Providing health checks as incentives to retain blood donors — evidence from two field experiments

The collection of blood given by donors has proven to be a substantial societal and a managerial challenge. Consequently, blood donation services seek for incentive mechanisms to retain donors. However, economic or material rewards might entail negative side effects such as motivational crowding out or even attracting “bad blood”. In an effort to increase the retention of established blood donors, we conducted two randomized field trials (N1 = 53,257, N2 = 31,522) in cooperation with the German Red Cross Blood Donation Service and tested the effectiveness of an incentive strategy that is directly related to the blood donation itself: offering a comprehensive blood health check. Contrary to previous related research, we found substantial positive effects of a comprehensive blood health check incentive on donation behavior. In addition, unlike previous studies, we examine effects of repeated exposure to this incentive and do not find any wearout effects. Considering the positive effect of this incentive on donor retention and the relative low cost for providing this service to donors, our findings suggest that offering comprehensive blood health check incentives is a viable and cost-efficient marketing strategy to increase the retention among previous donors even if offered over the longer run.Accepted manuscrip

Pulmonary medium vessel vasculitis in an 11 year old boy: Hughes Stovin syndrome as a variant of polyarteritis nodosa?

We present the case of an 11-year-old boy presenting with haemoptysis, dyspnoea and weight loss as a manifestation of isolated pulmonary vasculitis, leading to pulmonary hypertension. He also appeared to have a longstanding dural venous sinus thrombosis. This rare presentation, especially in childhood, might represent a case of the seldomly reported Hughes-Stovin syndrome. The patient achieved remission after therapy with cyclophosphamide pulses and high-dose steroids. Based on the presented case and review of the literature, we propose that this syndrome might be a variant of polyarteritis nodosa. This report highlights diagnostic issues and describes a successful treatment regimen

Broadening the Scope of Diversity Management : Strategic Implications in the Case of the Netherlands

