The struggle behind I'm all right : Response shifts and self-presentation in small-cell lung cancer patients

Wal, G. van der [Promotor]Hak, A. [Copromotor]The, B.A.M. [Copromotor

'We eat together; today she buys, tomorrow I will buy the food': adolescent best friends' food choices and dietary practices in Soweto, South Africa

Objective To explore if and how female adolescents engage in shared eating and joint food choices with best friends within the context of living in urban Soweto, South Africa. Design A qualitative, exploratory, multiple case study was conducted using semi-structured duo interviews of best friend pairs to ascertain their eating patterns, friendship and social interactions around dietary habits. Setting Participants were recruited from three high schools in the urban township of Soweto, South Africa. Subjects Fifty-eight female adolescents (twenty-nine friend pairs) still in high school (mean age of 18 years) were enrolled. Results Although overweight rates were high, no association between friends was found; neither did friends share dieting behaviours. Both at school and during visits to the shopping mall, foods were commonly shared and money pooled together by friends to make joint purchases. Some friends carefully planned expenditures together. Foods often bought at school were mostly unhealthy. Availability, price and quality were reported to affect choice of foods purchased at school. Preference shaped joint choices within the shopping mall environment. Conclusions Food sharing practices should be investigated in other settings so as to identify specific behaviours and contexts for targeted and tailored obesity prevention interventions. School-based interventions focusing on price and portion size should be considered. In the Sowetan context, larger portions of healthy food may improve dietary intake of fruit and vegetables where friends are likely to share portions. © 2012 The Authors

Using Plain Language and Adding Communication Technology to an Existing Health-Related Questionnaire to Help Generate Accurate Information: Qualitative Study

Background: Low-educated patients are disadvantaged in using questionnaires within the health care setting because most health-related questionnaires do not take the educational background of patients into account. The Dutch Talking Touch Screen Questionnaire (DTTSQ) was developed in an attempt to meet the needs of low-educated patients by using plain language and adding communication technology to an existing paper-based questionnaire. For physical therapists to use the DTTSQ as part of their intake procedure, it needs to generate accurate information from all of their patients, independent of educational level. Objective: The aim of this study was to get a first impression of the information that is generated by the DTTSQ. To achieve this goal, response processes of physical therapy patients with diverse levels of education were analyzed. Methods: The qualitative Three-Step Test-Interview method was used to collect observational data on actual response behavior of 24 physical therapy patients with diverse levels of education. The interviews included both think-aloud and retrospective probing techniques. Results: Of the 24 respondents, 20 encountered one or more problems during their response process. The use of plain language and information and communication technology (ICT) appeared to have a positive effect on the comprehensibility of the DTTSQ. However, it also had some negative effects on the interpretation, retrieval, judgment, and response selection within the response processes of the participants in this study. No educational group in this research population stood out from the rest in the kind or number of problems that arose. All respondents recognized themselves in the outcomes of the questionnaire. Conclusions: The use of plain language and ICT within the DTTSQ had both positive and negative effects on the response processes of its target population. The results of this study emphasize the importance of earlier recommendations to accompany any adaption of any questionnaire to a new mode of delivery by demonstrating the difference and equivalence between the two different modes and to scientifically evaluate the applicability of the newly developed mode of the questionnaire in its intended setting. This is especially important in a digital era in which the use of plain language within health care is increasingly being advocated

Change in what matters to palliative patients: Eliciting information about adaptation with SEIQoL-DW

This study was carried out to investigate the usefulness of the SEIQoL-DW to elicit information about response shifts in palliative patients. The instrument measures individual quality of life and allows respondents to choose, rate and weight important areas of life (cues). We explored patients' reconceptualizations (ie, change in cues) and their value change (ie, change of cues weights). Results of 21 patients showed what mattered to these patients and how they had adjusted to deteriorating health. There is a risk that repeated measurements do not provide all the information that is potentially present and relevant to explore response shifts. But clear instructions to interviewers, such as careful listening, probing self-evident cues such as health and family, and accurate recording of cues on the forms may overcome this risk. Future research is recommended to explore the possibilities of regular assessments to facilitate better adjustment of patients

