328 research outputs found
Focus on underserved patients: Improving the collection of PROMs within the HIV outpatient clinic of the Amsterdam UMC
No full textBackground:The HIV outpatient clinic of Amsterdam University Medical Centers (AUMC)is implementing digital patient-reported outcomes measures (PROMS) in routine care to improve the quality of life (QoL) for people living with HIV (PWH). We were asked to design tools to promote the participation of patient groups from Ghana and Nigeria.Methods:Two sets of methodologies were used: qualitative research methods informed the development of a ‘patient journey’ and design-thinking methodologies informed the tool development. Participant observation and in-depth semi-structured interviews were conducted to gain insights into patient- and system-related characteristics. Design-thinking methodologies facilitated the transformation of qualitative data into insights that drove design concepts. Three ideation methodologies were used to create four concepts, leading to the final concept.Results:Observations of 17 individual consultations (6 female, 11 male) at the HIV outpatient clinic resulted in six recurring themes. These themes were: Personal relationship; Disclosure; Impact of the diagnosis; Health literacy & Health involvement; Communication; No-shows. The observations and additional literature research informed the development of an interview guide. Seven interviews (5 female, 2 male) were conducted with participants from Ghana and Nigeria. The observations and interviews informed the patient journey (PJ). The PJ showed that patients experience stress and anxiety prior to and during their hospital visit but fully trust doctors and nurses. Based on the insights the design challenge was addressed, leading to the following concepts: “Peer support community”; “Wellbeing Diary”; “Waiting Room Inspiration”; “Hospital Roadmap”.Conclusions:Amsterdam UMC will adopt the “Wellbeing Diary” which embodies the following characteristics: independence from relying on other organisations or infrastructure for implementation; a visual design that can be used independent of literacy level; and its affordability. The paper diary will provide a low-threshold tool for people to record PROMs-like experiences that will prepare them for their consultations at the outpatient clinic.Design for Interaction | Medisig
Chronic Liver Enzyme Elevation and Use of Contemporary ARVs Among People With HIV
No full textBackground. While use of some older antiretroviral drugs (ARVs) is associated with chronic liver enzyme elevation (cLEE), the impact of newer ARVs remains unknown. Methods. People with HIV enrolled in the RESPOND cohort who started an ARV after January 1, 2012 were included (baseline). The primary outcome was first cLEE individuals were censored at first of cLEE, last visit, death, or December 31, 2021. Incidence rates (IRs; events/1000 person-years) were calculated for each ARV overall and by ARV exposure (6-12 months, 1-2 years, and 2+ years). Poisson regression was used to estimate the incidence rate ratio (IRR) of cLEE and its association with individual ARVs and ARV class. Results. Of 17 106 individuals included contributing 87 924 person-years of follow-up, 1932 (11.3%) experienced cLEE (incidence rate [IR], 22.0; 95% CI, 21.0-23.0). There was no evidence of a cumulative ARV effect on cLEE incidence, (6-12 months: IR, 45.8; 95% CI, 41.4-50.19; 1-2 years: IR, 34.3; 95% CI, 31.5-37.4; and 2+ years: IR, 18.5; 95% CI, 17.4-19.7). Any use (vs no prior use) of non-nucleoside reverse transcriptase inhibitors (NNRTIs) as a class and tenofovir disoproxil fumarate (TDF) was independently associated with an increased IRR of cLEE, and any use of darunavir (DRV) was associated with a decreased risk of cLEE. Conclusions. cLEE is common and more frequent during the first year after initiating new ARVs. With a >5-year median follow-up, we found no short-term liver safety concerns with the use of INSTIs. Use of NNRTIs and TDF was associated with an increased cLEE risk, while DRV was associated with lower risk
Remaining challenges for hepatitis C virus elimination in the era of direct-acting antiviral agents
No full textHepatitis C (HCV) is an infectious disease caused by a virus primarily affecting the liver. Approximately 70-80% of HCV-infected individuals develop a chronic HCV infection. If left untreated, progressive liver damage results in liver cirrhosis in 20-30% of individuals after 20-30 year. Individuals with cirrhosis are at risk of developing hepatocellular carcinoma, bleeding of gastroesophageal varices, and liver failure.
