Gender Disparities in Access to Pediatric Renal Transplantation in Europe: Data From the ESPN/ERA‐EDTA Registry

Inequalities between genders in access to transplantation have been demonstrated. We aimed to validate this gender inequality in a large pediatric population and to investigate its causes. This cohort study included 6454 patients starting renal replacement therapy before 18 years old, in 35 countries participating in the European Society for Paediatric Nephrology/European Renal Association–European Dialysis and Transplant Association Registry. We used cumulative incidence competing risk and proportional hazards frailty models to study the time to receive a transplant and hierarchical logistic regression to investigate access to preemptive transplantation. Girls had a slower access to renal transplantation because of a 23% lower probability of receiving preemptive transplantation. We found a longer follow‐up time before renal replacement therapy in boys compared with girls despite a similar estimated glomerular filtration rate at first appointment. Girls tend to progress faster toward end‐stage renal disease than boys, which may contribute to a shorter time available for pretransplantation workup. Overall, medical factors explained only 70% of the gender difference. In Europe, girls have less access to preemptive transplantation for reasons that are only partially related to medical factors. Nonmedical factors such as patient motivation and parent and physician attitudes toward transplantation and organ donation may contribute to this inequality. Our study should raise awareness for the management of girls with renal diseases.     

Survey on practice of venom immunotherapy in France

Introduction

Venom immunotherapy (VIT) is the only efficient prevention for sting-induced anaphylaxis, but its application is not without risks and needs precautions and standardization. European guidelines were proposed in 2005, but recent practice surveys and more recent knowledge raise the need for an update. The aim of this study was to analyze VIT practices in France, based on previous surveys in Europe but also extended to outcome event management.

Material and methods

A paper questionnaire was sent widely to persons involved in venom treatment.

Results

Eighty-six responses could be included from physicians actively involved in VIT induction evenly distributed in France. The survey shows that VIT was engaged from grade III down to grade I reactions, starting preferentially with the ultra-rush protocol. Premedication was used by 42% only and risks induced by co-treatment with β-blockers were well known but not with angiotensin-converting enzyme inhibitors. However, side effects were very variably managed from arrest to enhancement in doses, time-delay or duration. Similarly, we observed a large discrepancy in treatment evaluation (skin tests, biology, timing and interpretation), decision making for treatment termination (when and how long to be prolonged) and post-treatment follow-up (adrenaline kit, event record) as well as procedures in case of late relapse (new induction, different doses).

Conclusions

Our study shows that most recommendations were fully or partially followed and may need reminding, but many points need to be completed or updated with new tools and knowledge acquired during the last 10 years.     

Setting priorities in global child health research investments: assessment of principles and practice

This article reviews theoretical and practical approaches for setting priorities in global child health research investments. It also provides an overview of previous attempts to develop appropriate tools and methodologies to define priorities in health research investments. A brief review of the most important theoretical concepts that should govern priority setting processes is undertaken, showing how different perspectives, such as medical, economical, legal, ethical, social, political, rational, philosophical, stakeholder driven, and others will necessarily conflict each other in determining priorities. We specially address present research agenda in global child health today and how it relates to United Nation's (UN) Millennium Development Goal 4, which is to reduce child mortality by two-thirds between 1990 and 2015. The outcomes of these former approaches are evaluated and their benefits and shortcomings presented. The case for a new methodology for setting priorities in health research investments is presented, as proposed by Child Health and Nutrition Research Initiative, and a need for its implementation in global child health is outlined. A transdisciplinary approach is needed to address all the perspectives from which investments into health research can be seen as priorities. This prioritization requires a process that is transparent, systematic, and that would take into account many perspectives and build on advantages of previous approaches.     

Setting priorities in global child health research investments: addressing values of stakeholders

Aim

To identify main groups of stakeholders in the process of health research priority setting and propose strategies for addressing their systems of values.

Methods

In three separate exercises that took place between March and June 2006 we interviewed three different groups of stakeholders: 1) members of the global research priority setting network; 2) a diverse group of national-level stakeholders from South Africa; and 3) participants at the conference related to international child health held in Washington, DC, USA. Each of the groups was administered different version of the questionnaire in which they were asked to set weights to criteria (and also minimum required thresholds, where applicable) that were a priori defined as relevant to health research priority setting by the consultants of the Child Health and Nutrition Research initiative (CHNRI).