Exploring Large Digital Library Collections Using a Map-Based Visualisation

In this paper we describe a novel approach for exploring large document collections using a map-based visualisation. We use hierarchically structured semantic concepts that are attached to the documents to create a visualisation of the semantic space that resembles a Google Map. The approach is novel in that we exploit the hierarchical structure to enable the approach to scale to large document collections and to create a map where the higher levels of spatial abstraction have semantic meaning. An informal evaluation is carried out to gather subjective feedback from users. Overall results are positive with users finding the visualisation enticing and easy to use

Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study

Background and Objective: New treatments for haemophilia are under development or entering the market, including extended half-life products, designer drugs and gene therapy, thereby increasing treatment options for haemophilia. It is currently unknown how people with haemophilia decide whether to switch to a new treatment. Therefore, the objective of this study was to explore what factors may play a role when Dutch patients and parents of boys with moderate or severe haemophilia make decisions about whether to switch to a different treatment, and how disease and treatment characteristics may affect these decisions. This may aid clinical teams in tailored information provision and shared decision making. Methods: We conducted interviews among adults with moderately severe or severe haemophilia and parents of young boys with severe haemophilia. We aimed to include participants from a variety of backgrounds in terms of involvement in the haemophilia community, age, treatment centre and treatments. Participants were recruited through the Netherlands Haemophilia Society and a haemophilia treatment centre. Semi-structured interviews were recorded and transcribed verbatim. Thematic content analysis was used to analyse the data. Results: Twelve people with haemophilia and two mothers of boys with haemophilia were included. In general, participants reported to be satisfied with their current treatment. However, they considered ease of use of the medication (fewer injections, easier handling, alternative administration) an added value of new treatments. Participants were aware of the high cost of coagulation factor products and some expressed their concern about the Netherlands Haemophilia Society’s long-term willingness to pay for current and novel treatments, especially for increased usage due to high-risk activities. Participants also expressed their concerns about the short- and long-term safety of new treatments and believed the effects of gene therapy were not yet fully understood. Participants expected their treatment team to inform them when a particular new treatment would be suitable for them. Conclusions: With the number of treatment options set to increase, it is important for healthcare providers to be aware of how patient experiences shape patients’ decisions about new therapies

The epigenetic evolution of glioma is determined by the IDH1 mutation status and treatment regimen

Tumor adaptation or selection is thought to underlie therapy resistance in glioma. To investigate longitudinal epigenetic evolution of gliomas in response to therapeutic pressure, we performed an epigenomic analysis of 132 matched initial and recurrent tumors from patients with IDH-wildtype (IDHwt) and IDH-mutant (IDHmut) glioma. IDHwt gliomas showed a stable epigenome over time with relatively low levels of global methylation. The epigenome of IDHmut gliomas showed initial high levels of genome-wide DNA methylation that was progressively reduced to levels similar to those of IDHwt tumors. Integration of epigenomics, gene expression, and functional genomics identified HOXD13 as a master regulator of IDHmut astrocytoma evolution. Furthermore, relapse of IDHmut tumors was accompanied by histological progression that was associated with survival, as validated in an independent cohort. Finally, the initial cell composition of the tumor microenvironment varied between IDHwt and IDHmut tumors and changed differentially following treatment, suggesting increased neo-angiogenesis and T-cell infiltration upon treatment of IDHmut gliomas. This study provides one of the largest cohorts of paired longitudinal glioma samples with epigenomic, transcriptomic, and genomic profiling and suggests that treatment of IDHmut glioma is associated with epigenomic evolution towards an IDHwt-like phenotype

Mapping subnational HIV mortality in six Latin American countries with incomplete vital registration systems

