The increasing global burden of long-term illnesses necessitates high-quality data to inform effective interventions, particularly in low-resource settings. Despite the critical role of data collectors in health research, their lived experiences and challenges remain understudied, especially in low- and middle-income countries (LMICs) like Nigeria. This study explored the experiences, barriers and facilitators encountered by field researchers working with individuals living with long-term illnesses.

A qualitative, descriptive phenomenological design was employed, involving in-depth interviews with 12 research coordinators across 12 healthcare facilities in Nigeria. Participants were purposively selected from the Nigeria Implementation Science Alliance–Model Innovation and Research Centres. Data were analysed using Colaizzi’s phenomenological method, with thematic analysis to identify key patterns.

Field researchers described both rewarding experiences and significant obstacles. While they found value in contributing to impactful research, they faced emotional strain from engaging with sensitive narratives. Key barriers included low health literacy, cultural and religious constraints, hesitation to engage in the study and logistical constraints such as unreliable infrastructure. Facilitators included prefield training, trust-building and support systems. Recommendations emphasised ethical adherence, continuous skill development, context-appropriate incentives and streamlined data collection tools.

The study underscores the need for systemic support for data collectors, including mental health resources, adaptive methodologies and institutional policies that address logistical and emotional issues. These findings advocate for participant-centred, ethically sound research practices to enhance data quality and collector well-being in long-term illness studies.

Future research needs to evaluate interventions to optimise data collection processes in LMICs.

Patient safety is crucial in healthcare, especially in home-based settings where unregulated environments and limited supervision pose unique challenges. With the expansion of home healthcare due to an ageing population and healthcare workforce shortages, there is a pressing need for tools to assess patient safety culture in this context. Current instruments, developed for hospitals, do not adequately address the specific dynamics of home healthcare, such as patient autonomy and caregiver involvement. This protocol outlines the development and validation of the Patient Safety Culture in Home Health Care Centers Instrument (PSCHCI), using a sequential exploratory mixed-methods approach.

This sequential exploratory mixed-methods protocol consists of three phases. Phase 1 fieldwork (semi-structured interviews with 15 participants, 3 participant observations and field notes) has been completed. Qualitative data are currently being analysed using conventional content analysis. The scoping review component of Phase 1 is planned but has not yet been conducted. Phase 2 (instrument development) is planned to include item generation from qualitative results followed by expert panel review. Phase 3 (psychometric evaluation), scheduled for late 2026, will employ a cross-sectional study to assess face, content and construct validity; reliability; interpretability; and feasibility. This phase features pilot testing (n=30–50), face and content validity assessment (n=10 each), test-retest reliability (n=15) and exploratory and confirmatory factor analyses (n=300–400).

Ethical approval was obtained from the Ethics Committee of Iran University of Medical Sciences. All participants will provide written informed consent. Confidentiality, voluntary participation and withdrawal rights are guaranteed. Findings will be published in peer-reviewed journals, presented at conferences and shared with participating home healthcare centres, policymakers and stakeholders.

The interaction between the gut microbiota and the host immune system is implicated in the pathogenesis of inflammatory bowel disease, including ulcerative colitis (UC). Targeting the gut microbiota with faecal microbiota transplantation (FMT) from a healthy donor has shown promise in inducing remission in patients with active UC. However, mixed results and protocol heterogeneity have limited its practical application. Our previous Transfer of Faeces in Ulcerative Colitis; Restoring Homeostasis (TURN) trial found a correlation of clinical response with specific strains and butyrate production. Since most gut microbes, including many butyrate producers, are anaerobes, anoxic processing of donor stool may be essential to increase efficacy of FMT in UC. This trial aims to enhance FMT efficacy by applying strict anoxic processing, selecting donors based on microbial composition and using repetitive dual-route administration.

This randomised, double-blind, placebo-controlled, multicentre study evaluates the efficacy of strictly anoxic prepared donor FMT compared with anoxic prepared autologous FMT in patients with mild to moderate active UC. An open-label extension option is available for non-responders in the autologous arm. Included patients will receive 4 weekly FMTs, comprising two double-route administrations (nasoduodenal administration combined with enema) and two single enemas. Donors are selected based on their microbiota profile, informed by our previous TURN trial and literature. A total of 76 patients evaluable for the primary endpoint will be included. The primary endpoint is steroid-free clinical and endoscopic remission at week 8, assessed by the adapted Mayo score. An interim analysis will be conducted midway through the study by a Data Safety Monitoring Board to monitor efficacy and safety. Other outcomes of this study include the evaluation of clinical, endoscopic and histological response. In addition to clinical results, this study aims to provide valuable insights into specific microbial strains, metabolites and mechanisms correlated with response, aiding in the development of future microbial therapies.