Globally, an estimated 58 million persons were living with a chronic HCV infection in 2020. The Netherlands has a relatively low HCV prevalence, with an estimated 23.000 persons ever chronically HCV-infected in 2016. Populations with a relatively high HCV prevalence in the Netherlands are migrants from HCV-endemic countries, mainly in Africa, Eastern Europe and Asia, people with a history of injecting drug use, men who have sex with men, and people with inherited bleeding disorders such as haemophilia. Before 2014, antiviral therapy used for HCV had to be given for six to twelve months, had severe side-effects and a relatively limited efficacy. In 2014, a new type of HCV therapy became available, so-called direct-acting antivirals (DAA). After eight to twelve weeks of treatment with DAA >95% of treated individuals is cured, while side-effects are limited.
Due to the introduction of this effective therapy, the World Health Organisation announced the ambition to eliminate HCV as a global public health threat before 2030. The aim of this thesis was to describe remaining challenges for HCV elimination in the era of direct-acting antivirals.
The thesis consists of three parts, divided into several chapters. Part I focuses on challenges for HCV elimination in people with haemophilia. Chapter 2 is a narrative review describing the history and current situation regarding viral hepatitis in people with haemophilia. In Chapter 3, liver-related complications of long-term HCV infection in people with inherited bleeding disorders are reported, mainly focusing on the setting following successful antiviral treatment. In Chapter 4, the health-related quality of life of people with haemophilia after successful HCV treatment is described and compared with the quality of life of people with haemophilia who were never chronically HCV-infected.
Part II describes challenges for HCV elimination in people living with HIV. In Chapter 5, the prevalence of HCV-viremia in people living with HIV in the Netherlands between 2000 and 2019 is described, followed by an analysis of barriers to DAA-uptake during unrestricted access. Chapter 6 is an international cohort study in which DAA-uptake during unrestricted access was compared between several countries and factors associated with remaining DAA-untreated over time were analysed. In the European, cross-sectional study reported in Chapter 7, data from several cohorts were combined to assess DAA efficacy among individuals with HIV/HCV originating from Sub-Saharan Africa or Southeastern Asia.
Part III concerns challenges for HCV elimination in the Netherlands in general. Chapter 8 is a nationwide retrieval project aiming to re-engage previously diagnosed but lost to follow-up individuals with care. Chapter 9 is a nationwide study aiming to evaluate DAA efficacy and prevalence of resistance-associated substitutions in patients treated for a non-epidemic HCV genotype in the Netherlands. In Chapter 10, literature regarding liver-related complications following DAA-based HCV eradication in patients with cirrhosis is reviewed and summarised, to determine whether we should continue surveillance for hepatocellular carcinoma and gastroesophageal varices in these patients. Chapter 11 is a modelling study in which the progress towards HCV elimination in the Netherlands is estimated according to several scenarios.
Finally, the general discussion (Chapter 12) discusses the current HCV epidemiology in the Netherlands, remaining challenges for HCV elimination in several key populations as well as the Netherlands in general, and policy changes required to advance HCV elimination in the Netherlands
Clinical studies on hepatitis B, C, and E virus infection
No full textChronic viral hepatitis is a major cause of liver-related morbidity and mortality. This thesis describes clinical aspects of hepatitis B, C, and E virus infection. Part I focuses on hepatitis B virus (HBV) infection. This part describes immune responses of patients with acute HBV-infection, interferon-y-inducible-protein-10 (IP-10) as a marker for immune activation and response to interferon-based treatment in patients with chronic HBV infection, and treatment for patients with chronic HBV infection with low viral load with a combination of peginterferon and a nucleo(s)tide analogue. Part II focuses on hepatitis C virus (HCV) infection, particularly on treatment-related topics, such as IP-10 as a response marker for interferon-based therapy, treatment of patients with chronic HCV infection with direct acting antiviral agents (DAAs), and an attempt to predict the effect of different treatment approaches (in which various hepatitis C patient groups are treated) on the size of the future HCV-viremic population and HCV-related disease burden. Part III is focused on hepatitis E virus (HEV) infection. This part describes the prevalence of chronic HEV infection among allogeneic hematopoietic stem cell transplantation recipients, and its possible relation with graft versus host disease
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