Results

At the global level, the wide and diverse group of respondents placed the greatest importance (weight) to the criterion of maximum potential for disease burden reduction, while the most stringent threshold was placed on the criterion of answerability in an ethical way. Among the stakeholders’ representatives attending the international conference, the criterion of deliverability, answerability, and sustainability of health research results was proposed as the most important one. At the national level in South Africa, the greatest weight was placed on the criterion addressing the predicted impact on equity of the proposed health research.

Conclusions

Involving a large group of stakeholders when setting priorities in health research investments is important because the criteria of relevance to scientists and technical experts, whose knowledge and technical expertise is usually central to the process, may not be appropriate to specific contexts and in accordance with the views and values of those who invest in health research, those who benefit from it, or wider society as a whole.When decisions on investments in health research are made, the term “stakeholders” refers to all individuals and/or groups who have interest in prioritization of those investments. The stakeholders will therefore comprise a large and highly heterogeneous group. Some apparent examples may include research funding agencies (eg, governmental agencies, private organizations, public-private partnerships, international and regional organizations, and taxpayers of a certain region), direct recipients of the funding (eg, researchers and research institutions), beneficiaries of the research (eg, policy makers and the general population of a country), and any other group with interest in prioritization process (eg, advocacy groups, journalists and media, lawyers, economists, experts in ethics, and many others).Two fundamental characteristics of any acceptable and successful priority setting process are legitimacy and fairness (1). In order to ensure the legitimacy and fairness of the priority setting decisions in health research investments, involvement of a wide range of stakeholders (and/or eliciting their values) is needed. Unfortunately, health research priorities are presently mainly driven by technical experts (2-5). The results of prioritization are therefore in danger of being mostly influenced by their personal views, with minimal input from representatives from the wider community who also may have interest in the process but lack technical expertise. Since the values and criteria important to scientists and technical experts may vary remarkably from those of other relevant stakeholders (6-8), the relevance of eliciting wider stakeholders’ input is increasingly being acknowledged (9-11). However, the main challenge is to develop a systematic, flexible, and repeatable strategy on how this can be achieved in different contexts.The literature on priority setting for health interventions identifies two main strategies: 1) stakeholders’ values may impact decisions through procedural processes (by having access to the decisions and the rationales behind the decisions, and by having the authority to deliberate on the decisions and influence the final outcome); 2) stakeholders’ values can be directly elicited using quantitative methods (through surveys where respondents rank, weigh, or rate their values) and qualitative methods (involving individual interviews, Delphi technique, complaints procedures or group discussions, concept mapping, citizen’s jury, and public meetings) (12). The main challenges in those attempts have mainly been the lack of capacity for some stakeholders to engage in meaningful deliberations (13) and how to practically incorporate the elicited stakeholders’ values in decision-making (12,14). This paper presents our suggestions and experiences on how the values and interests of large and diverse group of stakeholders could still be incorporated in decisions on health research investment priorities. We specified thresholds and weights needed to address stakeholders’ values within CHNRI methodology using three different versions of a questionnaire. We aimed to assess stakeholders’ values for priority setting in global health research investments. We tested questionnaires that presented different levels of complexity and detail of the questions that stakeholders’ representatives would be asked. We also aimed to evaluate different strategies of turning their responses into numerical thresholds and weights.     

Clinical significance of corpus callosum atrophy in a mixed elderly population

Corpus callosum (CC) is the main tract connecting the hemispheres, but the clinical significance of CC atrophy is poorly understood. The aim of this work was to investigate clinical and functional correlates of CC atrophy in subjects with age-related white matter changes (ARWMC). In 569 elderly subjects with ARWMC from the Leukoaraiosis And DISability (LADIS) study, the CC was segmented on the normalised mid-sagittal magnetic resonance imaging (MRI) slice and subdivided into five regions. Correlations between the CC areas and subjective memory complaints, mini mental state examination (MMSE) score, history of depression, geriatric depression scale (GDS) score, subjective gait difficulty, history of falls, walking speed, and total score on the short physical performance battery (SPPB) were analyzed. Significant correlations between CC atrophy and MMSE, SPPB, and walking speed were identified, and the CC areas were smaller in subjects with subjective gait difficulty. The correlations remained significant after correction for ARWMC grade. In conclusion, CC atrophy was independently associated with impaired global cognitive and motor function in subjects with ARWMC.