Priority setting for children and young people with chronic conditions and disabilities

Background

The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them.

Methods

We conducted a three-stage study based on the James Lind Alliance priority-setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia.

Results

In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis.

Conclusions

The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area.

Patient or Public Contribution

This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD.     

两种方法评估肝硬化病人营养状况及其与肌肉减少症的关联性

目的比较全球领导人营养不良倡议( GLIM)标准和英国皇家自由医院 -营养优先工具( RFH-NPT)在评估肝硬化病人营养不良中的应用，并分析其与肌少症的关联性。方法 2020年 1月至 2021年 12月采用系统抽样方法抽取宜宾市第二人民医院肝硬化病人 173例，采用营养风险筛查工具 2002(NRS 2002)和 RFH-NPT筛查病人营养风险， GLIM标准诊断病人营养不良，并分析各方法诊断结果的一致性和与肌少症的关联性。结果肝硬化病人 NRS 2002和 RFH-NPT评分分别为( 3.43±0.53)和(1.48±0.36)分，两方法筛查出营养风险发生率分别为 78.6%和 85.6%，年龄越大和 Child-pugh分级越高营养风险发生率越高(P<0.05)。以 GLIM标准确诊营养不良阳性率为 72.8%，肌少症发生率为 53.2%，不同年龄段和 Child-pugh分级营养不良发生率差异有统计学意义( P<0.05)。RFH-NPT与 NRS 2002营养风险筛查、 GLIM标准诊断营养不良的 Kappa值分别为 0.61和 0.45，一致性一般。 RFH-NPT评分与骨骼肌质量指数( SMI)呈负相关，其关联系数 r为0.51(P<0.01)。配对 χ2检验显示: GLIM标准诊断营养不良、 NRS 2002和 RFH-NPT筛查营养风险与肌少症之间的列联系数分别为 0.50、0.29和 0.20(P<0.01)。结论肝硬化病人营养风险、营养不良和肌少症发生率高，采用 NRS 2002、RFH-NPT和 GLIM标准评估病人营养风险和营养不良与病人肌少症有一定关联性。     

Patient research priority setting partnership in human T-cell lymphotropic virus type I

Introduction

Human T-cell lymphotropic virus type 1 (HTLV-1) is a chronic infection affecting 5–10 million people worldwide. Ten percent develop HTLV-1-associated diseases, and 3%–5% develop HTLV-1-associated myelopathy (HAM)/tropical spastic paraparesis. Low health-related quality of life (HRQoL) is a significant concern for those with HTLV-1, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV-1 health service provision.

Methods

Participants recruited through HTLV-1 clinics in England attended six 90-min virtual workshops over 10 months, and two 60-min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video-recorded with consent, transcribed verbatim and thematically analysed. Using consensus voting rounds, participants individually ranked their top six and then collectively their top three research priorities from the themes inferred from the analysis. A final feedback session explored the experiences of participating in the workshops.

Findings

Twenty-seven people with HTLV-1 engaged with the workshops with up to 22 participants attending each meeting. The majority were diagnosed with HAM (n = 22). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued being asked to set research priorities that directly addressed their needs and enjoyed the workshops. They stressed the importance of patient advocates for promoting research that positively impacts everyday life.

Conclusion

This is the first of this type of research engagement with people with HTLV-1 in the United Kingdom. Participants identified several avenues of investigation that could lead to improvements in healthcare services and HRQoL. Participants believed the workshops signified the start of a conversation to progress person-centred and meaningful research in HTLV-1.

Patient or Public Contribution

People living with HTLV-1 were involved in the iterative design, conduct, analysis, writing and dissemination of this project through the patient involvement workshops. As a result of this engagement, a patient led advisory group has been set up to assist with the dissemination of the findings.     

Identifying the asthma research priorities of people with asthma,their carers and other stakeholders

Background and Objective

People living with asthma, their carers, clinicians and policymakers are the end-users of research and need research that address their individual healthcare needs. We aimed to understand the research priorities of end-users of asthma research.

Methods

A national cross-sectional mixed-methods study was conducted. The study included an online survey that engaged patients, carers, healthcare professionals and policymakers to provide statements to free-text questions about what they would like to see answered by research to improve living with asthma on a day-to-day basis. Responses where thematically analysed followed by three online priority setting consensus workshops.

Results

There were 593 respondents who provided 1446 text comments. Participants prioritized 10 asthma research themes which were: (1) asthma in children, (2) COVID 19 and asthma, (3) asthma care and self-management, (4) diagnosis and medication, (5) managing asthma attacks, (6) causes, prevention and features of asthma, (7) mental health, (8) asthma and ageing, (9) severe asthma, (10) asthma and other health conditions. Each theme comprises specific research questions.

Conclusion

This project successfully established 10 priority research themes for asthma, reflecting the collective voice of the end-users of this research. These novel data can be used to address the documented mismatch in research prioritization between the research community and the end-users of research.     

