How should we define health?

The WHO definition of health as complete wellbeing is no longer fit for purpose given the rise of chronic disease. Machteld Huber and colleagues propose changing the emphasis towards the ability to adapt and self manage in the face of social, physical, and emotional challenge

Virology Experts in the Boundary Zone Between Science, Policy and the Public: A Biographical Analysis

This article aims to open up the biographical black box of three experts working in the boundary zone between science, policy and public debate. A biographical-narrative approach is used to analyse the roles played by the virologists Albert Osterhaus, Roel Coutinho and Jaap Goudsmit in policy and public debate. These figures were among the few leading virologists visibly active in the Netherlands during the revival of infectious diseases in the 1980s. Osterhaus and Coutinho in particular are still the key figures today, as demonstrated during the outbreak of novel influenza A (H1N1). This article studies the various political and communicative challenges and dilemmas encountered by these three virologists, and discusses the way in which, strategically or not, they handled those challenges and dilemmas during the various stages of the field’s recent history. Important in this respect is their pursuit of a public role that is both effective and credible. We will conclude with a reflection on the H1N1 pandemic, and the historical and biographical ties between emerging governance arrangements and the experts involved in the development of such arrangements

Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the national dementia programme

<p>Abstract</p> <p>Background</p> <p>This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.</p> <p>Methods</p> <p>In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand.</p> <p>Results</p> <p>Almost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care.</p> <p>Conclusions</p> <p>Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.</p

Reducing the use of ineffective health care interventions. CHERE Working Paper 2010/5

This report covers international and Australian models for reducing the use of ineffective interventions, also described as disinvestment. Disinvestment is a development of Health Technology Assessment (HTA). Conventionally HTA has focussed on the introduction of new technologies. Although medical technology is advancing rapidly, there remain very many technologies in use which have not been subject to formal HTA. This has stimulated a growing interest in disinvestment. This review identified a number of case studies and pilot projects. There is limited information available on the mechanisms used, and no rigorous evaluations of their impact. The most developed model is that of NICE which has recently embarked on providing guidance for disinvestment. A number of technologies have been reviewed;but there is limited information available on how these were identified, how disinvestment is implemented, or what the effect has been. There is substantial resistance to any active disinvestment. Across the various case studies, appraisal of candidate technologies seems most likely to be triggered by expert opinion. In Australia, disinvestment is also generally passive. Technologies may be removed from funding or reimbursement if new research demonstrating harms or inefficacy becomes public. More generally, technologies fall into disuse, and are gradually replaced by new or improved technologies. Even when guidelines or funding rules are changed, there is generally continued use of an existing technology. This review has found that active disinvestment has generally been removal of funding for ineffective and/or unsafe technologies, usually initiated by new evidence of inefficacy or harm. Disinvestment is more likely to be passive, ie driven by changes in medical practice, as a procedure or treatment gradually falls out of use over time. There are very few instances of disinvestment, or appraisal for disinvestment, driven by considerations of cost-effectiveness. There are considerable difficulties implementing disinvestment in ineffective health care practices. One area of difficulty is an appropriate mechanism for identifying candidate technologies for appraisal. No explicit processes were identified, although there are a number of published criteria for prioritising candidates. The US is embarking on a major new program of HTA, termed Comparative Effectiveness Research. The list of priority topics for appraisal was developed by the Institute of Medicine, using nominations from health professionals, consumer advocates, policy analysts and others. The development of the candidate topics was a major exercise in itself. Studies of medical practice variations can also be used to identify candidate topics for appraisal. To date, there has been relatively little systematic investigation into practice variations in Australia. The availability of rich data sets which allow analysis on the basis of small areas is essential to research in this field, as is the research capacity to allow rigorous analysis. Program Budgeting and Marginal Analysis is a technique which uses HTA methods to drive disinvestment and reinvestment. It is a relatively resource-intensive activity, and requires clinicians to identify activities for disinvestment. Another area of difficulty arises because there are few or no incentives for clinicians in disinvestment. Thus reinforces the problems of identifying technologies for appraisal. As disinvestment will create losses, to clinicians, to consumers and to providers of the technology, there will be strong resistance to any active withdrawal of funding. At the same time, the additional benefits and/or savings from any disinvestments may not be realised for a considerable period of time and there is a risk that, for some products,interventions or services, cost savings, in particular, may not be realised. This increases the cost of pursuing disinvestment. Both HTA and disinvestment can be seen in a much broader context, that is the challenge is to ensure that the additional health spending brings commensurate benefits ? ensuring health system efficiency. Although there is considerable interest in disinvestment, there are problems in identifying which technologies should be considered for disinvestment, and strong incentives to retain existing technologies. Disinvestment does occur, but generally as a result of existing treatments or other interventions falling into disfavour. An alternative approach to proactive disinvestment of specific technologies is to encourage more rapid change in medical practice. There are various strategies for health care reform which can be categorised as changing provider information, such as through the use of clinical guidelines, or the results of practice variations studies; changing incentives, though different payments for clinicians and other providers, or specifically targeted incentives; changing consumer behaviour, by providing more information with or without financial incentives; or changing the structures of health service delivery to provide organisational support and incentives for more efficient purchasing of care.Disinvestment, Health Technology Assessment, Ineffective health care interventions

