A Reappraisal of the Architectural Legacy of King-Stadholder William III and Queen Mary II: Taste, Passion and Frenzy

This article reappraises the architectural legacy of King William III and Queen Mary II on the basis of an examination of all of the building projects relating to castles and palaces in Great Britain and the Low Countries during their reign. In both countries William and Mary were continuously renovating and adding additions to already existing castles and palaces as well as creating new ones, always simultaneously combining various projects. The authors propose that the extent of William and Mary’s architectural endeavours has so far been underestimated, primarily because these have not been assessed as an ensemble. Similarly, the monarchs’ great interest in the interior of their residences, and especially in their painting collections, has not been sufficiently acknowledged. This article brings together two academic traditions at both sides of the North Sea: on the basis of primary sources such as the diaries of Constantijn Huygens Jr, travel accounts and probate inventories, both the motivation for their frantic building can be discerned, as well as the quality, scope and cultural agency of the architectural and art programmes of William and Mary

De architectuur en beleving van de hermitage (1770-1860):De hut, de heremiet(pop) en de hang naar eenzaamheid in de Nederlandse landschapstuin

De hermitage is een weinig onderzocht en begrepen tuinsieraad. De hermitage als plek om je in terug te trekken kwam voor van de oudheid tot diep in de negentiende eeuw, omdat deze mensen in verschillende perioden aansprak en eenvoudig kon worden aangepast aan de specifieke wensen van de adellijke, religieuze of intellectuele eigenaar en de smaak van de tijd. Dit artikel presenteert nieuw onderzoek naar de hermitage op de Nederlandse buitenplaats, op basis van een analyse van verkoopadvertenties, primair bronnenonderzoek (voornamelijk reisbeschrijvingen) en literatuuronderzoek. De hermitage was een wijdverbreid fenomeen in Nederland. Met de huidige inventarisatie is het aantal bekende buitenplaats-hermitages bijna verdriedubbeld van 36 naar ruim honderd. Op basis van deze nieuwe, grotere dataset bleek het mogelijk met meer precisie uitspraken te doen over de periode waarin de hermitage populair was, over de verspreiding van de hermitage in Nederland, de locatie in de tuin, het uiterlijk en de betekenis van de hermitage. Door de zoektocht in digitaal ontsloten historische kranten zijn vooral de iets latere, kleinere hermitages ontdekt. Waar Gelderland voorheen werd beschouwd als de voornaamste hermitageprovincie, is dit beeld met de huidige stand van wetenschap gekanteld in het voordeel van Holland. De burgerlijke signatuur van de hermitage is hiermee versterkt: de hermitage kwam het meest voor op de buitenplaatsen van stedelijke regenten gelegen in de nabijheid van de stad. Hermitages werden in de beginjaren vooral gezien als rariteit, en later als vast onderdeel van een landschappelijk aangelegd park. Maar ze vormden nooit het meest belangrijke tuinsieraad van een landschapspark. Uit het onderzoek blijkt dat vrijwel altijd is gekozen voor een geïsoleerde ligging. Het interieur van de hermitages was sober en bestond in de regel uit een of meerdere stoelen, een bank of bed, een doodshoofd of doodskist, een zandloper, boeken en een (houten) heremietpop. Dat de inrichting van de hermitage sterk gestandaardiseerd was, blijkt ook uit evaluaties van kluizenaarshutten in reisverslagen. De populariteit van de hermitage suggereert dat Nederlanders zeker niet ongevoelig waren voor de Romantiek, zoals nog altijd vaak wordt aangenomen. Het feit dat de bronnen zo weinig bewijs leveren voor cynisme ten aanzien van het fenomeen van de hermitage en de heremiet bevestigt deze these. Tegelijkertijd voorzag de kluizenaarshut in een meer universele behoefte, in plaats van een romantische: door de tijd heen zijn er altijd vertrekken gecreëerd waar mensen – meestal uit de elite – zich konden terugtrekken. In die zin was de hermitage een pendant van het kabinet of de studio. Wat overbleef na het opdrogen van de verheven gevoelens en gedachten van de Romantiek, was de wandeling naar de hermitage en bij aankomst de rust en het uitzicht. De Nederlandse hermitage reflecteert in alles de Nederlandse buitenplaats: beide waren vooral burgerlijk, wijdverbreid, stedelijk, bescheiden in omvang en aankleding

Views of patients and parents of children with genetic disorders on population-based expanded carrier screening

Objective Faster and cheaper next generation sequencing technologies have enabled expansion of carrier screening for recessive disorders, potentially facilitating population-based implementation regardless of ancestry or family history. Little is known, however, about the attitudes regarding population-based carrier screening among families with genetic disorders. This study assessed views among parents and patients with a recessive disorder and parents of children with Down syndrome (DS) on expanded carrier screening (ECS). Method In total, 85 patients with various recessive disorders, 110 parents of a child with a recessive disorder and 89 parents of a child with DS participated in an online survey in the Netherlands. Severity of recessive disorders was classified as mild/moderate or severe/profound. Results The majority of the (parents of) patients with a recessive disorder had a positive attitude towards population-based ECS, including screening for their own or their child's disorder. DS parents were significantly less positive towards ECS. Subgroup analyses showed that the severity of the disorder, rather than being a patient or parent, influences the attitudes, beliefs and intention to participate in ECS. Conclusion Our findings have important implications for future implementation initiatives as they demonstrate the different perspectives from people with experiential knowledge with genetic disorders

