Evaluation of community-wide interventions: The ecologic case-referent study design

In a setting of long-standing, community-wide and generally accepted prevention activities like youth health care services in The Netherlands, evaluative research in the form of experimental studies is hardly possible. Furthermore, as most interventions will bear fruit only after several years and the effects are often described in rather vague terms, even nonexperimental study designs are fraught with possible difficulties. Although a study design using aggregate data is generally considered inferior or 'incomplete', in many cases, especially in health services research, this approach can be the only one feasible to evaluate the effectiveness of preventive programmes and interventions. In this article we present the ecologic case-referent design as a potentially expedient and valid method for estimating the ecologic effect of a population-wide intervention on the outcome rate in those populations. In this case-referent design, many variables are measured at the individual level, whereas the main exposure variable is measured at an aggregate or ecologic level. Using recently published studies as an example, the advantages and drawbacks of the design are discussed using the randomised controlled trial design as the referent study design

Clinical Ethics Case Study 8: Should we carry out a predictive genetic test in our young patient?

case studyReferral to the Clinical Ethics Committee: A request for genetic testing in childhood. S, a five-year old boy, has recently been seen with his mother C in the paediatric outpatient clinic. Sadly his father N died from metastatic cancer a few months ago, aged 30 years. Other members of N’s family have died in childhood or early adulthood from various forms of cancer. While N was unwell, it was discovered that he carried a mutation in the TP53 gene associated with Li-Fraumeni Syndrome (LFS). LFS is a cancer predisposition syndrome leading to a high risk of various aggressive cancers, including leukaemia, melanoma, soft-issue sarcoma and pancreatic, colon, brain or breast cancer. LFS runs in families and is inherited as an autosomal dominant trait, such that any child of a person with the TP53 gene change will have a 50% risk of inheriting the same mutation and a resultant high chance of developing one of these cancers. The type or age of onset of these cancers cannot be predicted. When N was unwell, his oncologists suggested that S be referred to a clinical genetics service for genetic testing for LFS. At that time the clinical team thought it was appropriate that testing should go ahead, however the laboratory that received the sample for testing let it be known that they thought it was not appropriate to test because S was a minor and that guidelines on genetic testing in children suggested such a test should not be done routinely. Testing therefore did not go ahead. The genetics team then referred S to a consultant paediatrician, recommending annual surveillance in accordance with professional guidelines written by a paediatric oncology society. This surveillance includes a thorough physical examination, routine blood tests (which may reveal leukaemia, for example), abdominal ultrasound to detect intra-abdominal malignancy and other indicated organ-specific surveillance tests. However, none of these measures have been shown to be effective in reducing morbidity or mortality for LFS. When we (the paediatricians) met S and his mother C in the outpatient clinic, we explained the surveillance programme, but indicated that a cancer, if it were to occur, might reveal itself between the annual checks, and might not be detected even if present. We discussed that there is little evidence that surveillance would improve the prognosis even if her son did carry the TP53 gene change. C was also warned that some screening methods, such as CT scanning, produce radiation in high doses and so could actually increase his risk of cancer if he was affected over and above detecting any abnormality. However, MRI scanning would be used when possible. During this recent appointment, C expressed her disappointment that S was not able to receive a genetic test for LFS. She was finding it difficult to manage his at-risk status and was particularly worried that whenever he developed an illness, or abdominal pain (both relatively common in childhood), he would require potentially complex and unpleasant tests. C said that if she knew his gene status, not only would she have greater certainty about what the future held, but unnecessary investigations might be avoided. We established that S was thriving and was not displaying any signs of ill health. We discussed the various issues with C, and although we felt that gene testing was a reasonable option we were concerned that to test now would deny S any say in the matter and that he might (when old enough) decide he would rather not know his risk status. On the other hand, we were also sympathetic to the idea of C’s parental autonomy to make decisions that were best for her family. If S’s status could be established now then he may be able to avoid further screening, although the uncertainty over the benefit of screening is also a difficult issue to resolve. We are approaching the ethics committee with the following questions in mind: 1. Should S be tested now for Li-Fraumeni syndrome? 2. In cases like this, how should we balance the interests of S with those of C or their wider family? 3. If we decide not to test S, how should this be managed in the clinic and with S over time? Or, If we do test him, how should this result be disclosed to S and when? 4. How should intra-disciplinary conflicts, such as a disagreement between the laboratory and the clinical team, be handled in practice?This article was written by Dr Ainsley Newson during the time of her employment with the University of Bristol, UK (2006-2012). Self-archived in the Sydney eScholarship Repository with permission of Bristol University, Sept 2014

