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Characterising cystic fibrosis in African populations: a scoping review protocol on phenotype, diagnosis, genetics and barriers to care

Por: Ratner · L. · Marangu-Boore · D. · Hamouda · S. · Kwarteng Owusu · S. · Eze · J. · Dakshi · A. · Wordui · S. · Hamdy · A. · Owusu · S. A. · Weldetsadik · Y. · Uluer · A. · Daimi · H. · El Makhzen · N. · Abriel · H. · Nasr · S. · Moosa · S. · Swanson · C. · Cronin · A. E. · Zampoli · M.
Introduction

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.

Methods and analysis

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.

Ethics and dissemination

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.

Comparison of patients’ acceptance of cuff-based vs wearable 24-hour ambulatory blood pressure monitoring devices: A multi-method study

by Ariffin Kawaja, Aminath Shiwaza Moosa, Eric Kam Pui Lee, Ian Kwong Yun Phoon, Andrew Teck Wee Ang, Zi Ying Chang, Aileen Chelsea Ai’En Lim, Jonathan Yap, Weiting Huang, Ding Xuan Ng, Melvin Yuansheng Sng, Hao Yuan Loh, Chirk Jenn Ng

Introduction

Recent hypertension guidelines recommend ambulatory blood pressure monitoring (ABPM) for accurate diagnosis and monitoring. However, patients’ experiences with cuff and wearable ABPM devices in primary care remain unclear. This study compared the acceptance of three devices (oscillometry cuff, tonometry wrist, and photoplethysmography chest devices) among patients with hypertension in primary care.

Methods

A multi-method study was conducted. Thirty-five participants with hypertension were recruited from two public primary care clinics in Singapore. All participants used cuff-based and either wrist or chest wearable devices for 24 hours. Structured surveys and in-depth audio-recorded interviews were used to gather feedback on their views, experiences, and challenges using the devices. The interviews were thematically analysed, and the surveys were analysed using descriptive statistics.

Results

All participants used the cuff (n = 35) device, while the wrist and chest devices were used by two-thirds (n = 22) and a third (n = 11) of the participants, respectively.The device usability questionnaire found that most participants were satisfied with the chest device, which did not disrupt their daily activities. Conversely, cuff arm devices interfered with daily activities (48%) and sleep (26%), were cumbersome (32%), and caused embarrassment (26%). The wrist device was uncomfortable (33%) and painful (22%) for some participants.The qualitative data were categorised into five themes: comfort, convenience, perceived accuracy, and impact on routine and sleep. Participants found the chest device more comfortable and convenient than the cuff and wrist devices. The cuff device was perceived as the most accurate due to its inflation-based BP measurement. All devices minimally affected routines and sleep, though participants expressed safety concerns about the cuff device, particularly while driving.

Conclusion

While wearable ABPM devices offer increased comfort, convenience and reduced impact on patient’s daily activities, concerns regarding their accuracy must be addressed before the widespread adoption of these devices in routine clinical practice.

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