Lassa fever vaccine candidates: A scoping review of vaccine clinical trials

Objective

Lassa fever (LF) is caused by a viral pathogen with pandemic potential. LF vaccines have the potential to prevent significant disease in individuals at risk of infection, but no such vaccine has been licensed or authorised for use thus far. We conducted a scoping review to identify and compare registered phase 1, 2 or 3 clinical trials of LF vaccine candidates, and appraise the current trajectory of LF vaccine development.

Method

We systematically searched 24 trial registries, PubMed, relevant conference abstracts and additional grey literature sources up to 27 October 2022. After extracting key details about each vaccine candidate and each eligible trial, we qualitatively synthesised the evidence.

Results

We found that four LF vaccine candidates (INO-4500, MV-LASV, rVSV∆G-LASV-GPC, and EBS-LASV) have entered the clinical stage of assessment. Five phase 1 trials (all focused on healthy adults) and one phase 2 trial (involving a broader age group from 18 months to 70 years) evaluating one of these vaccines have been registered to date. Here, we describe the characteristics of each vaccine candidate and trial and compare them to WHO's target product profile for Lassa vaccines.

Conclusion

Though LF vaccine development is still in early stages, current progress towards a safe and effective vaccine is encouraging.     

国外卫生资源分配的公众参与研究：基于卫生优先级制定理论的思考

卫生资源合理分配是卫生政策制定的难题之一,卫生优先级制定理论为此提供解决方法。优先级制定所涉及的公众参与理论研究,将有助于增强我国卫生资源分配政策制定的透明度和有效性。     

Challenges experienced during pharmacy automation and robotics implementation in JCI accredited hospital in the Arabian Gulf area: FMEA analysis-qualitative approach

BackgroundPharmacy automation and robotics implementation are essential aspects of healthcare facilities. It streamlines the medication dispensing process and significantly reduces medication errors. However, implementing automation and robotics in pharmacies comes with its challenges. We aim to detect and rectify potential dangers in the pharmacy workflow by utilizing the Failure Mode and Effects Analysis (FMEA) methodology; this is expected to augment performance and increase profitability.Materials and methodsIn this study, we conducted an FMEA analysis using a qualitative approach to identify the challenges experienced during pharmacy automation and robotics implementation in a Joint Commission International (JCI) accredited hospital in the Arabian Gulf area. The pharmacy processes and procedures were mapped in a Flow chart to visualize the pharmacy workflow, including highlighting the risks that were found. Then these risks were arranged as Potential failure modes and added to the table as 9 main points for each RPNs were calculated, and then the 9 points were prioritized for the action plans.ResultsVia applying traditional Risk Priority Number (RPN) FMEA, the Pharmacy board identified the process stages marked risky failure modes through several FMEAs, calculating the total RPNs at the implementation phase. It revealed several challenges, including staff training, technical issues, and inadequate communication. Furthermore, the study resulted in corrective and intervention steps.ConclusionPharmacy automation and robotics implementation is a complex process that requires proper planning, preparation, and execution. The FMEA approach effectively identifies potential problems and evaluates their impact on the pharmacy system. Nine major failure modes appeared to be risky stages with high RPN scores. Therefore, multiple interventions were done during the implementation to enhance the knowledge of challenges faced during the implementation of the automation process and solve it. Future studies should address the identified challenges and develop strategies to mitigate them.     

卫生研究优先领域设置方法介绍及在中医药研究领域的应用建议

卫生研究优先领域设置是基于现有疾病负担或医疗需求，以科学、系统的方法筛选出研究优先级相对较高的特定领域或主题，并通过影响卫生决策来来优化卫生资源配置，从而缓解地区或全球卫生与发展不平衡的情况。许多发达国家已对此开展了不同规模的相关研究及实践工作，世界卫生组织（WHO）更是高度重视相关成果在发展中国家的转化与应用。我国作为全球最大的发展中国家，在该领域的研究起步较晚，仅有少量学者根据具体国情开展了一部分本土化方法学研究与实践工作，总体上尚未引起国内大规模的研究机构或政府组织集中关注。在中医药研究中鲜有提及优先领域者，但针对中医治疗优势病种的研究与决策亦可以视作探索中医优先（治疗）领域的实践工作。虽然决策者们已有“中医药研究优先领域”优先支持的决策意识，但来自顶层设计的决策依据主要是基于高层次智囊团来达成的共识。不仅缺少广泛的调研，也没有囊括多个利益相关方的数据，为此，亟待引入适宜的优先领域设置方法以解决这一决策过程的透明化、科学化难题。基于具体实施路径的角度详细介绍了国际主流的3种综合性优先领域设置方法——詹姆斯·林德联盟优先领域设置合作团体（JLAPSP）方法、儿童健康与营养研究倡议（...