ECOLOGY OF THE IMAGE

We know very little about the ecology of our designed world. Contrary to all appearances, design is not about making objects. It is rather about structuring the conditions for life. Design is our second nature, naturalising changes in our ways of living. Yet it also conceals dangers and diminishes our sensitivity to respond to them. The security offered by the televisual image — and the solace of design's promise to remove all environmental risks — are fictions. Ecology of the Image is a critical exploration of idealism in design. Drawing on hermeneutic phenomenology, socio-cultural and design theory, it argues that design is not a value-free practice but structures epistemological attitudes into the world. Ideas are material elements of our environments. This thesis offers an explanation of how idealism circulates within the designed world, fashioning our minds, bodies and environments. The televisual is analysed as a normative phenomenon that inducts us into a way of seeing and understanding the world. Its vision of the affluent good life inspires and gives purpose to desire, and sustains what Manzini has called 'product based well being'. The thesis argues that the televisual puts us out of touch with the consequences of its vision; it diminishes our capacity for forethought. This results in the generation of unacknowledged, yet self-endangering environmental feedback. Environmental problems force us to take account of design's hidden rationales. Only at five minutes to midnight, for example, do we realise that the stock and supply of potable water is endangered. The problem is not so much this late recognition, but that design led us to believe in water's abundance. This situation demands the development of an ecological understanding of our designed worlds that can inform future actions. The sign, particularly as it has been mobilised in cultural theory, plays a leading role in this design situation and the perceptions it supports. The sign is utilised for its ability to denaturalise appearances — to 'read' design's claims on the world. Finally, the thesis turns to the designer-in-training in the process of acquiring instrumental skills and worldviews. It proposes a research strategy that inscribes environmental consciousness into the design process — situating the designer in the midst of semiotic and material worlds. Through its observational methodology it outlines ways of first understanding, then of intervening and generating changes in our 'ideal' world

The role of self-treatment guidelines in self-management education for adult asthmatics

Guidelines on asthma management have changed considerably in the last two decades. Patient education has gained in popularity and especially asthma self-management training is thought to be essential in the treatment of adult asthma. Since 1989 many researchers have added self-treatment guidelines to self-management programmes and several studies have found improvements in health outcomes, such as lung function, quality of life, use of health care facilities and asthma symptoms. However, because of the lack of proper control groups, it is not clear whether this has to be attributed to self-treatment guidelines or to, for example, more education or more medical attention. The only two studies that were placebo controlled did not show an effect of self-treatment. To assess the added benefit of self-treatment guidelines to a self-management programme, randomized ‘placebo’ controlled trials of sufficient size with sufficient follow-up time are necessary. The only difference between intervention and control groups should be guidelines for self-treatment

Long-term effect of ventilation tubes for persistent otitis media with effusion in children.

Contains fulltext : 164159.pdf (publisher's version ) (Open Access

Inhalation technique of 166 adult asthmatics prior to and following a self-management prograM

Self-management of asthma and self-treatment of exacerbations are considered important in the treatment of asthma. For successful self-treatment, medication has to be inhaled correctly, but the percentage of patients inhaling effectively varies widely. As part of a self-management program we checked and corrected inhalation technique. This paper addresses differences among inhalers in relation to patient characteristics and the effect of instruction, 1 year after enrollment. Maneuvers that are essential for adequate inhalation were identified. When errors in inhalation technique were observed, patients were instructed in the correct use of their devices. One year later, inhalation technique was checked again. Only patients who used the same inhaler throughout the entire study period were analyzed. Of the 245 adult asthmatic patients who were enrolled in the self-management program, 166 used the same inhaler throughout the study period. One hundred twenty patients (72%) performed all key items correctly at baseline and this increased to 80% after 1 year. At follow-up, older patients were less likely to demonstrate a perfect inhalation. Patients with a Diskhaler(r) made fewest errors. Adjustment for differences in patient characteristics did not significantly change the results. Because many patients with asthma use their inhaler ineffectively, there is a need to know which inhaler leads to fewest errors. Diskhaler was nominated by this study. When patients are not able to demonstrate adequate inhalation technique in a “tranquil” setting, it is doubtful that they can do so when they experience an exacerbation. Therefore, inhalation instruction should be considered an essential ingredient, not only of self-management programs, but also of asthma patient care in general