The PlexiQoL, a patient-reported outcome measure on quality of life in neurofibromatosis type 1-associated plexiform neurofibroma: translation, cultural adaptation and validation into the Dutch language for the Netherlands.

BACKGROUND: Half of the patients with Neurofibromatosis type 1 (NF1) develop one or more tumours called plexiform neurofibromas, which can have a significant impact on Quality of Life (QoL). The PlexiQoL questionnaire is a disease-specific QoL measure for adults with NF1-associated plexiform neurofibromas. The aim of this study was to adapt and validate a Dutch version of the PlexiQoL for the Netherlands. METHODS: The PlexiQoL was translated using the dual-panel methodology, followed by cognitive debriefing interviews to assess face and content validity. The psychometric properties were evaluated by administering the questionnaire on two separate occasions to a sample of adults with NF1 and plexiform neurofibromas. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating Cronbach's alpha coefficient and test-retest reliability, using Spearman's rank correlation coefficients. Mann-Whitney U tests were used to check for known group validity. The Nottingham Health Profile (NHP) questionnaire was used as comparator questionnaire to evaluate convergent validity. RESULTS: The translation and cognitive debriefing interviews resulted in a Dutch version of the PlexiQoL that reflected the original concept and underlying semantic meanings of the UK English version. Forty participants completed the validation survey. The Dutch PlexiQoL demonstrated excellent internal consistency (Cronbach's α 0.825) and test-retest reliability (Spearman correlation coefficient 0.928). The questionnaire detected differences in PlexiQoL scores between participants based on self-reported general health and disease severity. Convergent validity was confirmed for relevant NHP subsections. CONCLUSIONS: The Dutch PlexiQoL demonstrated excellent psychometric properties and can be reliably used to measure plexiform neurofibroma-related QoL in adults with NF1 in the Netherlands.

Adaptation and validation of the Bulgarian version of the Systemic Lupus Erythematosus Quality of Life Questionnaire (L-QoL).

OBJECTIVE: Systemic lupus erythematosus (SLE) is a heterogeneous disease with multiple clinical manifestations, which causes a significant deterioration in the quality of life (QoL). The Systemic Lupus Erythematosus Quality of Life Questionnaire (L-QoL) is a lupus-specific measure used to determine the burden of the disease and it applies the need-based model of QoL. Our aim was to produce the first successfully validated foreign language version of the questionnaire. METHODS: The development of the Bulgarian version involved three stages: translation, field testing and psychometric evaluation. Translation was conducted by an expert linguist working with a developer of the original L-QoL, followed by interviews with monolingual lay individuals. Face and content validity of the translation were assessed by cognitive debriefing interviews with Bulgarian SLE patients. Finally, the L-QoL was validated by administering the questionnaire to a random sample of SLE patients on two occasions, 2 weeks apart to evaluate its reliability and validity. RESULTS: In the validation survey, the new Bulgarian version demonstrated high internal consistency (the Cronbach's alpha coefficient was 0.92), and test-retest reliability (0.97). Additionally, scores on the L-QoL were correlated with those on the SF-36 sections to determine convergent validity and the strongest correlation was observed between L-QoL scores and the social functioning section of the SF-36. Known group validity was established by testing the ability of the Bulgarian L-QoL to distinguish between subgroups of patients from the study pool. CONCLUSIONS: The demonstrated excellent psychometric properties ensure that the Bulgarian L-QoL accurately captures the impact of SLE on the quality of life. Key points • The Bulgarian version of the L-QoL is a valid and reliable measure of QoL in lupus patients. • The Bulgarian version of the L-QoL can be used as an outcome measure in research, clinical trials and routine clinical practice.

SpOT the Correct Tissue Every Time in Multi-tissue Blocks.

Multi-tissue paraffin blocks provide high throughput analysis with increased efficiency, experimental uniformity, and reduced time and cost. Tissue microarrays make up the majority of multi-tissue paraffin blocks, but increasingly, researchers are using non-arrayed blocks containing larger tissues from multiple individuals which can provide many of the advantages of tissue microarrays without substantial investment in planning and equipment. A critical component of any multi-tissue analysis is the orientation method used to identify each individual tissue. Although methods exist to maintain proper orientation and identification of tissues in multi-tissue blocks, most are not well-suited to non-arrayed blocks, may consume valuable space within an array and/or are difficult to produce in the standard histology laboratory. The Specimen Orientation Tag (SpOT) is a simple, low cost orientation tool that is clearly visible in paraffin blocks and all tissue sections for reliable specimen identification in arrayed and non-arrayed layouts. The SpOT provides advantages over existing orientation methods for non-arrayed blocks as it does not require any direct modification to the tissue and allows for flexibility in the arrangement of tissue pieces.

