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Evaluating patient outcomes and stakeholder perspectives in a novel healthcare transition clinic for young people living with HIV: a mixed methods study.

Patients transitioning from pediatric to adult HIV care have lower rates of retention in care and viral suppression. Health system interventions can improve outcomes in adolescents and young adults living with HIV (AYA-HIV). We designed and implemented an Adolescent Young Adult Healthcare Transition (AYAHCT) clinic in a U.S.-based healthcare system. We present a mixed-method (quantitative and qualitative) evaluation. The quantitative analysis included retrospective clinical outcomes between 2017-2023. Qualitative analysis included stakeholder interviews in pediatric, AYAHCT, and adult HIV clin

Brain injury, mental health and substance use in homeless populations: community-generated recommendations for healthcare service delivery and research.

BACKGROUND: The prevalence of acquired brain injury (ABI) and mental health/substance use (MHSU) disorders is high amongst people experiencing homelessness, yet guidance for addressing these complex comorbidities is lacking. Therefore, the objective of this study was to engage community-based stakeholders in a health priority-setting process to generate, identify and prioritize recommendations for clinical practice and research to improve healthcare services for individuals with concurrent ABI-MHSU who are experiencing homelessness. METHODS: Data were collected during a one-day workshop as pa

"All of these things interact, that's why it's such a wicked problem": Stakeholders' perspectives of what hinders low back pain care in Australia and how to improve it.

BACKGROUND: Low-quality care for low back pain (LBP) is pervasive in Australia. Drivers of low-quality care have been identified elsewhere and include misconceptions about LBP, vested interests and limited funding for evidence-based interventions. Yet, the literature that identified such drivers is not specific to the Australian context, and therefore, it is likely to represent only part of the local problem. This study aimed to determine where the most influential drivers of LBP care are in the Australian healthcare system and what could be done to address them. METHODS: Clinical leaders fro

A core outcome set development for a French national prospective study about the effect of mediolateral episiotomy on obstetric anal sphincter injury during operative vaginal delivery (INSTRUMODA).

BACKGROUND: We aimed at developing a core outcome and variables of interest set to investigate the effects of mediolateral episiotomy on Obstetric Anal Sphincter Injury (OASI) during and after operative delivery in nulliparous women in a large-scale one-year observational French study including 15,000 women (INSTRUMODA). METHODS: A list of outcomes and variables of interest was suggested to obstetricians participating in the INSTRUMODA study using online questionnaires divided into 7 categories: the woman's history and course of pregnancy, course of labor, modalities of operative delivery, ep

Development of a core outcome set for pediatric critical care outcomes research.

BACKGROUND: Pediatric Intensive Care Unit (PICU) teams provide care for critically ill children with diverse and often complex medical and surgical conditions. Researchers often lack guidance on an approach to select the best outcomes when evaluating this critically ill population. Studies would be enhanced by incorporating multi-stakeholder preferences to better evaluate clinical care. This manuscript outlines the methodology currently being used to develop a PICU Core Outcome Set (COS). This PICU COS utilizes mixed methods, an inclusive stakeholder approach, and a modified Delphi consensus p

Establishing a Core Outcome Set for Autosomal Dominant Polycystic Kidney Disease: Report of the Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) Consensus Workshop.

The omission of outcomes that are of relevance to patients, clinicians, and regulators across trials in autosomal dominant polycystic kidney disease (ADPKD) limits shared decision making. The Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) Initiative convened an international consensus workshop on October 25, 2018, to discuss the identification and implementation of a potential core outcome set for all ADPKD trials. This article summarizes the discussion from the workshops and the SONG-PKD core outcome set. Key stakeholders including 11 patients/caregivers and 47 healt

EULAR definition of difficult-to-treat rheumatoid arthritis.