The Normal College News, September 22, 1916

Introduction and Aim: Knowledge on patterns of beliefs about the illness (illness cognitions) can provide insight into individual differences in adjustment to haemophilia. The current study aimed to identify (a) which sociodemographic and disease characteristics were associated with illness cognitions and (b) which illness cognitions were associated with health-related quality of life (HRQOL) in young adult men with haemophilia, besides sociodemographic and disease characteristics. Methods: Young adult men (18-30 years) with haemophilia in the Netherlands participated in an online multicentre cross-sectional study. Participants completed the Pediatric Quality of Life Inventory Young Adult version (PedsQL_YA). Potential sociodemographic determinants were assessed with the Course of Life Questionnaire (CoLQ) and illness cognitions with the Illness Cognition Questionnaire (ICQ). Multiple linear regression analyses were performed to assess potential determinants of illness cognitions and HRQOL. Results: Seventy young adult men with haemophilia (mean age 24.7 years, SD 3.5) participated. Born outside the Netherlands (β −0.24) and >1 bleed past 6 months (β −0.32) were associated with less acceptance of the disease. More acceptance was associated with better HRQOL in all domains: β 0.23-0.39. More helplessness was associated with worse total (β −0.30) and physical (β −0.42) HRQOL. Disease benefits, sociodemographic and disease characteristics were not associated with HRQOL. Conclusion: Illness cognitions are associated with HRQOL in young adult men with haemophilia. Early recognition and identification of illness cognitions are important to facilitate support and psychosocial treatment to optimize young adults’ well-being. Extra attention is needed for young adult men with frequent bleeds because they are at risk of lowered levels of acceptance of the disease

Dutch–Flemish translation of nine pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)®

Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS®) is a new, state-of-the-art assessment system for measuring patient-reported health and well-being of adults and children. It has the potential to be more valid, reliable, and responsive than existing PROMs. The items banks are designed to be self-reported and completed by children aged 8–18 years. The PROMIS items can be administered in short forms or through computerized adaptive testing. This paper describes the translation and cultural adaption of nine PROMIS item banks (151 items) for children in Dutch–Flemish. Methods: The translation was performed by FACITtrans using standardized PROMIS methodology and approved by the PROMIS Statistical Center. The translation included four forward translations, two back-translations, three independent reviews (at least two Dutch, one Flemish), and pretesting in 24 children from the Netherlands and Flanders. Results: For some items, it was necessary to have separate translations for Dutch and Flemish: physical function—mobility (three items), anger (one item), pain interference (two items), and asthma impact (one item). Challenges faced in the translation process included scarcity or overabundance of possible translations, unclear item descriptions, constructs broader/smaller in the target language, difficulties in rank ordering items, differences in unit of measurement, irrelevant items, or differences in performance of activities. By addressing these challenges, acceptable translations were obtained for all items. Conclusion: The Dutch–Flemish PROMIS items are linguistically equivalent to the original USA version. Short forms are now available for use, and entire item banks are ready for cross-cultural validation in the Netherlands and Flanders

Psychometrics of the patient-reported outcomes measurement information system measures in hemophilia:the applicability of the pediatric item banks

Background: The use of patient-reported outcomes measures (PROMs) is important in hemophilia care, as it facilitates communication between patients and clinicians and promotes patient-centered care. Currently, a variety of PROMs with insufficient psychometric properties are used. Patient-reported outcomes measurement information system (PROMIS) measures, including Computer Adaptive Tests, were designed to measure generically and more efficiently and, therefore, are an alternative for the existing PROMs. Objectives: To assess the feasibility, measurement properties, and outcomes of 8 PROMIS pediatric measures for boys with hemophilia. Methods: In this multicenter study, boys with hemophilia completed 8 PROMIS measures and 2 legacy instruments. Feasibility was determined by the number of completed items and floor or ceiling effects (percentage of participants that achieved the lowest or highest possible score). Reliability was assessed as the percentage of scores with a SE ≤ 4.5. Construct validity was evaluated by comparing the PROMIS measures with the legacy instruments. Mean PROMIS T-scores were calculated and compared with the Dutch general population. Results: In total, 77 boys with hemophilia participated. Reliability was good for almost all PROMIS measures and legacy instruments. The total number of completed items varied from 49 to 90 for the PROMIS pediatric measures, while the legacy instruments contained 117 to 130 items. Floor and ceiling effects were observed in both the PROMIS measures (0-39.5%) and legacy instruments (0-66.7%), but were higher for the legacy instruments. Conclusions: The PROMIS pediatric measures are feasible to use for boys with hemophilia. With the use of the PROMIS measures in clinical care and research, a step toward worldwide standardization of PROM administration can be taken.</p

Professional functioning of young adults with congenital coagulation disorders in the Netherlands

Introduction and Aim: Suboptimal health-related quality of life and lowered employment rates found in a previous study in young adults (YA) with congenital coagulation disorders (CCD) in the Netherlands underline the need for more insight into professional functioning of YA with CCD and into determinants of professional functioning. Methods: Young adults (18-30 years) with CCD participated in a cross-sectional study. Professional functioning was assessed with the Work Productivity and Activity Impairment questionnaire (WPAI). Potential determinants were assessed with the Course of Life Questionnaire (CoLQ), Pediatric Quality of Life Inventory Young Adult version (PedsQL_YA), Illness Cognition Questionnaire (ICQ) and Haemophilia Activities List (HAL). Logistic regression analyses were performed in the complete sample of YA with CCD, and in YA men with haemophilia separately, to examine determinants of WPAI outcomes. Results: Ninety-four YA (77 men; mean age 24.1 years, SD 3.5 and 17 women; mean age 24.5 years, SD 3.8) with CCD (74% haemophilia A/B) participated. 74.5% of YA wer