Effects of a preconception lifestyle intervention in obese infertile women on diet and physical activity; : A secondary analysis of a randomized controlled trial

Funding: The LIFEstyle study was funded by ZonMw, the Dutch Organization for Health Research and Development, grant number: 50- 50110-96-518. TvE is supported by grants from the Dutch Heart Foundation (2013T085) and the European Commission (Horizon2020 project 633595 DynaHealth). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscriptPeer reviewedPublisher PD

Future care:Advance care planning with older people and their families in general practice

In acute situations older people, family, doctors and nurses can struggle with making decisions regarding care. Consequently, older people may not receive the care they want or undergo unwanted diagnostics and treatments. With this thesis I aimed to contribute to improving such care for older people by gaining insight into the current state of advance care planning (ACP) with older people in the everyday general practice and in how this practice could be improved. Therefore we performed a literature review, qualitative interview studies and a focus group study with, amongst others, older people, family, GPs, primary care nurses, policy makers, and ethicists. The studies in this thesis showed that all older people should have the opportunity to prepare for future decision making, regardless of the level of mental capacity or incapacity in the future. Moreover, doctors should try to have ACP with all frail older people and their families. By ‘preparing’ we mean that older people, family and GPs understand which care may or may not be in the interest of the older person in the future and which care may or may not be possible. The studies in this thesis led to the formulation of ethical conditions, practical recommendations and an information letter and a poster for older people and family, which you can find as an appendix in this thesis. Finally, we suggest a term that better fits with this decision-making process being an open conversation all older people are entitled to: future care conversations

Longitudinal associations of former and current alcohol consumption with psychosocial outcomes among colorectal cancer survivors 1–15 years after diagnosis

We aimed to explore positive and negative associations of consuming alcohol with psychosocial outcomes among colorectal cancer (CRC) survivors. We used data of an observational prospective cohort study, consisting of 2625 Dutch CRC survivors enrolled 1-11 years post-diagnosis that were followed-up in 4 yearly surveys. Generalized estimated equation models were used to examine longitudinal associations between alcohol consumption and anxiety, depression, and health-related quality of life (HRQoL), while correcting for sociodemographic, lifestyle and clinical characteristics. Compared to lifetime abstainers, former alcohol consumption was associated with more depressive symptoms, and worse global quality of life and social functioning, while current drinking was associated with less anxiety, depression and better HRQoL. More drinks per week was associated with less nausea/vomiting. Compared to abstainers, moderate (≤7 drinks/week) and heavy alcohol consumption (>7 drinks/week) were associated with less anxiety and depression and better HRQoL, mostly attributable to wine consumption. Whereas current alcohol consumption was longitudinally associated with less anxiety and depression and better HRQoL, former drinking was associated with worse psychosocial outcomes, although based on a small sample size. It is important to consider that besides the potential negative effects of alcohol on patients’ health, alcohol consumption may be positively related with psychosocial outcomes

Associations between alcohol consumption and anxiety, depression, and health-related quality of life in colorectal cancer survivors

Purpose  Alcohol consumption is a major risk factor for colorectal cancer (CRC). It is currently poorly understood, however, how alcohol and different alcoholic beverage types are related to psychosocial outcomes in CRC survivors.  Methods  We used data of N = 910 CRC survivors from the pooled EnCoRe and PROCORE cohorts and harmonized them into five time points: at diagnosis and 3, 6, 12, and 24 months post-diagnosis. Generalized estimated equation models were used to examine longitudinal associations of alcohol consumption, including consumption of beer, wine, and liquor, with anxiety, depression, and health-related quality of life (HRQoL), while correcting for sociodemographic, lifestyle, and clinical factors.  Results  Survivors were on average 67 years and 37% was female. In the first 2 years post-diagnosis, survivors who consumed more alcoholic drinks/week reported lower anxiety and depressive symptoms and better HRQoL on all domains and symptom scales. This was the case for moderate and heavy amounts of alcohol and mostly for consuming beer and wine, but not for liquor. Associations were more often significant for men and for younger persons (< 67 years at baseline).  Conclusions  Generally, alcohol consumption was observed to be longitudinally related to less anxiety and depression and better HRQoL in CRC survivors. Implications for Cancer Survivors Although alcohol consumption is generally unfavorable due to increased risk of carcinogenesis and worse prognosis after CRC, it seems to be associated with better psychosocial outcomes in the first 2 years after diagnosis and treatment. More research is needed to gain knowledge about reasons for drinking and causality. Netherlands Trial Registry (www.trialregister.nl, NL6904