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    ABSTRACT: In this review, we attempt to bring the reader up to date with recent developments in the area of assessment of quality of life (QOL) of patients with epilepsy, in both the research and clinical contexts. We present evidence from recent publications on the major and most commonly used QOL instruments for both adults and children with epilepsy, including both strengths and limitations. We discuss both generic measures and ones that have been developed specifically for use in the epilepsy population. We draw attention to some of the broader issues that render the QOL assessment endeavor a somewhat complex one-in particular, that epilepsy is not a single condition, with a common clinical trajectory; and that QOL measures as currently configured almost universally focus on its negative impacts, largely neglecting the possibility of those affected being able to retain reasonable social adjustment and life satisfaction. Finally, we suggest that further work needs to focus on plugging the current evidence gaps in relation to psychometric and cross-cultural applicability issues; and on the value of QOL instruments in the clinical care setting. We conclude by highlighting a number of issues from the QOL literature that will, in our view, be the focus of increasing research interest in the next few years.
    Expert Review of Neurotherapeutics 11/2013;
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    ABSTRACT: Chronic Kidney Disease disproportionately affects the poor in Low and Middle Income Countries (LMICs). Mexico exemplifies the difficulties faced in supporting Renal Replacement Therapy (RRT) and providing equitable patient care, despite recent attempts at health reform. The objective of this study is to document the challenges faced by uninsured, poor Mexican families when attempting to access RRT. The article takes an ethnographic approach, using interviewing and observation to generate detailed accounts of the problems that accompany attempts to secure care. The study, based in the state of Jalisco, comprised interviews with patients, their caregivers, health and social care professionals, among others. Observations were carried out in both clinical and social settings. In the absence of organised health information and stable pathways to renal care, patients and their families work extraordinarily hard and at great expense to secure care in a mixed public-private healthcare system. As part of this work, they must navigate challenging health and social care environments, negotiate treatments and costs, resource and finance healthcare and manage a wide range of formal and informal health information. Examining commonalities across pathways to adequate healthcare reveals major failings in the Mexican system. These systemic problems serve to reproduce and deepen health inequalities. A system, in which the costs of renal care are disproportionately borne by those who can least afford them, faces major difficulties around the sustainability and resourcing of RRTs. Attempts to increase access to renal therapies, therefore, need to take into account the complex social and economic demands this places on those who need access most. This paper further shows that ethnographic studies of the concrete ways in which healthcare is accessed in practice provide important insights into the plight of CKD patients and so constitute an important source of evidence in that effort.
    PLoS ONE 10/2013; 8(1):e54380.
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    ABSTRACT: Organ donation is constructed in the UK as a public responsibility, but more particularly as an obligation for members of minority ethnic communities. This paper draws attention to the ways in which 'ethnicity' has been made problematic by the allocation practices of transplant medicine, health promotion discourses and policy developments. Taken together, they have served to culturalise and racialise the procurement of organs. As the problem of organ donation is as much made inside medicine as outside it, this paper argues greater attention ought to be paid to these institutional practices and processes. Drawing on ethnographic work in the north of England, and with a specific focus on the organ consent encounter, this paper shows how categories of ethnicity in organ transplantation are an outcome of biopolitical and institutional practices. It argues that organ donation is best thought of, less as a discrete temporally-bounded act of decision-making, and more as a set of variegated situated practices that, in all manner of ways, problematically produce the publics that transplant medicine has come to rely upon so profoundly.
    Anthropology & Medicine 10/2013;
  • The European Journal of Public Health 08/2013;
  • Primary Health Care Research & Development 04/2013; 14(2):217-9.
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    ABSTRACT: The World Health Organization's Commission on Social Determinants of Health has called for 'health equity impact assessments' of all economic agreements, market regulation and public policies. We carried out an international study to clarify if existing health impact assessment (HIA) methods are adequate for the task of global health equity assessments. We triangulated data from a scoping review of the international literature, in-depth interviews with health equity and HIA experts and an international stakeholder workshop. We found that equity is not addressed adequately in HIAs for a variety of reasons, including inadequate guidance, absence of definitions, poor data and evidence, perceived lack of methods and tools and practitioner unwillingness or inability to address values like fairness and social justice. Current methods can address immediate, 'downstream' factors, but not the root causes of inequity. Extending HIAs to cover macro policy and global equity issues will require new tools to address macroeconomic policies, historical roots of inequities and upstream causes like power imbalances. More sensitive, participatory methods are also required. There is, however, no need for the development of a completely new methodology.
    Health Promotion International 02/2013;
  • BMJ (online) 01/2013; 347:f7157.
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    ABSTRACT: People with Cystic Fibrosis (CF) in the UK and elsewhere are increasingly surviving into adulthood, yet there is little research on the employment consequences of having CF. We investigated, for the first time in a UK-wide cohort, longitudinal employment status, and its association with deprivation, disease severity, and time in hospital. We did a longitudinal registry study of adults with CF in the UK aged 20 to 40 (3458 people with 15,572 observations between 1996 and 2010), using mixed effects models. Around 50% of adults with CF were in employment. Male sex, higher lung function and body mass index, and less time in hospital were associated with improved employment chances. All other things being equal, being in the most deprived quintile was associated with a reduction of employment prevalence of 17.6 percentage points compared to the prevalence in the least deprived quintile. Having poor lung function was associated with a reduced employment prevalence of 7.2 percentage points compared to the prevalence for people with relatively good lung function. Acting synergistically, deprivation modifies the effect of lung function on employment chances - poor lung function in the least deprived group was associated with a 3 percentage point reduction in employment chances, while poor lung function in the most deprived quintile was associated with a 7.7 point reduction in employment chances. Greater deprivation, disease severity, and time in hospital are all associated with employment chances in adults with CF. Furthermore, our analysis suggests that deprivation amplifies the harmful association of disease severity on employment. Future studies should focus on understanding and mitigating the barriers to employment faced by people with CF.
    PLoS ONE 01/2013; 8(8):e73322.
  • BMJ (online) 01/2013; 347:f4208.
  • Journal of the Royal Society of Medicine 12/2012; 105(12):518-22.
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