BACKGROUND: Despite treatment according to the current management recommendations, a significant proportion of patients with rheumatoid arthritis (RA) remain symptomatic. These patients can be considered to have 'difficult-to-treat RA'. However, uniform terminology and an appropriate definition are lacking. OBJECTIVE: The Task Force in charge of the "Development of EULAR recommendations for the comprehensive management of difficult-to-treat rheumatoid arthritis" aims to create recommendations for this underserved patient group. Herein, we present the definition of difficult-to-treat RA, as th

Newborn screening for SMA in Southern Belgium.

Approval was recently granted for a new treatment for spinal muscular atrophy (SMA). Given that the treatment is effective when administered early and the societal burden of SMA-related disability, the implementation of a newborn screening program is warranted. We describe the stepwise process that led us to launch a newborn screening program for SMA in Southern Belgium. Different political, ethical, and clinical partners were informed about this project and were involved in its governance, as were genetic and screening labs. We developed and validated a newborn screening method to specificall

Study protocol: developing, disseminating, and implementing a core outcome set for selective fetal growth restriction in monochorionic twin pregnancies.

BACKGROUND: Selective fetal growth restriction in monochorionic twin pregnancies is associated with an increased risk of perinatal mortality and morbidity and represents a clinical dilemma. Interventions include expectant management with early preterm delivery if there are signs of fetal compromise, selective termination of the compromised twin, fetoscopic laser coagulation of the communicating placental vessels or termination of the whole pregnancy. Previous studies evaluating interventions have reported many different outcomes and outcome measures. Such variation makes comparing, contrasting

Voluntary medical male circumcision for HIV prevention among adolescents in Kenya: Unintended consequences of pursuing service-delivery targets.

INTRODUCTION: Voluntary medical male circumcision (VMMC) provides significant reductions in the risk of female-to-male HIV transmission. Since 2007, VMMC has been a key component of the United States President's Emergency Plan for AIDS Relief's (PEPFAR) strategy to mitigate the HIV epidemic in countries with high HIV prevalence and low circumcision rates. To ensure intended effects, PEPFAR sets ambitious annual circumcision targets and provides funding to implementation partners to deliver local VMMC services. In Kenya to date, 1.9 million males have been circumcised; in 2017, 60% of circumcis

Empowering Patients in Clinical Research: A Narrative Review.

This narrative review focuses on the evolving shift toward patient centricity in Indian clinical research, highlighting persistent gaps in structured patient engagement. The review synthesizes existing literature on patient-centered clinical research and contextualizes these principles through two India-based initiatives: Patient Advocates for Clinical Research (PACER) and Patient Recommendations for Ethical Decentralized and Inclusive Clinical Trials (PREDICT). A targeted literature search was conducted across Medline (via PubMed), Google Scholar, and the Cochrane Library to identify publishe

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… Together, they have the potential to support patient-centric research, informed advocacy, and active stakeholder participation, ultimately contributing to improved clinical trial engagement and ethical compliance [ 21 , 51 , 52 ]. …

Youth patient and public involvement in health research in the Netherlands: experiences from a multi-stakeholder interview study.

BACKGROUND: While patient and public involvement in health research is becoming gradually more common, there is still only limited involvement from children and adolescents. Especially in funded (health) research, youth has been found to be a hard to reach and vulnerable group. Previous literature argues that a responsive approach is needed. To obtain more insights into how such an approach can be perpetuated in funded health research projects, this study evaluated the experiences with youth involvement in health research from a multi-stakeholder perspective. METHODS: Youth involvement was ev

Development of a Self-Management App for People with Spinal Cord Injury.

With decreasing inpatient rehabilitation lengths of stay, there may be a greater risk of spinal cord injury (SCI) populations being discharged into the community without the self-management skills needed to prevent secondary complications. Recent advancements in mobile health has made mobile apps a feasible method of delivering population-based, self-management interventions to address SCI-specific secondary complications. The objective of this study is to describe stakeholder perspectives on the development of a functional mobile app to facilitate self-management skills needed to prevent seco

Stakeholder perspectives on hearing conservation programmes in the South African mining sector: A qualitative study.