Depuis 1985 à aujourd'hui, le chômage chez les groupes ethniques des Pays-Bas est demeuré trois ou quatre fois plus élevé que celui de la main-d’œuvre indigène. Récemment, le gouvernement et le monde des affaires ont adopté une stratégie cruciale de gestion de la diversité visant à changer cette situation. Cet article se veut une analyse des instruments tant théoriques que pratiques dans ce domaine. Pour une analyse plus concrète, nous avons retenu le cas des Pays-Bas, où la compréhension que l'on a de la gestion de la diversité concerne principalement les relations entre des gens de différents antécédents raciaux ou ethniques au sein des organisations de travail.Aux Pays-Bas, trois approches dominent dans le discours de la gestion de la diversité. Une première, celle de l'insuffisance, cherche à expliquer le chômage chez les minorités ethniques en l'attribuant à un manque général de qualifications et à une inhabileté à s'adapter à la culture organisationnelle des entreprises hollandaises. Une deuxième, celle de la discrimination, porte sur le préjudice et sur l'exclusion ethnique systémique dans les entreprises. Enfin, une troisième approche, celle de la différenciation, fait ressortir l'idée que les groupes et les individus appartiennent à différents systèmes culturels qui imprègnent leurs interactions. En nous fondant sur une analyse critique de chacune de ces approches, nous en sommes venus à la conclusion que le discours hollandais sur la gestion de la diversité fait preuve de partialité, ce qui empêche d'aborder des situations problématiques dans une perspective plus large, des situations qui caractérisent des contextes organisationnels réels et complexes; ce qui fait appel également à des solutions standards au lieu d'approches inventives. Au sein des pratiques de la gestion de la diversité aux Pays-Bas, l'accent principal est placé sur les différences culturelles. Cette approche spécifique et son objet, la composition ethnique des organisations de travail, se sont institutionnalisés tout comme les activités de conseil dans les domaines de la formation et de l'intervention. Le fait de gérer cette diversité prend la forme de services additionnels qu'on souhaite se procurer comme un remède miracle aux problèmes d'adhésion, de communication et de qualifications. L'amélioration des processus de recrutement, de sélection et du fonctionnement quotidien des échanges multi-ethniques devient la cible à atteindre dans le milieu de travail. Tout compte fait, la gestion de la diversité demeure encore aujourd'hui un instrument limité parmi les politiques de gestion des ressources humaines aux Pays-Bas : une manière de faire des affaires comme à l'accoutumé et très peu d'effort au plan de l'innovation organisationnelle. Une pratique étroitement spécialisée et défensive de la gestion de la diversité n'arrivera jamais à réaliser sa promesse d'une plus grande productivité et de justice sociale, si elle continue à faire fi des contextes organisationnels où elle est utilisée.Ces motifs nous incitent à favoriser une approche contextuelle de la gestion de la diversité qui s'éloigne d'une conception de l'organisation comme un reflet passif de la société pour la considérer comme un acteur actif dans les mondes sociaux et comme un construit social autonome. Des milieux organisationnels spécifiques et des échanges sur le terrain confèrent des significations aux différences au plan des qualifications, au plan des cultures et des formes d'inégalité sociale. Pour que la gestion de la diversité puisse apporter des solutions adéquates aux problèmes sur les lieux de travail, elle doit se référer à une idée éclairée de la façon dont une organisation génère des significations et attribue des valeurs. Ceci fait appel à une analyse organisationnelle fine et à des approches sur mesure. Une approche contextuelle opère un glissement de perspective en évitant d'insister sur le statut sensément déviant des minorités ethniques pour mettre en évidence les problèmes auxquels les organisations font face au moment de transiger avec le caractère réflexif de leur activité, dont des exemples cruciaux sont la diversité et l'inégalité sociale. La gestion de la diversité peut devenir alors une source d'innovation organisationnelle plutôt qu'une stratégie défensive. L'introduction de théories traitant du marché du travail, du leadership, de la dynamique et de l'apprentissage organisationnels devient une étape nécessaire pour ce faire. Quant aux pratiques, la référence au contexte englobe des mesures et des méthodes qui permettent de rendre compte d'une façon cohérente à la fois de l'ordre culturel (les valeurs, les attitudes, les connaissances, les comportements) et de l'ordre social (processus de recrutement et de sélection, description et évaluation des emplois, rémunération, feedback, mobilité, interdépendances et conflits d'intérêts) qui ont cours dans les organisations. Le point de départ de cette approche consiste à développer et à renouveler les habiletés à travailler et à vivre ensemble au sein des diverses organisations de travail. Ceci implique la création d'environnements d'apprentissage très puissants, qui invitent à leur tour à la mise sur pied d'équipes de travail diverses, de systèmes de mentors, de l'espace pour les échanges et la réflexion, etc. La formation à l'externe peut être utile dans ce cas seulement si elle est appariée aux processus d'apprentissage qui ont cours. L'analyse contextuelle de la pratique de la gestion de la diversité révèle qu'elle peut certainement par elle-même apporter une contribution à l'un de ses deux objectifs, à savoir le relèvement du niveau de productivité des entreprises dans des sociétés multi-ethniques, même si elle le fait par des moyens défensifs. Elle ne peut cependant espérer promouvoir la justice sociale, son second objectif, qui est de l'ordre d'une distribution égale des occasions sur le marché du travail, de la valorisation des différences culturelles ou des organisations protectrices, si elle n'est pas reliée à des politiques adéquates dans les domaines de l'éducation, du marché du travail et de la lutte contre la discrimination. De là, elle doit alors se mettre activement à la recherche de partenaires externes.La gestion de la diversité fait nécessairement l'objet d'une pratique, lorsque des objectifs de productivité et de justice sociale vont de pair, mais plus souvent qu'autrement ces deux objectifs s'affrontent. Un défi alors se présente qui peut être relevé efficacement par une pratique d'envergure et une conscience aiguë de sa position sur le terrain. La diversité se présente comme un phénomène durable et envahissant à un point tel qu'elle a un impact sur la vie d'une organisation dans la société globale. La lutte contre la discrimination, la valorisation des différences culturelles et le développement de qualifications pertinentes au travail demeureront des activités significatives dans l'avenir. Cependant, de tels efforts porteront des fruits seulement si les organisations sont prêtes à faire face aux conséquences déshumanisantes des aménagements organisationnels, des routines de travail et des échanges soi-disant neutres. Les organisations de travail doivent être en mesure de répondre des conséquences des changements, des risques et des iniquités qu'elles génèrent dans la société. L'approche contextuelle, selon notre point de vue, peut les aider à cheminer dans cette direction et à prendre les mesures nécessaires.An analysis of theories and practices of diversity management, as illustrated in the case of the Netherlands, shows that they are too narrowly focused on redressing imbalances experienced by ethnic minorities and bridging cultural differences between majorities and ethnic minorities in the workplace. Agencies in the field of diversity management have fallen back on a limited and standardized stock of methods that ignore the specificity of organizational dynamics and largely operate in isolation from existing equity policies. The influence of diversity management has thus remained quite superficial. A contextual approach would broaden both the body of thought and the repertory of methods of diversity management, and strengthen its political and social relations. Such an approach would respond to its most challenging tasks: fostering social justice, enhancing productivity, and breaking the circle that equates cultural difference with social inequalityUn analisis de las teorias y practicas de gestion de la diversidad, ilustrado con el caso de los Paises Bajos, muestra que ellas han estado demasiado enfocadas a remediar el déficit del lado de las minorias etnicas y a reducir las diferencias culturales entre mayorias y minorias etnicas en los centres de trabajo. Los agentes en el campo de la gestion de la diversidad se han confinado a un conjunto de métodos limitados y estandardizados que ignoran la especificidad de las dinamicas organizacionales. Estos operan mayoritariamente al margen de las politicas de equidad ya existentes. Como consecuencia de ello, la influencia de la gestion de la diversidad ha quedado en un piano superficial. Una vision de contexto se hace necesaria, que lleve a ampliar el cuerpo de ideas y el repertorio de métodos de gestion de la diversidad y a un fortalecimiento de sus relaciones sociales y politicas, con la mira de prepararse ante los nuevos defios : promover la justicia social y mejorar la productividad, y romper asi el circulo que vincula las diferencias culturales y la desigualdad social

