision-making in children
Within the Decide-TB project (PACT ID: PACTR202407866544155, 23 July 2024), we aim to generate an individual-participant dataset (IPD) from prospective TB diagnostic accuracy cohorts (RaPaed-TB, UMOYA and two cohorts from TB-Speed). Using the IPD, we aim to: (1) assess the diagnostic accuracy of published TDAs using a set of consensus case definitions produced by the National Institute of Health as reference standard (confirmed and unconfirmed vs unlikely TB); (2) evaluate the added value of novel tools (including biomarkers and artificial intelligence-interpreted radiology) in the existing TDAs; (3) generate an artificial population, modelling the target population of children eligible for WHO-endorsed TDAs presenting at primary and secondary healthcare levels and assess the diagnostic accuracy of published TDAs and (4) identify clinical predictors of radiological disease severity in children from the study population of children with presumptive TB.
This study will externally validate the first data-driven WHO TDAs in a large, well-characterised and diverse paediatric IPD derived from four large paediatric cohorts of children investigated for TB. The study has received ethical clearance for sharing secondary deidentified data from the ethics committees of the parent studies (RaPaed-TB, UMOYA and TB Speed) and as the aims of this study were part of the parent studies’ protocols, a separate approval was not necessary. Study findings will be published in peer-reviewed journals and disseminated at local, regional and international scientific meetings and conferences. This database will serve as a catalyst for the assessment of the inclusion of novel tools and the generation of an artificial population to simulate the impact of novel diagnostic pathways for TB in children at lower levels of healthcare. TDAs have the potential to close the diagnostic gap in childhood TB. Further finetuning of the currently available algorithms will facilitate this and improve access to care.
Patient-reported experience measures (PREMs) capture patients’ healthcare journey experiences. No validated PREMs are specific to vascular surgery patients. This study aims to develop and validate a vascular surgery-specific PREM to assess patient experience and satisfaction.
Patient Reported Experience Measures In Vascular Surgery Enhancement Study is a two-phase multisite sequential mixed-methods study. The qualitative phase will develop a draft PREM; the quantitative phase will validate it. The study will be conducted across three major vascular units in Wales. Up to 40 patients and healthcare professionals will participate in the qualitative phase. Approximately 150–200 patients will be recruited for the quantitative validation. Inclusion criteria are: (1) age ≥18; (2) recent vascular procedure; (3) inpatient vascular care; (4) not cognitively impaired; (5) consent to participate and (6) English or Welsh proficiency. Primary outcomes will be construct validity and reliability. Secondary outcomes will include patient engagement, healthcare provider perspectives and health system impacts. Thematic analysis will be conducted using NVivo. Psychometric validation will include item analysis, internal consistency testing and factor analysis.
The study was approved by the London—Camberwell St Giles Research Ethics Committee, coordinated by the Health Research Authority and Health and Care Research Wales (REC reference: 24/PR/0522).
Children with medical complexity (CMC) frequently experience acute deterioration requiring paediatric intensive care unit (PICU) hospitalisation. Collaboration between families and healthcare professionals (HCPs) is vital yet often challenging, suggesting a new care approach is needed. This study explored the PICU care experiences of CMC, parents and HCPs and identified common priorities and practice changes to enhance care.
An experience-based co-design (EBCD) approach was used. Semistructured interviews were conducted with CMC and parents (stage 1) and HCPs (stage 2). A co-design event with parents and HCPs followed (stage 3).
Interviews took place in family homes, hospital meeting rooms and virtually. The co-design event took place at the hospital.
Interviews: CMC and parents (n=21, 13 families) within 1 year of their most recent PICU discharge. PICU and complex care service HCPs (n=15). Co-design event: parents and HCPs (n=22). Maximum variation sampling was used.
Stage 1: Child and family-related themes included becoming known, becoming a parent caregiver or child care receiver, establishing caregiver relationships, and expecting a responsive and dignified caregiving environment. Stage 2: HCP-related themes included adapting to a different care approach, positioning parents as collaborators, navigating personal connections, and providing continuity of care. Stage 3: Two videos (sharing child and family perspectives, and HCPs’ perspectives) were produced to promote discussion at the co-design event. Common care priorities included increase HCPs’ awareness of who the child is when they are well; improve interdepartmental communication; enhance HCPs’ understanding of families’ expertise and needs; enhance parent-HCP partnerships and develop HCP training programmes. Potential practice changes were identified.
Participants identified the need for a collaborative approach to care for critically ill CMC, integrating the expertise of children, parents and HCPs. EBCD can help ground the perspectives and needs of HCPs, children and families in future PICU patient and family-centred care interventions.