Ethics approval was obtained from the medical ethics committee of the Amsterdam University Medical Centre in the Netherlands (reference number 2018_057). All participants will provide written informed consent. The results of the trial will be disseminated through publication in a peer-reviewed journal and presentations at (inter)national conferences.

Prospectively registered in May 2018 in the Dutch Trial Register (NTR/LTR) as NL7770. Assigned NL-OMON52507 following the transition of the Dutch Trial Register to the Overview of Medical Research in the Netherlands. Also registered at ClinicalTrials.gov (NCT05998213).

People living with HIV (PLHIV) frequently face psychological challenges, including stigma, stress and social isolation, which can negatively affect adherence to antiretroviral therapy (ART). Even in high-income countries where treatment is accessible, poor adherence can lead to drug resistance, reduced immune function and early morbidity. This systematic review aims to synthesise evidence on the relationship between psychological and mental health factors and ART adherence among PLHIV in high-income settings.

We will include studies published in any language between January 2015 and the date of the last searches. Reports of studies published in languages other than English, and which appear to be eligible for inclusion after the first level of screening, will be translated using Google Translate.

Studies will be included if they continue to meet the inclusion criteria and the quality of the translation is sufficient to extract the relevant data. PLHIV aged ≥15 years receiving ART in high-income countries. The studies to be included must assess psychological or mental health variables and ART adherence. Peer-reviewed journal articles will be the primary source of evidence. Grey literature identified from reference lists of key articles or using Google Advanced search techniques will be included. Searches for published studies will be done in OVID Medline, PsycINFO and Embase. Cochrane CENTRAL will be used to identify clinical trials in ClinicalTrials.gov and the International Clinical Trials Registry Platform.

Two independent reviewers will assess study quality and risk of bias using the Newcastle-Ottawa Scale, National Institutes of Health (NIH) Quality Assessment Tool and Jadad Scale. Discrepancies will be resolved by a third reviewer. Synthesis of quantitative data will be primarily descriptive. Predictors that have been examined in three or more studies will be reported in detail while those assessed in fewer studies will be presented concisely.

This study will be a review of the literature and will not involve primary collection of patients’ data. We will include amendments to the protocol in the final review. The final study will be published in a peer-reviewed journal and presented at conferences. The results of this systematic review will inform clinical practice, guide future research and support policy development that minimise mental health barriers to ART adherence.

CRD420251102248.

Obstructive sleep apnoea syndrome (OSAS) is a prevalent sleep disorder caused by recurrent upper airway collapse during sleep. Continuous positive airway pressure (CPAP) therapy is the most commonly prescribed treatment; however, adherence remains suboptimal, with non-compliance rates reported between 46% and 83%. Exercise-based interventions have demonstrated beneficial effects on respiratory muscle strength, upper airway function and sleep quality. This study aims to develop an interactive, web-based, game exercise platform (ApneaTheraPlay (ATP)) integrating respiratory, aerobic, strengthening and oropharyngeal exercises as an adjunct to CPAP therapy for individuals with OSAS, and to evaluate its effectiveness compared with a structured presleep exercise programme and a control condition.

This study is designed as a single-blinded, three-arm, parallel-group randomised controlled trial. Individuals diagnosed with OSAS who use CPAP will be randomly allocated to the ATP group, the structured presleep exercise group (SPEG) or the control group (CG). Participants in the ATP and SPEG groups will perform exercise sessions three times per week for 12 weeks (36 sessions in total). The ATP group will use a web-based, interactive, game-based exercise system, whereas the SPEG group will follow a conventional video-based exercise programme delivered in a non-interactive format. Participants in the CG will continue their usual activities and record daily physical activity using an activity diary. The primary outcome measures will be the Apnoea–Hypopnoea Index and nocturnal oxygen saturation parameters. Secondary outcomes will include sleep quality, daytime functioning, fatigue, muscle strength and function, CPAP adherence, psychological status and technology usability.

This study was approved by the Istanbul Medipol University Non-Interventional Clinical Research Ethics Committee (E-10840098-202.3.02-6266; 17 September 2025). The study will comply with the guidelines established by the International Committee of Medical Journal Editors (ICMJE) for clinical trial registration and reporting. The results of this trial will be disseminated through publication in peer-reviewed scientific journals and presentation at national and international scientific meetings. No individual participant data will be shared publicly. This study is supported by The Scientific and Technological Research Council of Turkey (TÜBITAK) under project number 225S257.