PURPOSE: Stakeholders play a crucial role in the success of complex interventions, such as hearing conservation programmes (HCPs), where their active participation directly impacts outcomes. This study aimed to investigate the views of various stakeholders, involved in occupational noise management, in the mining sector in South Africa. METHODS: A cross-sectional qualitative study was conducted, recruiting 16 participants through purposive and snowball sampling techniques. Participants represented diverse roles, including Mine Health and Safety officials, audiologists, ventilation and occupat

Analysis of the Factors Influencing Enterprise and Government Participation in the Medicines Patent Pool Based on System Dynamics Model.

BackgroundThe participation of enterprises and governments in the Medicines Patent Pool (MPP) improves the disease management levels by enhancing the accessibility of medical resources. Non-participation of the stakeholders restricts the development of the MPP. Hence, systematic analysis of the key factors influencing MPP participation is necessary.MethodsA system dynamics model of the market before and after enterprises and governments join the MPP was constructed by considering the economic benefits of both stakeholders. The effects of generic drug prices, royalty rates, pooling subsidies, a

Considerations for the design of overdose education and naloxone distribution interventions: results of a multi-stakeholder workshop.

INTRODUCTION: Opioid overdose epidemic is a public health crisis that is impacting communities around the world. Overdose education and naloxone distribution programs equip and train lay people to respond in the event of an overdose. We aimed to understand factors to consider for the design of naloxone distribution programs in point-of-care settings from the point of view of community stakeholders. METHODS: We hosted a multi-stakeholder co-design workshop to elicit suggestions for a naloxone distribution program. We recruited people with lived experience of opioid overdose, community represen

From research on to research with: a bottom-up participatory approach for setting research agenda at a rural health research unit.

Public health research often relies on top-down approaches that do not adequately address local needs or engage end-users as active participants. This article narrates the implementation of a bottom-up health research approach at the Model Rural Health Research Unit (MRHRU) in Puducherry, India, aimed at prioritising community participation in health research. The model leverages a participatory approach to integrate local stakeholders into the research process. The study outlines a structured, democratic process for stakeholder engagement, beginning with the identification and network-buildin

Exploring awareness and prevalence of chronic viral hepatitis in a UK based Nepali population - lessons learned for future models in engaging migrant communities.

INTRODUCTION: The burden of chronic viral hepatitis (CVH) in the UK Nepali population is unknown. We aimed to determine knowledge of liver disease (LD) and prevalence of CVH in this community. METHODS: This was a mixed method (qualitative and quantitative) study guided by a multidisciplinary stakeholder group. Focus groups (FG) led by Nepali community leaders explored LD knowledge. Thereafter, a prospective community-based cohort study utilising dried-blood spot testing was conducted. Thematic analysis explored FG data with categorical data analysed with Excel and R Studio. RESULTS: FG data

[Fifteen years' experience in scorpion envenomation control in Algeria].

In Algeria, scorpion envenomation is real public health problem. Since the creation of the National Committee of Control of Scorpion envenomations (CNLES), several steps have been taken to deal with this problem. After a brief historical introduction, we present the main elements of the action carried out both in terms of treatment and of prevention of scorpion proliferation. The epidemiological situation is presented by stressing the difficulties involved in collecting reliable data. We also address the question of citizen and stakeholder awareness since public participation is crucial in all

Stakeholders identify similar barriers but different strategies to facilitate return-to-work: A vignette of a worker with an upper extremity condition.

BACKGROUND: Stakeholders involved in the return-to-work (RTW) process have different roles and qualificationsOBJECTIVE:To explore the perspectives of Australian stakeholders of the RTW barriers and strategies for a worker with an upper extremity condition and a complex workers' compensation case. METHODS: Using a case vignette, stakeholders were asked to identify barriers and recommend strategies to facilitate RTW. Content analysis was performed on the open-ended responses. The responses were categorised into RTW barriers and strategies using the biopsychosocial model. Pearson's Chi Square an