Patients with chronic obstructive pulmonary disease (COPD) may benefit from palliative care including advance care planning, because of their severe symptom burden and high mortality rates. However... Show morePatients with chronic obstructive pulmonary disease (COPD) may benefit from palliative care including advance care planning, because of their severe symptom burden and high mortality rates. However, this care is poorly implemented due to various reasons. Therefore, this thesis aimed to study the effectiveness of palliative care for patients with COPD and how a palliative care approach can be successfully integrated into regular COPD care.A national survey among pulmonologists and general practitioners was conducted to identify the current content and organization of palliative care in COPD in the Netherlands (Chapter 2). A systematic review revealed that very little was known about the effectiveness of palliative care interventions in COPD and how best to implement it in practice (Chapter 3). To close this knowledge gap, the COMPASSION study was designed (Chapter 4). In a cluster randomized controlled trial in eight hospital regions, health care providers of intervention regions were trained to identify palliative patients with COPD using the ProPal-COPD tool, do advance care planning conversations, and manage dyspnea. The effectiveness on patient outcomes was studied (Chapter 5) and factors for successful implementation identified (Chapter 6). Finally, the ProPal-COPD tool was externally validated and user experiences examined (Chapter 7). Show less
Many Chinese people suffer from chronic diseases like hypertension and chronic lung disease (CLD), leading to a significant disease burden. Self-management intervention (SMI) can help improve... Show moreMany Chinese people suffer from chronic diseases like hypertension and chronic lung disease (CLD), leading to a significant disease burden. Self-management intervention (SMI) can help improve patients’ quality of life and reduce the disease burden. But most research on SMI has been done in high-income countries, while over 599 million Chinese people suffer from chronic diseases. Implementing effective SMI in high–income countries for Chinese people with chronic diseases is possible. However, such SMI might not work well in China because of differences in economics and culture. To meet this end, this thesis aimed to tailor a proven-effective SMI tackling CLD, developed and tested in the Netherlands, to the Chinese context. The tailoring steps included identifying the Chinese context, selecting the SMI and mode of delivery, identifying factors influencing the SMI implementation, and integrating SMI into the Chinese context. The results found that SMI – developed and tested in the Netherlands – could be tailored in China. The tailored SMI could help Chinese people with CLD improve their health outcomes and reduce the disease burden, consequently can optimize resource use locally. Other researchers could use the research experience in this thesis to tailor other SMIs targeting other chronic diseases in other cultures. Show less
Background: In management decisions on saccular unruptured intracranial aneurysms (UIAs) the risk of rupture is an important factor. The PHASES score, introduced in 2014, provides absolute 5-year... Show moreBackground: In management decisions on saccular unruptured intracranial aneurysms (UIAs) the risk of rupture is an important factor. The PHASES score, introduced in 2014, provides absolute 5-year risks of rupture based on six easily retrievable patient and aneurysm characteristics. We assessed whether management decisions on UIAs changed after implementation of the PHASES score. Patient and methods: We included all patients with UIAs who were referred to two Dutch tertiary referral centers for aneurysm care in the Netherlands (University Medical Center Utrecht (UMCU) and Leiden University Medical Center (LUMC)) between 2011 and 2017. Analyses were done on an aneurysm level. We calculated the overall proportion of UIAs with a decision to treat before and after PHASES implementation and studied the influence of age and center on post-implementation management changes. Results: We included 623 patients with 803 UIAs. The proportion of UIAs with a decision to treat was 123/360 (34.2%) before and 117/443 (26.4%) after PHASES implementation (absolute risk difference:-7.8%; 95% CI: -14.1 to-1.4). The decision to treat was made at a higher median PHASES score after implementation (7 points (IQR 5;10) pre-versus 8 points (IQR 5;10) post-implementation; p = 0.14). The reduced proportion with a treatment decision after implementation was most pronounced in patients <50 years (-22.3%; 95% CI:-39.2 to -3.4) and was restricted to treatment decisions made at the UMCU (-10.6%; 95% CI:-18.5 to-2.5). Discussion and conclusions: Management of UIAs changed following implementation of the PHASES score, but the impact of PHASES implementation on treatment decisions differed across age subgroups and centers. Show less
Schistosoma antigen detection tests have a large potential for schistosomiasis control programs due to their ability to detect active and ongoing Schistosoma infections, their much higher... Show moreSchistosoma antigen detection tests have a large potential for schistosomiasis control programs due to their ability to detect active and ongoing Schistosoma infections, their much higher sensitivity compared to micro-scopical methods, and the possibility to use non-invasive urine samples. Pregnant women and young children could especially benefit from affordable and easy-to-use antigen tests as inclusion of these vulnerable groups in mass drug administration campaigns will always require higher justification hurdles, especially in low to middle endemic regions with a higher proportion of individuals who are not infected and thus unnecessarily exposed to praziquantel.The overall objective of the 'fast and reliable easy-to-use diagnostics for eliminating bilharzia in young children and mothers' (freeBILy, www.freeBILy.eu) project is to thoroughly evaluate the point-of-care circulating cathodic antigen (POC-CCA) and the up-converting phosphor reporter particle, lateral flow circulating anodic antigen (UCP-LF CAA) urine strip tests to diagnose Schistosoma infections in pregnant women and young children and to assess their potential as a schistosomiasis control tool in test-and-treat strategies. The freeBILy project will generate valuable, evidence-based findings on improved tools and test-and-treat strategies to reduce the burden of schistosomiasis in pregnant women and young children. Show less