NCT07214636.

Subjective well-being, a measurement of quality of life, varies systematically across racialised groups. However, the use of inconsistent subjective well-being measures across academic disciplines results in conflicting subjective well-being findings for people racialised as Black or African American in the USA. The aim of this scoping review is to provide a comprehensive overview of how subjective well-being is measured for people racialised as Black or African American in the USA and to examine how subjective well-being reports differ between people racialised as Black and white in the nation.

This scoping review will use the Joanna Briggs Institute methodology and report findings according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. A predefined search strategy was used on 17 April 2024 to search PubMed (includes MEDLINE), APA PsycINFO (ProQuest), Sociological Abstracts (ProQuest), EconLit (EBSCOhost) and Scopus for studies published in English. Articles will be included if they specify Black or African American population, subjective well-being, and include populations within the USA. Data will be extracted and presented quantitatively and qualitatively in tabular and/or figure form to describe the characteristics and conclusions of included studies, grouped by subjective well-being component and measure. Analysis will identify methodological inconsistencies and research gaps.

This study does not require review by our institution’s review board as primary data will not be collected in this study. The findings of this scoping review will be disseminated through peer-reviewed publications, conference presentations, and condensed summaries for key partners in the field.

10.17605/OSF.IO/M9GA8.

The COVID-19 pandemic threatened global HIV Test and Treat Efforts. We assessed whether it affected (1) the number of antiretroviral therapy (ART) initiations and (2) the proportion of timely ART initiations in people living with HIV (PLWH) globally.

Quasi-experimental, regression discontinuity design using routinely collected data from HIV clinics.

360 HIV care clinics across primary and secondary levels of care, participating in the International epidemiology Databases to Evaluate AIDS consortium, in 31 countries in Asia, Africa and the Americas.

177 391 PLWH (≥18 years old) who initiated ART 2 years before and 1 year after the onset of the COVID-19 pandemic in their country.

The primary outcome was the number of ART initiations per week; the secondary outcome was the proportion of timely ART initiations (ie, ART initiated within 7 days of enrolment). We assessed changes in these outcomes in the 52 weeks after compared to the 104 weeks before the pandemic onset, defined using each country’s peak Oxford Stringency Index score between January and June 2020.

Among 177 391 newly enrolled PLWH, 129 743 initiated during the pre-pandemic and 47 648 post-pandemic onset. 72.5% of ART initiations were timely pre-pandemic whereas 82.3% were during the pandemic. Absolute number of ART initiations remained stable during the pandemic period in 25 of 31 countries but decreased significantly in six countries: India (–5.0 p, 95% CI –9.2 to –0.7), Rwanda (–10.0 p, –18.6 to –1.4), Malawi (–33.4 p, –54.1 to –12.3), South Africa (–130.8 p, –188.6 to –73.1), Zimbabwe (–12.9 p, –20.0 to –5.8) and Togo (–19.6 p, –39.1 to –0.1). The proportion of timely initiations was stable in all countries except in Kenya (+4.2 pp, 95% CI +0.3 to +8.1) and in Mozambique (+2.7 pp, +0.5 to +4.9), where it increased significantly.

A deeper understanding of the factors that contributed to sustaining ART initiations, particularly in settings with stringent public health and social measures, is needed. These insights should inform preparedness strategies, resource allocation and policy development to ensure continuity of HIV services during future health emergencies, in line with World Health Organisation recommendations.

To establish consensus definitions for non-visually impairing eye conditions (NVICs) and their methods of assessments to provide standards for use in population-based eye surveys.

A literature review of NVICs in sub-Saharan Africa, a questionnaire of inquiry based on the literature review developed by an expert panel and a modified Delphi exercise with three iterative rounds with eye health experts.

Eye health academia and community eye health in Nigeria.

Nigerian ophthalmologists, including subspecialists experienced in population-based eye health surveys.

Definitions and statements where at least 70% of the respondents agreed or strongly agreed.

Forty-two ophthalmologists practising in Nigeria with experience in conducting population-based eye health surveys were invited to take part in the Delphi exercise. There were three rounds with response rates of 39/42 (92.9%) in round 1, (94.9%) in round 2 and 100% in round 3. Consensus for NVICs to be included in population-based eye surveys, their definitions and methods for assessment was reached by the third round.

We propose case definitions for NVICs to be assessed in population-based eye surveys through a modified Delphi approach with an expert panel of ophthalmologists from across Nigeria. These case definitions will allow for standardisation of NVICs in population-based eye surveys to assess the prevalence and magnitude of the different types of NVICs for planning purposes. Further studies are needed to validate these case definitions and inform their evolution.

