Data Shepherding in Nanotechnology. The Initiation

In this paper we describe the pragmatic approach of initiating, designing and implementing the Data Management Plan (DMP) and the data FAIRification process in the multidisciplinary Horizon 2020 nanotechnology project, Anticipating Safety Issues at the Design Stage of NAno Product Development (ASINA). We briefly describe the general DMP requirements, emphasizing that the initial steps in the direction towards data FAIRification must be conceptualized and visualized in a systematic way. We demonstrate the use of a generic questionnaire to capture primary data and metadata description from our consortium (data creators/experimentalists and data analysts/modelers). We then display the interactive process with external FAIR data initiatives (data curators/quality assessors), regarding guidance for data and metadata capturing and future integration into repositories. After the preliminary data capturing and FAIRification template is formed, the inner-communication process begins between the partners, which leads to developing case-specific templates. This paper assists future data creators, data analysts, stewards and shepherds engaged in the multi-faceted data shepherding process, in any project, by providing a roadmap, demonstrated in the case of ASINA.

Development and evaluation of the measurement properties of a generic questionnaire measuring patient perceptions of person-centred care

Background Implementation of person-centred care (PCC) is a challenging undertaking. Thus, a call has been issued for a robust and generic instrument to measure and enable evaluation of PCC across settings and patient groups. This study aimed to develop a generic questionnaire measuring patients’ perceptions of PCC. Further aims were to evaluate its content and measurement properties using a mixed-methods approach entailing Rasch and qualitative content analyses. Methods The study was conducted in three iterative phases. Phase one included six key informants to gain a broad view of the concept. Phase two entailed a Delphi study involving two rounds with eight experts who generated ratings on relevance, readability, comprehensiveness and suggestions for revision. Data were analysed using the Item Content Validity Index in conjunction with qualitative comments to improve the questionnaire. Phase three was performed using a mixed-methods design. Quantitative data were collected from patients (n = 553) responding to the questionnaire who were recruited from six in- and outpatient care units in a health care region in Sweden. Data was analysed using the Rasch measurement model. Qualitative data were based on the respondents’ free-text comments, cognitive interviews (n = 10) and field notes, and then analysed with deductive content analysis. Results A questionnaire was developed and operationalised based on the information given by key informants in phase one and then validated for its content by experts in phase two. In phase three Rasch analyses revealed problems with targeting, thresholds and two misfitting items. These problems were corroborated by data from the qualitative analyses, which also revealed some issues of wording and interpretation of items. When thresholds were resolved and two items removed, the questionnaire met the assumptions of the Rasch model. Conclusions Experts gave the questionnaire content high ratings and it met measurement requirements assumed by the Rasch model after revisions. Those problems on targeting that remain need to be addressed in future studies. Meanwhile, we regard the questionnaire as of sufficient quality to be useful in benchmarking PCC.

Building Ambidextrous Supply Chains in SMEs

Ambidexterity involves developing competencies to excel simultaneously on the exploration and exploitation dimensions. Few studies in literature discuss ambidexterity in a supply chain context. The research presented in this paper highlights issues that act as barriers and deserve attention in implementing ambidextrous supply chain strategy in SMEs. To develop a relationship structure existing among these variables, Interpretive Structural Modelling (ISM) technique is used. Further, variables' impact and dependency is calculated using Impact Matrix Cross-Reference Multiplication Applied to a Classification (MICMAC) approach. ISM algorithm proves to be a better tool as compared to a large-scale generic questionnaire based study due to its iterative nature that helps to bring forth issues that are difficult to identify otherwise. SMEs in India under tremendous pressure to excel on exploration and exploitation dimensions would be the major beneficiaries of this study. The hierarchy based structure and the classification of factors based on their impact and dependence, will enhance the understanding of SMEs mangers/owners to improve supply chain performance by eliminating barriers and thereby implementing ambidextrous strategy across the supply chain.

Altered quality of life in Rendu-Osler-Weber disease related to recurrent epistaxis

OBJECTIVES: Development and validation of an epistaxis-specific quality-of-life questionnaire (EQQoL) to evaluate the impact on quality of life of epistaxis, during hereditary hemorrhagic telangiectasia (HHT). STUDY DESIGN: Prospective clinical study using QoL instruments administered twice in HHT patients. PATIENTS AND METHODS: In total, 109 patients who had epistaxis and a clinical diagnosis of HHT according to Curacao criteria were included. Invoice of the questionnaire in 2004 and 2006 included SF-36, Jenkins` sleep scale and the new epistaxis-specific13-item EQQoL. RESULTS: EQQoL uptake rate was 98%, mean score 58/100 +- 27, and Cronbach alpha 0.96. EQQoL was sensitive to change with a strong correlation with the course of epistaxis. Factorial analysis showed that EQQoL was clearly distinct from SF-36 and Jenkins sleep scales. In stepwise multivariate ordinal logistic regression, frequency and duration of epistaxis were both associated with lower EQQoL. Conversely, visceral involvement and comorbidity had independent impact on SF-36 scores, but not on EQQoL. CONCLUSIONS: This new epistaxis-specific EQQoL questionnaire provides complementary information on the impact of HHT on patients quality of life relative to the SF-36 generic questionnaire. After international validation, the EQQoL might prove a useful tool for treatment evaluation.

Quality of Life Assessment at Diagnosis and after Different Treatment Phases in Multiple Myeloma Brazilian Patients

Multiple myeloma (MM) causes great impact in quality of life (Q/L), since patients become dependant of others even for routine activity execution and personal care. Objectives: To characterize the impact of MM in the Q/L of patients treated in two public institutions of Sao Paulo State, Brazil, using a generic (SF-36) and a specific questionnaire for oncologic patient (QLQ-C30), applied in three different moments: at diagnosis, after the end of clinical treatment and at day +100 after autologous hematopoietic stem cell transplant (ASCT). Patients and methods: From March 2006 to August 2007 we evaluated 49 patients with MM, using the two questionnaires. Analysis was made through ANOVA, Post hoc and T-paired test comparing the three groups. Results: 88.6% of included patients have family budget lower than US$ 600.00/month (Economic Class C, D or E). The generic questionnaire SF-36 demonstrated that Physical Functioning, Role-Physical and Bodily Pain were statistically different in all three groups, favoring the day +100 post-ASCT group (ANOVA). SF-36 still demonstrated improvement in Role-Emotional when MM post treatment group was compared with the day + 100 post-ASCT group (T-paired Test). The QLQ-C30 questionnaire confirmed what had been demonstrated by the SF-36 in relation to the Physical Functioning and Bodily Pain plus improvement in the following aspects: Role Functioning, Fatigue, Lack of Appetite and Constipation, favoring the day + 100 post-ASCT group (ANOVA). QLQ-C30 also detected a significant improvement in Social Aspect in patients with MM after day +100 of ASCT. Conclusion: The specific questionnaire for cancer patients QLQ-C30 seems to be more informative than the generic questionnaire SF-36 and reflects the real benefit of ASCT in Q/L of MM patients from two public Brazilian institutions, which provide assistance for economically challenged population.