Effect of dexamethasone on quality of life in children with acute lymphoblastic leukaemia: a prospective observational study

<p>Abstract</p> <p>Background</p> <p>Glucocorticoids are important in the treatment of childhood acute lymphoblastic leukaemia (ALL). However, cyclic administration of high dose glucocorticoids may cause rapid and substantial changes in quality of life (QoL). The maintenance phase of the Dutch ALL-9 protocol consisted of alternating two weeks on and five weeks off dexamethasone (6 mg/m²/day). The present study was performed to assess the effect of dexamethasone on QoL during treatment for ALL according to this protocol.</p> <p>Methods</p> <p>In a multicentre prospective cohort study, QoL was assessed halfway (T1) and at the end of the two-year treatment (T2). A generic (Child Health Questionnaire) and disease specific (PedsQL™ cancer version) QoL questionnaire were used to assess QoL in two periods: on and off dexamethasone, respectively.</p> <p>Results</p> <p>41 children (56% males) were evaluated, mean age at diagnosis was 5.6 years. The CHQ physical and psychosocial summary scores were significantly lower than population norms. At T1 and T2, overall QoL showed no significant change. However, regarding specific domains (pain, cognitive functioning, emotion/behaviour and physical functioning) QoL decreased over time. QoL was significantly more impaired during periods on dexamethasone.</p> <p>Conclusion</p> <p>Dexamethasone was associated with decreased QoL. At the end of treatment, reported QoL during dexamethasone deteriorated even more on certain scales (pain, cognitive functioning, emotion/behaviour and physical functioning). Knowledge of the specific aspects of QoL is essential to improve counselling and coping in paediatric oncology. Adverse effects of specific drugs on QoL should be taken into account when designing treatment protocols.</p

Changes in duodenal tissue-associated microbiota following hookworm infection and consecutive gluten challenges in humans with coeliac disease

A reduced diversity of the gastrointestinal commensal microbiota is associated with the development of several inflammatory diseases. Recent reports in humans and animal models have demonstrated the beneficial therapeutic effects of infections by parasitic worms (helminths) in some inflammatory disorders, such as inflammatory bowel disease (IBD) and coeliac disease (CeD). Interestingly, these studies have described how helminths may alter the intestinal microbiota, potentially representing a mechanism by which they regulate inflammation. However, for practical reasons, these reports have primarily analysed the faecal microbiota. In the present investigation, we have assessed, for the first time, the changes in the microbiota at the site of infection by a parasitic helminth (hookworm) and gluten-dependent inflammation in humans with CeD using biopsy tissue from the duodenum. Hookworm infection and gluten exposure were associated with an increased abundance of species within the Bacteroides phylum, as well as increases in the richness and diversity of the tissue-resident microbiota within the intestine, results that are consistent with previous reports using other helminth species in humans and animal models. Hence, this may represent a mechanism by which parasitic helminths may restore intestinal immune homeostasis and exert a therapeutic benefit in CeD, and potentially other inflammatory disorders

The TOSCA Registry for Tuberous Sclerosis-Lessons Learnt for Future Registry Development in Rare and Complex Diseases.