Theory of Mind experience sampling in typical adults.

We explored the frequency with which typical adults make Theory of Mind (ToM) attributions, and under what circumstances these attributions occur. We used an experience sampling method to query 30 typical adults about their everyday thoughts. Participants carried a Personal Data Assistant (PDA) that prompted them to categorize their thoughts as Action, Mental State, or Miscellaneous at approximately 30 pseudo-random times during a continuous 10-h period. Additionally, participants noted the direction of their thought (self versus other) and degree of socializing (with people versus alone) at the time of inquiry. We were interested in the relative frequency of ToM (mental state attributions) and how prominent they were in immediate social exchanges. Analyses of multiple choice answers suggest that typical adults: (1) spend more time thinking about actions than mental states and miscellaneous things, (2) exhibit a higher degree of own- versus other-directed thought when alone, and (3) make mental state attributions more frequently when not interacting (offline) than while interacting with others (online). A significant 3-way interaction between thought type, direction of thought, and socializing emerged because action but not mental state thoughts about others occurred more frequently when participants were interacting with people versus when alone; whereas there was an increase in the frequency of both action and mental state attributions about the self when participants were alone as opposed to socializing. A secondary analysis of coded free text responses supports findings 1-3. The results of this study help to create a more naturalistic picture of ToM use in everyday life and the method shows promise for future study of typical and atypical thought processes.

The effect of salinity on experimental infections of a Hematodinium sp. in blue crabs, Callinectes sapidus.

The parasitic dinoflagellate Hematodinium sp. parasitizes blue crabs along the Atlantic seaboard of the United States. Infections in blue crabs have only been reported from waters where salinity is >11 practical salinity units (psu). Blue crabs maintain a hyperosmotic internal concentration at low salinities (0-5 psu), roughly comparable to 24 psu, and should be capable of maintaining an infection in low-salinity waters even if Hematodinium spp. cells are intolerant of low salinities. We tested this notion by observing the effect of low salinity on the progression of disease in crabs experimentally infected with the parasite. Blue crabs were acclimated to 5 psu or 30 psu salinity treatments. They were inoculated with Hematodinium sp. and necropsied 3, 7, 10, and 15 days post-inoculation. The low-salinity treatment did not have an effect on the proliferation of Hematodinium sp. infections in blue crabs; moreover, a greater proportion of infections in crabs in the low-salinity treatment developed dinospore stages than did those in the high-salinity treatment, indicating that salinity may affect the development of the parasite. However, dinospores from in vitro cultures rapidly became inactive when held in salinities <15 psu. Our experiments indicate that Hematodinium spp. can develop in blue crabs at low salinities, but that the parasite is incapable of transmission in this environment, which explains the lack of natural infections in crabs at low salinities.

Efficient transfer of either one or two dithiolene ligands from nickel to ruthenium: synthesis and crystal structures of [Ru(SCR=CPhS)(2)(PPh(3))] and [RuCl(2)(SCR=CPhS)(PPh(3))(2)] (R = Ph, H).

High yields of two different types of ruthenium dithiolene complex have been obtained by reactions that involve transfer of the dithiolene ligands from the nickel complexes [Ni(SCR=CPhS)(2)] (R = Ph, H) to [RuCl(2)(PPh(3))(3)]. At room temperature one dithiolene is rapidly transferred to yield [RuCl(2)(SCR=CPhS)(PPh(3))(2)], whereas under thermal conditions (refluxing toluene) two dithiolene ligands are incorporated to give [Ru(SCR=CPhS)(2)(PPh(3))]. The crystal structures of the ruthenium bis(dithiolene) complexes indicate that the dithiolene ligands are bonded in the monoanionic form, whereas in the monodithiolene complexes the dithioketone canonical form of the dithiolene ligand is more in evidence, as shown by the average C-S and C=C bond distances in the ligands. This is consistent with both complexes containing Ru(II) centers. The synthesis of the mixed-ligand bis(dithiolene) complex [Ru(SCH=CPhS)(S(2)C(2)Ph(2))(PPh(3))] has been achieved and it is shown that the bis(dithiolene) complexes undergo relatively slow scrambling of the dithiolene ligands in solution. The complex [Ru(SCH=CFcS)(2)(PPh(3))], containing two ferrocenyl-substituted dithiolene ligands, was also prepared, but attempts to establish the degree of electrochemical communication between them were hampered by instability and the irreversible nature of the redox processes.