Objective: To explore the nature and extent of possible residual complaints among Dutch hypothyroid patients using thyroid replacement therapy, we initiated a comprehensive study measuring health-related quality of life (QoL), daily functioning, and hypothyroidism-associated symptoms in patients and control persons. Methods: An online survey measuring thyroid-specific QoL (ThyPRO), daily functioning, and hypothyroidismassociated symptoms (ThySHI) was distributed among treated hypothyroid patients and control individuals. The advertising text was formulated in an open-ended manner. Patients also provided their most recent thyroid blood values and their thyroid medication. Results: There was a large-sized impairment of QoL (Cohen’s d = 1.04, +93 % ThyPRO score) in hypothyroid patients on thyroid replacement therapy (n = 1195) as compared to controls (n = 236). Daily functioning was significantly reduced i.e., general health (-38 %), problems with vigorous- (+64 %) and moderate activities (+77 %). Almost 80 % of patients reported having complaints despite thyroid medication and in-range thyroid blood values, with 75 % expressing a desire for improved treatment options for hypothyroidism (total n = 1194). Hypothyroid patients experienced 2.8 times more intense hypothyroidism-associated symptoms than controls (n = 865, n = 203 resp). Patients’ median reported serum concentrations were: TSH 0.90 mU/L, FT4 17.0 pmol/L, and FT3 2.67 pmol/L, with 52 % having low T3 levels (<3.1 pmol/L). The QoL was not found to be related to age, sex, BMI, menopausal status, stress, serum thyroid parameters, the origin and duration of hypothyroidism, the type of thyroid medication, or the LT4 dose used. Conclusions: Our study revealed major reductions in quality of life and daily functioning, and nearly three times more intense hypothyroidism-associated symptoms in treated hypothyroid patients as compared to controls, despite treatment and largely in-range serum TSH/FT4 concentrations. The QoL was not associated with serum thyroid parameters. We recommend future research into the origin of persisting complaints and the development of improved treatment modalities for hypothyroidism.
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Citizens regularly search the Web to make informed decisions on daily life questions, like online purchases, but how they reason with the results is unknown. This reasoning involves engaging with data in ways that require statistical literacy, which is crucial for navigating contemporary data. However, many adults struggle to critically evaluate and interpret such data and make data-informed decisions. Existing literature provides limited insight into how citizens engage with web-sourced information. We investigated: How do adults reason statistically with web-search results to answer daily life questions? In this case study, we observed and interviewed three vocationally educated adults searching for products or mortgages. Unlike data producers, consumers handle pre-existing, often ambiguous data with unclear populations and no single dataset. Participants encountered unstructured (web links) and structured data (prices). We analysed their reasoning and the process of preparing data, which is part of data-ing. Key data-ing actions included judging relevance and trustworthiness of the data and using proxy variables when relevant data were missing (e.g., price for product quality). Participants’ statistical reasoning was mainly informal. For example, they reasoned about association but did not calculate a measure of it, nor assess underlying distributions. This study theoretically contributes to understanding data-ing and why contemporary data may necessitate updating the investigative cycle. As current education focuses mainly on producers’ tasks, we advocate including consumers’ tasks by using authentic contexts (e.g., music, environment, deferred payment) to promote data exploration, informal statistical reasoning, and critical web-search skills—including selecting and filtering information, identifying bias, and evaluating sources.
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AimsKnowledge of patient preferences is vital for delivering optimal healthcare. This study uses utility measurement to assess the preferences of heart failure (HF) patients regarding quality of life or longevity. The utility approach represents the perspective of a patient; facilitates the combination of mortality, morbidity, and treatment regimen into a single score; and makes it possible to compare the effects of different interventions in healthcare.Methods and resultsPatient preferences of 100 patients with HF were assessed in interviews using the time trade-off (TTO) approach. Health-related quality of life (HR-QoL) was assessed with the EQ-5D and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). Patients' own estimation of life expectancy was assessed with a visual analogue scale (VAS). Of the 100 patients (mean age 70 ± 9 years; 71% male), 61% attach more weight to quality of life over longevity; while 9% and 14% were willing to trade 6 and 12 months, respectively, for perfect health and attach more weight to quality of life. Patients willing to trade time had a significantly higher level of NT-proBNP and reported significantly more dyspnoea during exertion. Predictors of willingness to trade time were higher NT-proBNP and lower EQ VAS.ConclusionThe majority of HF patients attach more weight to quality of life over longevity. There was no difference between both groups with respect to life expectancy described by the patients. These insights enable open and personalized discussions of patients' preferences in treatment and care decisions, and could guide the future development of more patient-centred care. © 2013 Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2013. For permissions please email: journals.permissions@oup.com.
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Alcohol use disorder (AUD) is a pattern of alcohol use that involves having trouble controlling drinking behaviour, even when it causes health issues (addiction) or problems functioning in daily (social and professional) life. Moreover, festivals are a common place where large crowds of festival-goers experience challenges refusing or controlling alcohol and substance use. Studies have shown that interventions at festivals are still very problematic. ARise is the first project that wants to help prevent AUD at festivals using Augmented Reality (AR) as a tool to help people, particular festival visitors, to say no to alcohol (and other substances). ARise is based on the on the first Augmented Reality Exposure Therapy (ARET) in the world that we developed for clinical treatment of AUD. It is an AR smartphone driven application in which (potential) visitors are confronted with virtual humans that will try to seduce the user to accept an alcoholic beverage. These virtual humans are projected in the real physical context (of a festival), using innovative AR glasses. Using intuitive phone, voice and gesture interactions, it allows users to personalize the safe experience by choosing different drinks and virtual humans with different looks and levels of realism. ARET has been successfully developed and tested on (former) AUD patients within a clinical setting. Research with patients and healthcare specialists revealed the wish to further develop ARET as a prevention tool to reach people before being diagnosed with AUD and to extend the application for other substances (smoking and pills). In this project, festival visitors will experience ARise and provide feedback on the following topics: (a) experience, (b) awareness and confidence to refuse alcohol drinks, (c) intention to use ARise, (d) usability & efficiency (the level of realism needed), and (e) ideas on how to extend ARise with new substances.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
Building Blocks for Liveable Neighbourhoods. Four suburbs in the province of Noord-Brabant are case-studies for a new method of urban development. Participation and scenario's are the starting point. The tools for local stakeholders to (literally) shape their own future environment are the end result.Societal issue: Gap between the plannend world and the daily life in city neighbourhoods. People are eager to take responsibility for their living environment but have no tools or knowledge to do it.Benefit to society: The method developed in this design research project enables the different stakeholders to connect, align and be effective in shaping their common future living environment.