Introduction: The TuberOus SClerosis registry to increase disease Awareness (TOSCA) is an international disease registry designed to provide insights into the clinical characteristics of patients with Tuberous Sclerosis Complex (TSC). The aims of this study were to identify issues that arose during the design, execution, and publication phases of TOSCA, and to reflect on lessons learnt that may guide future registries in rare and complex diseases. Methods: A questionnaire was designed to identify the strengths, weaknesses, and issues that arose at any stage of development and implementation of the TOSCA registry. The questionnaire contained 225 questions distributed in 7 sections (identification of issues during registry planning, during the operation of the registry, during data analysis, during the publication of the results, other issues, assessment of lessons learnt, and additional comments), and was sent by e-mail to 511 people involved in the registry, including 28 members of the Scientific Advisory Board (SAB), 162 principal investigators (PIs), and 321 employees of the sponsor belonging to the medical department or that were clinical research associate (CRA). Questionnaires received within the 2 months from the initial mailing were included in the analysis. Results: A total of 53 (10.4%) questionnaires were received (64.3% for SAB members, 12.3% for PIs and 4.7% for employees of the sponsor), and the overall completeness rate for closed questions was 87.6%. The most common issues identified were the limited duration of the registry (38%) and issues related to handling of missing data (32%). In addition, 25% of the respondents commented that biases might have compromised the validity of the results. More than 80% of the respondents reported that the registry improved the knowledge on the natural history and manifestations of TSC, increased disease awareness and helped to identify relevant information for clinical research in TSC. Conclusions: This analysis shows the importance of registries as a powerful tool to increase disease awareness, to produce real-world evidence, and to generate questions for future research. However, there is a need to implement strategies to ensure patient retention and long-term sustainability of patient registries, to improve data quality, and to reduce biases

Insomnia Symptoms and Daytime Fatigue Co-Occurrence in Adolescent and Young Adult Childhood Cancer Patients in Follow-Up after Treatment:Prevalence and Associated Risk Factors

Simple Summary Insomnia symptoms and daytime fatigue significantly impact physical and psychosocial health. While these are common symptoms in pediatric oncology, relationships between these symptoms remain unclear. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia and daytime fatigue symptoms, and associated risk factors in adolescent/young adult childhood cancer patients in follow-up after treatment. Results showed that around forty percent had insomnia and daytime fatigue symptoms, which often co-occurred. Risk factors that emerged were: female sex and co-morbidities (all), shorter time after treatment and bedtime gaming (insomnia only), young adulthood (insomnia-fatigue and fatigue only), needing someone else to fall asleep and inconsistent wake times (both insomnia groups), and lower educational level and consistent bedtimes (insomnia-fatigue). Overall, insomnia symptoms and daytime fatigue were common and often co-occurred in this patient population. While current fatigue guidelines do not include insomnia symptoms, healthcare providers should inquire about insomnia as this potentially provides additional options for treatment and prevention. Insomnia symptoms and daytime fatigue commonly occur in pediatric oncology, which significantly impact physical and psychosocial health. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia-daytime fatigue symptoms, and associated risk factors. Childhood cancer patients (n = 565, 12-26 years old, >= 6 months after treatment) participated in a national, cross-sectional questionnaire study, measuring insomnia symptoms (ISI; Insomnia Severity Index) and daytime fatigue (single item). Prevalence rates of insomnia and/or daytime fatigue subgroups and ISI severity ranges were calculated. Multinomial regression models were applied to assess risk factors. Most patients reported no insomnia symptoms or daytime fatigue (61.8%). In the 38.2% of patients who had symptoms, 48.1% reported insomnia and daytime fatigue, 34.7% insomnia only, and 17.1% daytime fatigue only. Insomnia scores were higher in patients with insomnia-daytime fatigue compared to insomnia only (p < 0.001). Risk factors that emerged were: female sex and co-morbidities (all), shorter time after treatment and bedtime gaming (insomnia only), young adulthood (insomnia-fatigue/fatigue only), needing someone else to fall asleep and inconsistent wake times (both insomnia groups), lower educational level and consistent bedtimes (insomnia-fatigue). Insomnia symptoms and daytime fatigue are common and often co-occur. While current fatigue guidelines do not include insomnia symptoms, healthcare providers should inquire about insomnia as this potentially provides additional options for treatment and prevention