BackgroundHuman immunodeficiency virus (HIV) remains a public health priority in Latin America. While the burden of HIV is historically concentrated in urban areas and high-risk groups, subnational estimates that cover multiple countries and years are missing. This paucity is partially due to incomplete vital registration (VR) systems and statistical challenges related to estimating mortality rates in areas with low numbers of HIV deaths. In this analysis, we address this gap and provide novel estimates of the HIV mortality rate and the number of HIV deaths by age group, sex, and municipality in Brazil, Colombia, Costa Rica, Ecuador, Guatemala, and Mexico.MethodsWe performed an ecological study using VR data ranging from 2000 to 2017, dependent on individual country data availability. We modeled HIV mortality using a Bayesian spatially explicit mixed-effects regression model that incorporates prior information on VR completeness. We calibrated our results to the Global Burden of Disease Study 2017.ResultsAll countries displayed over a 40-fold difference in HIV mortality between municipalities with the highest and lowest age-standardized HIV mortality rate in the last year of study for men, and over a 20-fold difference for women. Despite decreases in national HIV mortality in all countries-apart from Ecuador-across the period of study, we found broad variation in relative changes in HIV mortality at the municipality level and increasing relative inequality over time in all countries. In all six countries included in this analysis, 50% or more HIV deaths were concentrated in fewer than 10% of municipalities in the latest year of study. In addition, national age patterns reflected shifts in mortality to older age groups-the median age group among decedents ranged from 30 to 45years of age at the municipality level in Brazil, Colombia, and Mexico in 2017.ConclusionsOur subnational estimates of HIV mortality revealed significant spatial variation and diverging local trends in HIV mortality over time and by age. This analysis provides a framework for incorporating data and uncertainty from incomplete VR systems and can help guide more geographically precise public health intervention to support HIV-related care and reduce HIV-related deaths.Peer reviewe

Mapping geographical inequalities in childhood diarrhoeal morbidity and mortality in low-income and middle-income countries, 2000–17 : analysis for the Global Burden of Disease Study 2017

Background Across low-income and middle-income countries (LMICs), one in ten deaths in children younger than 5 years is attributable to diarrhoea. The substantial between-country variation in both diarrhoea incidence and mortality is attributable to interventions that protect children, prevent infection, and treat disease. Identifying subnational regions with the highest burden and mapping associated risk factors can aid in reducing preventable childhood diarrhoea. Methods We used Bayesian model-based geostatistics and a geolocated dataset comprising 15 072 746 children younger than 5 years from 466 surveys in 94 LMICs, in combination with findings of the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2017, to estimate posterior distributions of diarrhoea prevalence, incidence, and mortality from 2000 to 2017. From these data, we estimated the burden of diarrhoea at varying subnational levels (termed units) by spatially aggregating draws, and we investigated the drivers of subnational patterns by creating aggregated risk factor estimates. Findings The greatest declines in diarrhoeal mortality were seen in south and southeast Asia and South America, where 54·0% (95% uncertainty interval [UI] 38·1–65·8), 17·4% (7·7–28·4), and 59·5% (34·2–86·9) of units, respectively, recorded decreases in deaths from diarrhoea greater than 10%. Although children in much of Africa remain at high risk of death due to diarrhoea, regions with the most deaths were outside Africa, with the highest mortality units located in Pakistan. Indonesia showed the greatest within-country geographical inequality; some regions had mortality rates nearly four times the average country rate. Reductions in mortality were correlated to improvements in water, sanitation, and hygiene (WASH) or reductions in child growth failure (CGF). Similarly, most high-risk areas had poor WASH, high CGF, or low oral rehydration therapy coverage. Interpretation By co-analysing geospatial trends in diarrhoeal burden and its key risk factors, we could assess candidate drivers of subnational death reduction. Further, by doing a counterfactual analysis of the remaining disease burden using key risk factors, we identified potential intervention strategies for vulnerable populations. In view of the demands for limited resources in LMICs, accurately quantifying the burden of diarrhoea and its drivers is important for precision public health