Introduction: Throughout life, a patient with severe haemophilia is confronted with many treatment-related challenges. Insight into self-management and non-adherence could improve the quality of care for these patients. The aim of this study was to provide an overview of the current evidence on self-management and adherence to prophylaxis in haemophilia. Method: Based on series of studies and published literature, aspects of treatment were explored: learning and performing self-infusion, achieving self-management skills in adolescence, adherence issues and coping with haemophilia. Evidence-based and age-group-specific recommendations for haemophilia professionals were formulated. Results: Nearly, all severe haemophilia patients and parents were able to perform self-infusion and the quality level of infusion skills was acceptable. Learning self-infusion was generally initiated before the onset of puberty and full self-management was obtained 10 years later. Adherence was defined using a Delphi consensus procedure and was determined by skipping, dosing and timing of infusions. Adherence levels varied according to age, with highest levels in children (1–12 years) and the lowest among 25–40 years. Adherence to prophylaxis was acceptable (43%), yet 57% of the population struggled with prophylaxis. Qualitative research showed that the position of prophylaxis in life is the main driver of adherence. This position is influenced by acceptance and self-management skills. Regarding coping with haemophilia, the majority of patients used a problem-focused approach. Conclusion: Self-management and adherence to prophylaxis vary during the life span. Acceptance of the disease and self-management skills were important aspects that may require tailored professional support.
BackgroundOcclusions of intravenous (IV) tubing can prevent vital and time-critical medication or solutions from being delivered into the bloodstream of patients receiving IV therapy. At low flow rates (≤ 1 ml/h) the alarm delay (time to an alert to the user) can be up to 2 h using conventional pressure threshold algorithms. In order to reduce alarm delays we developed and evaluated the performance of two new real-time occlusion detection algorithms and one co-occlusion detector that determines the correlation in trends in pressure changes for multiple pumps.MethodsBench-tested experimental runs were recorded in triplicate at rates of 1, 2, 4, 8, 16, and 32 ml/h. Each run consisted of 10 min of non-occluded infusion followed by a period of occluded infusion of 10 min or until a conventional occlusion alarm at 400 mmHg occurred. The first algorithm based on binary logistic regression attempts to detect occlusions based on the pump’s administration rate Q(t) and pressure sensor readings P(t). The second algorithm continuously monitored whether the actual variation in the pressure exceeded a threshold of 2 standard deviations (SD) above the baseline pressure. When a pump detected an occlusion using the SD algorithm, a third algorithm correlated the pressures of multiple pumps to detect the presence of a shared occlusion. The algorithms were evaluated using 6 bench-tested baseline single-pump occlusion scenarios, 9 single-pump validation scenarios and 7 multi-pump co-occlusion scenarios (i.e. with flow rates of 1 + 1, 1 + 2, 1 + 4, 1 + 8, 1 + 16, and 1 + 32 ml/h respectively). Alarm delay was the primary performance measure.ResultsIn the baseline single-pump occlusion scenarios, the overall mean ± SD alarm delay of the regression and SD algorithms were 1.8 ± 0.8 min and 0.4 ± 0.2 min, respectively. Compared to the delay of the conventional alarm this corresponds to a mean time reduction of 76% (P = 0.003) and 95% (P = 0.001), respectively. In the validation scenarios the overall mean ± SD alarm delay of the regression and SD algorithms were respectively 1.8 ± 1.6 min and 0.3 ± 0.2 min, corresponding to a mean time reduction of 77% and 95%. In the multi-pump scenarios a correlation > 0.8 between multiple pump pressures after initial occlusion detection by the SD algorithm had a mean ± SD alarm delay of 0.4 ± 0.2 min. In 2 out of the 9 validation scenarios an occlusion was not detected by the regression algorithm before a conventional occlusion alarm occurred. Otherwise no occlusions were missed.ConclusionsIn single pumps, both the regression and SD algorithm considerably reduced alarm delay compared to conventional pressure limit-based detection. The SD algorithm appeared to be more robust than the regression algorithm. For multiple pumps the correlation algorithm reliably detected co-occlusions. The latter may be used to localize the segment of tubing in which the occlusion occurs.
LINK
Background: Intravenous (IV) therapy using short peripheral IV catheters (PIVC) is commonplace with neonatal patients. However, this therapy is associated with high complication rates including the leakage of infused fluids from the vasculature into the surrounding tissues; a condition referred to as, peripheral IV infiltration/extravasation (PIVIE). Objective: The quality improvement project aimed to identify the prevalence of known risk factors for PIVIE in the neonatal intensive care unit (NICU) and explore the feasibility of using novel optical sensor technology to aid in earlier detection of PIVIE events. Methods: The plan, do, study, act (PDSA) model of quality improvement (QI) was used to provide a systematic framework to identify PIVIE risks and evaluate the potential utility of continuous PIVC monitoring using the ivWatch model 400® system. The site was provided with eight monitoring systems and consumables. Hospital staff were supported with theoretical education and bedside training about the system operations and best use practices. Results: In total 113 PIVIE's (graded II-IV) were recorded from 3476 PIVCs, representing an incidence of 3.25%. Lower birth weight and gestational age were statistically significant factors for increased risk of PIVIE (p = 0.004); all other known risk factors did not reach statistical significance. Piloting the ivWatch with 21 PIVCs using high-risk vesicant solutions over a total of 523.9 h (21.83 days) detected 11 PIVIEs (graded I-II). System sensitivity reached 100%; 11 out of 11 PIVIEs were detected by the ivWatch before clinician confirmation. Conclusions: Prevailing risk factors for PIVIE in the unit were comparable to those published. Continuous infusion site monitoring using the ivWatch suggests this technology offers the potential to detect PIVIE events earlier than relying on intermittent observation alone (i.e. the current standard of care). However, large-scale study with neonatal populations is required to ensure the technology is optimally configured to meet their needs.
LINK
