24 research outputs found
The development and validation of a disease-specific quality of life measure in hyperhidrosis : the Hyperhidrosis Quality of Life Index (HidroQOL©)
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original authors and the source are credited.PURPOSE: To develop and validate a new disease-specific quality of life measure in hyperhidrosis for use in both routine clinical practice and clinical research. METHODS: Interviews and focus group discussions with hyperhidrosis patients, reported elsewhere, provided the content for the measure validated in this study (n = 71). A panel of dermatologists (n = 5) and patients (n = 7) carried out content validation. Further, item reduction and the initial construct validation were carried out in a cross-sectional study (n = 595), using the unidimensional Rasch analysis and exploratory factor analysis. Subsequently, the construct validity, reliability and responsiveness of the revised measure were assessed in a longitudinal study (n = 260). Data collection for the item reduction and the final validation phases was entirely carried out online. RESULTS: The expert panels judged the HidroQoL as content valid. Rasch analysis supported the revision of response options from five to three. Following removal of misfitting items, a set of 15 items showed optimal fit to the model (chi-squared statistic = 159.64, p = 0.07). Three additional items were retained on consideration of their importance to patients, resulting in an 18-item instrument. The items were grouped into two subscales, daily life activities and psychosocial life domains, based on results of the factor analysis. In subsequent construct validation, the HidroQoL correlated with the DLQI (r s = 0.6, p < 0.01). Reliability was high (internal consistency, Cronbach's alpha: overall scale = 0.9; test-retest reliability, Intra-class correlation = 0.9). The HidroQoL scores were sensitive to change in patients' disease severity (score change from baseline to follow-up after 15-35 days, Cohen's ES = 0.47). CONCLUSION: This study has provided the initial evidence supporting measurement properties and the use of the HidroQoL instrument in both routine clinical practice and in research, for assessing quality of life impacts in hyperhidrosis.Peer reviewedFinal Published versio
Cross-cultural validation of the functional vision questionnaire for children and young people (FVQ_CYP) with visual impairment in the Dutch population: challenges and opportunities
BACKGROUND:To assess cross-cultural validity between Dutch and English versions of the FVQ_CYP, a patient-reported outcome measure developed in the United Kingdom (UK) for children and adolescents with (severe) visual impairment or blindness (VI for brevity) to measure functional vision.
METHODS:The 36-item FVQ_CYP was translated and adapted into Dutch using standard guidelines. The questionnaire was administered to Dutch children and adolescents aged 7-17 years (N = 253) with impaired vision (no restrictions regarding acuity). Data were compared to existing UK data of children and adolescents aged 10-15 years (N = 91) with VI (acuity LogMar worse than 0.48). As with the original UK FVQ_CYP validation, a rating scale model (RSM) was applied to the Dutch data.
RESULTS:Minor adaptations were needed in translation-rounds. Significant differences in item responses were found between the Dutch and UK data. Item response theory assumptions were met, but fit to the RSM was unsatisfactory. Therefore, psychometric properties of the Dutch FVQ_CYP were analysed irrespective of the original model and criteria used. A graded response model led to the removal of 12 items due to missing data, low information, overlapping content and limited relevance to Dutch children. Fit indices for the remaining 24 items were adequate.
CONCLUSIONS:Differences in population characteristics, distribution of responses, non-invariance at the model level and small sample sizes challenged the cross-cultural validation process. However, the Dutch adapted FVQ_CYP showed high measurement precision and broad coverage of items measuring children's functional vision. The underlying reasons for differences between countries in instrument performance are discussed with implications for future studies
Mining Available Data from the United States Environmental Protection Agency to Support Rapid Life Cycle Inventory Modeling of Chemical Manufacturing
Demands
for quick and accurate life cycle assessments create a
need for methods to rapidly generate reliable life cycle inventories
(LCI). Data mining is a suitable tool for this purpose, especially
given the large amount of available governmental data. These data
are typically applied to LCIs on a case-by-case basis. As linked open
data becomes more prevalent, it may be possible to automate LCI using
data mining by establishing a reproducible approach for identifying,
extracting, and processing the data. This work proposes a method for
standardizing and eventually automating the discovery and use of publicly
available data at the United States Environmental Protection Agency
for chemical-manufacturing LCI. The method is developed using a case
study of acetic acid. The data quality and gap analyses for the generated
inventory found that the selected data sources can provide information
with equal or better reliability and representativeness on air, water,
hazardous waste, on-site energy usage, and production volumes but
with key data gaps including material inputs, water usage, purchased
electricity, and transportation requirements. A comparison of the
generated LCI with existing data revealed that the data mining inventory
is in reasonable agreement with existing data and may provide a more-comprehensive
inventory of air emissions and water discharges. The case study highlighted
challenges for current data management practices that must be overcome
to successfully automate the method using semantic technology. Benefits
of the method are that the openly available data can be compiled in
a standardized and transparent approach that supports potential automation
with flexibility to incorporate new data sources as needed