Accessible, person-centred, non-pharmacologic modalities are needed to address chronic pain and health-related quality of life (HRQoL) among individuals with sickle cell disease (SCD). Building off prior single-site pilot studies of music therapy (MT) in SCD, the purpose of this study is to (1) examine the data collection processes and intervention implementation overall and across two sites and (2) evaluate the implementation of the MT and health education interventions using quantitative and qualitative data.

This three-arm, two-site, feasibility randomised controlled trial will include 90 individuals ≥14 years who have SCD, chronic pain and access to a mobile device who are not currently engaged in mind-body pain management interventions under the supervision of a healthcare professional. Participants will be randomised to six sessions over 8 weeks of either: (1) in-person MT, (2) hybrid (one in-person, five virtual) MT or (3) hybrid health education. Patient-reported outcome measures of HRQoL and self-efficacy will be assessed at baseline, post-intervention and 6 weeks post-intervention. 24 participants (eight per arm) and 20 stakeholders (eg, haematologists, music therapists, nurses) will be invited to complete semi-structured interviews to further examine intervention acceptability, perceived benefits and implementation. Sessions will be monitored for fidelity, and participants lacking access to home internet or videoconferencing technology will be provided tablets to engage in virtual sessions. Feasibility will be determined by rates of data completion, recruitment, retention, session attendance and home practice.

This study was approved by the University Hospitals Cleveland Medical Center Institutional Review Board (STUDY20231055). The dissemination plan includes presenting findings at national and international scientific conferences and publishing in peer-reviewed journals. All activities will be conducted in collaboration with SCD community stakeholders.

NCT06853158.

Cancer is the leading cause of death and morbidity among children and adolescents worldwide. Functionality-based interventions are relevant among children and adolescents with an oncological diagnosis, whence studies summarising evidence on this topic are needed. This systematic review will summarise evidence on the effect of interventions to improve functionality indicators among paediatric patients diagnosed with cancer.

This protocol will follow Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA)-Protocols reporting guidelines. The systematic review will be conducted according to the Cochrane Handbook and PRISMA 2020. Studies will be searched in MEDLINE (PubMed), Embase, Web of Science, CENTRAL, LILACS and PEDro. Additional searches will include Google Scholar, reference lists of included studies, relevant reviews and trial registries. Studies will be included if they implement a functionality-based intervention. They must evaluate effects among paediatric patients with an oncological diagnosis. Secondary outcomes will include health-related quality of life. There will be no limits to language or year of publication, and articles published in peer-reviewed journals will be accepted. Only randomised controlled trials will be included. Risk of bias will be assessed using the Cochrane Risk of Bias Tool 2. Two independent reviewers will select studies, extract data and assess risk of bias. A narrative synthesis and meta-analysis will be conducted if studies are clinically and methodologically homogeneous. Statistical heterogeneity will be assessed using Higgins’ inconsistency test (I^²). Meta-analysis may estimate combined effects using random-effects and the inverse variance method. The R statistical software will be used. The certainty of evidence will be evaluated for each outcome using the Grading of Recommendations Assessment, Development and Evaluation system.

This study used data from previously published studies, thus waiving submission to an Ethics Committee. Scientific dissemination strategies will include publication in peer-reviewed journals, conference presentations and workshops for the public.

CRD42024462833.

Cystic fibrosis (CF) is a life-shortening genetic disorder traditionally mischaracterised as affecting only populations of European descent. This framing has contributed to under-recognition of CF in African populations, despite emerging evidence of both common and region-specific cystic fibrosis transmembrane conductance regulator mutations across the continent. Diagnostic barriers, structural inequities and lack of surveillance further exacerbate disparities in care and visibility.

This scoping review aims to characterise CF in African populations by synthesising evidence on clinical presentation, diagnostic practices, genotypic diversity, prevalence and structural barriers to care. We will include case reports, cohort studies, registry analyses and other primary data sources involving individuals of African descent with suspected or confirmed CF. Key outcomes include clinical phenotype, age at diagnosis, mutation profile, diagnostic testing access and mortality. Data sources include Ovid Medline, Embase, Ebsco Global Health, CAB Abstracts and Web of Science Core Collection. Multiple-reviewer screening and extraction will be conducted. We will use narrative synthesis, thematic analysis and meta-analysis for prevalence where feasible.

No ethical approval is required as the review uses published data. Results will be shared with clinicians, researchers and CF networks in Africa and globally to inform diagnostic strategies and policy.