Abstract
BackgroundThe European Centres of Reference Network for Cystic Fibrosis (ECORN-CF) established an Internet forum which provides the opportunity for CF patients and other interested people to ask experts questions about CF in their mother language. The objectives of this study were to: 1) develop a detailed quality assessment tool to analyze quality of expert answers, 2) evaluate the intra- and inter-rater agreement of this tool, and 3) explore changes in the quality of expert answers over the time frame of the project.MethodsThe quality assessment tool was developed by an expert panel. Five experts within the ECORN-CF project used the quality assessment tool to analyze the quality of 108 expert answers published on ECORN-CF from six language zones. 25 expert answers were scored at two time points, one year apart. Quality of answers was also assessed at an early and later period of the project. Individual rater scores and group mean scores were analyzed for each expert answer.ResultsA scoring system and training manual were developed analyzing two quality categories of answers: content and formal quality. For content quality, the grades based on group mean scores for all raters showed substantial agreement between two time points, however this was not the case for the grades based on individual rater scores. For formal quality the grades based on group mean scores showed only slight agreement between two time points and there was also poor agreement between time points for the individual grades. The inter-rater agreement for content quality was fair (mean kappa value 0.232 ± 0.036, p < 0.001) while only slight agreement was observed for the grades of the formal quality (mean kappa value 0.105 ± 0.024, p < 0.001). The quality of expert answers was rated high (four language zones) or satisfactory (two language zones) and did not change over time.ConclusionsThe quality assessment tool described in this study was feasible and reliable when content quality was assessed by a group of raters. Within ECORN-CF, the tool will help ensure that CF patients all over Europe have equal possibility of access to high quality expert advice on their illness.
Highlights
The European Centres of Reference Network for Cystic Fibrosis (ECORN-Cystic fibrosis (CF)) established an Internet forum which provides the opportunity for CF patients and other interested people to ask experts questions about CF in their mother language
This study describes the development and use of a quality assessment tool for expert answers provided on an Internet platform as part of the ECORN-CF project
This study describes the development and use of a quality assessment tool for expert answers to lay questions within the ECORN-CF Internet platform
Summary
The European Centres of Reference Network for Cystic Fibrosis (ECORN-CF) established an Internet forum which provides the opportunity for CF patients and other interested people to ask experts questions about CF in their mother language. A large multinational study on health which included 29025 CF patients across 35 European countries suggests that the quality of care for CF patients is not equal across Europe [4]. To overcome some of these differences between European countries, the “European Centres of Reference Network for Cystic Fibrosis” (ECORN-CF) project was initiated. The aim of ECORN-CF was to facilitate access to specialized health care counseling for all European CF patients and allow easy access to expert advice in all member state languages. This approach appears reasonable, as Internet access for patients rose significantly in the last 10 years [6,7] and the Internet has become an important medium for patients to get advice on their illness [8,9]
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