Psychosexual development, sexual functioning and sexual satisfaction in long-term childhood cancer survivors:DCCSS-LATER 2 sexuality substudy

Objectives: Childhood cancer may negatively impact childhood cancer survivors' (CCS) sexuality. However, this is an understudied research area. We aimed to describe the psychosexual development, sexual functioning and sexual satisfaction of CCS, and identify determinants for these outcomes. Secondarily, we compared the outcomes of a subsample of emerging adult CCS to the Dutch general population. Methods: From the Dutch Childhood Cancer Survivor Study LATER cohort (diagnosed 1963–2001), 1912 CCS (18–71 years, 50.8% male) completed questions on sexuality, psychosocial development, body perception, mental and physical health. Multivariable linear regressions were used to identify determinants. Sexuality of CCS age 18–24 (N = 243) was compared to same-aged references using binomial tests and t-tests. Results: One third of all CCS reported hindered sexuality due to childhood cancer, with insecure body the most often reported reason (44.8%). Older age at study, lower education, surviving central nervous system cancer, poorer mental health and negative body perception were identified as determinants for later sexual debut, worse sexual functioning and/or sexual satisfaction. CCS age 18–24 showed significantly less experience with kissing (p = 0.014), petting under clothes (p = 0.002), oral (p = 0.016) and anal sex (p = 0.032) when compared to references. No significant differences with references were found for sexual functioning and sexual satisfaction, neither among female CCS nor male CCS age 18–24. Conclusions: Emerging adult CCS reported less experience with psychosexual development, but similar sexual functioning and sexual satisfaction compared to references. We identified determinants for sexuality, which could be integrated in clinical interventions for CCS at risk for reduced sexuality.</p

Assessing fatigue in childhood cancer survivors:Psychometric properties of the Checklist Individual Strength and the Short Fatigue Questionnaire––a DCCSS LATER study

BACKGROUND: Fatigue is often reported by patients with childhood cancer both during and after cancer treatment. Several instruments to measure fatigue exist, although none are specifically validated for use in childhood cancer survivors (CCS). The aim of the current study was to present norm values and psychometric properties of the Checklist Individual Strength (CIS) and Short Fatigue Questionnaire (SFQ) in a nationwide cohort of CCS. METHODS: In total, 2073 participants were included from the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort. Normative data, construct validity, structural validity, and internal consistency were calculated for the CIS and SFQ. In addition, reliability and a cutoff score to indicate severe fatigue were determined for the SFQ. RESULTS: Correlations between CIS/SFQ and vitality measures asking about fatigue were high (>0.8). Correlations between CIS/SFQ and measures of different constructs (sleep, depressive emotions, and role functioning emotional) were moderate (0.4–0.6). Confirmatory factor analysis resulted in a four‐factor solution for the CIS and a one‐factor solution for the SFQ with Cronbach's alpha for each (sub)scale showing good to excellent values (>0.8). Test–retest reliability of the SFQ was adequate (Pearson's correlation = 0.88; ICC = 0.946; weighted Cohen's kappa item scores ranged 0.31–0.50) and a cut‐off score of 18 showed good sensitivity and specificity scores (92.6% and 91.3%, respectively). CONCLUSION: The current study shows that the SFQ is a good instrument to screen for severe fatigue in CCS. The CIS can be used as a tool to assess the multiple fatigue dimensions in CCS

Newly Diagnosed and Growing Subependymal Giant Cell Astrocytoma in Adults With Tuberous Sclerosis Complex: Results From the International TOSCA Study.

The onset and growth of subependymal giant cell astrocytoma (SEGA) in tuberous sclerosis complex (TSC) typically occurs in childhood. There is minimal information on SEGA evolution in adults with TSC. Of 2,211 patients enrolled in TOSCA, 220 of the 803 adults (27.4%) ever had a SEGA. Of 186 patients with SEGA still ongoing in adulthood, 153 (82.3%) remained asymptomatic, and 33 (17.7%) were reported to ever have developed symptoms related to SEGA growth. SEGA growth since the previous scan was reported in 39 of the 186 adults (21%) with ongoing SEGA. All but one patient with growing SEGA had mutations in TSC2. Fourteen adults (2.4%) were newly diagnosed with SEGA during follow-up, and majority had mutations in TSC2. Our findings suggest that surveillance for new or growing SEGA is warranted also in adulthood, particularly in patients with mutations in TSC2