ABSTRACT
Introduction: The extended half-life (EHL) registry was established in 2016 to ascertain the long-term outcomes in patients with HaemophiliaA(HA) and B(HB) receiving replacement therapy. The aim was to quantify disease burden and quality of life at baseline and after switching to EHLs. Method(s): The study is a prospective, observational cohort study that enrolled patients switching EHLs or on standard replacement therapy after informed consent following local ethics approval and was registered at www.clinicaltrials.gov (NCT02938156). The study was paused during the COVID pandemic. Here the baseline results are presented for pain, activity and quality of life and their correlations. Pain evaluation was assessed through the brief pain inventory (BPI) 7-day recall, quality of life by EuroQol-5 Dimension (EQ5D5L) and physical activity through the international physical activity questionnaire (IPAQ). The BPI assess severity of pain and the interference with activities. IPAQ assess physical activity undertaken across a comprehensive set of domains. Three levels of physical activity are used to classify the populations: 'low', 'moderate', and ' high'. Result(s): A total of 231 HA and 97 HB were included in the analysis, of whom 231 had switched to EHL products and 96 were on standard replacement therapy. The levels of Physical Activity were similar between Haemophilia types, with approximately 46%, 32% and 22% of patients reporting high, moderate, and low physical activity, respectively. BPI mean (+/-SD) severity score in HA was 2.86 (+/-2.1), HB 3.24 (+/-2.0);interference score HA 3.22 (+/-2.8), HB 3.09 (+/-2.5), mean EQ5D5L visual analogue scale (VAS) for HA 72.92 (+/-15.5) and HB 71.10 (+/-18.2). Within instruments, IPAQ sub-scores and BPI average scores were highly correlated. Between instruments, the strongest linear correlations were seen between theVAS and the BPI scores (R=-0.59, p< 0.0001, n=206 for the average interference score, R=-0.57, p< 0.0001, n=208 for the average pain severity, v.s. the VAS). Correlations between the IPAQ total score and either VAS or BPI scores were weaker, even when limiting to patients with moderate or high activity and using a log scale given the skewed distribution of the IPAQ summary measure. Discussion/Conclusion: The study demonstrates for the first time a strong correlation between pain and quality of life, and weaker correlation between physical activity and quality of life.
ABSTRACT
Inland fisheries in the Kavango–Zambezi Transfrontier Conservation Area (KAZA-TFCA) offer food security to the riverine communities across the region. They also contribute towards the attainment of the United Nations' Sustainable Development Goals 1 and 15, which aim to alleviate poverty and maintain biodiversity conservation. Despite this significant role, the fisheries have suffered severe declines in the previous decades due to multiple factors, such as overfishing and poor legislation. Furthermore, climate change is exerting pressure by altering the ecology and productivity of the river systems. The unprecedented challenges of the COVID-19 pandemic have further constrained management efforts. Attempts to address these challenges have pointed towards transboundary fisheries management as a silver bullet in moving towards sustainable fisheries management. However, the implementation of this strategy in the region has encountered numerous roadblocks, thereby subjecting the river ecosystem to a wider environmental threat, with dire consequences on livelihoods. This paper reviews existing management and governance structures together with key informant interviews to elicit primary and secondary data essential for management at the regional level. The study identifies conflicting regulations, and inadequate policies and institutions across the region as major bottlenecks affecting the successful implementation of transboundary fisheries management. Finally, the paper offers some suggestions for the improvement of fisheries management in the region. © 2023 by the authors.