Background: Previous studies found that 40-60% of the sarcoidosis patients suffer from small fiber neuropathy (SFN), substantially affecting quality of life. SFN is difficult to diagnose, as a gold standard is still lacking. The need for an easily administered screening instrument to identify sarcoidosis-associated SFN symptoms led to the development of the SFN Screening List (SFNSL). The usefulness of any questionnaire in clinical management and research trials depends on its interpretability. Obtaining a clinically relevant change score on a questionnaire requires that the smallest detectable change (SDC) and minimal important difference (MID) are known. Objectives: The aim of this study was to determine the SDC and MID for the SFNSL in patients with sarcoidosis. Methods: Patients with neurosarcoidosis and/or sarcoidosis-associated SFN symptoms (N=138) included in the online Dutch Neurosarcoidosis Registry participated in a prospective, longitudinal study. Anchor-based and distribution-based methods were used to estimate the MID and SDC, respectively. Results: The SFNSL was completed both at baseline and at 6-months’ follow-up by 89/138 patients. A marginal ROC curve (0.6) indicated cut-off values of 3.5 points, with 73% sensitivity and 49% specificity for change. The SDC was 11.8 points. Conclusions: The MID on the SFNSL is 3.5 points for a clinically relevant change over a 6-month period. The MID can be used in the follow-up and management of SFN-associated symptoms in patients with sarcoidosis, though with some caution as the SDC was found to be higher.
‘Creating the Difference’ is the theme of the 2014 edition of the Chi Sparks conference. It is also the challenge that the Human-Computer Interaction (HCI) community is facing today. HCI is a creative field where practitioners engage in design, production, and evaluation of interactions between people and digital technology. Creating excellent interfaces for people, they make a difference in media and systems that people are eager to use. Usability and user experience are fundamental for achieving this, as are abilities at the forefront of technology, but key to a successful difference is getting the right concepts, addressing genuine, intrinsic, human needs. Researchers and practitioners contribute to this area from theory as well as practice by sharing, discussing, and demonstrating new ideas and developments. This is how HCI creates a difference for society, for individuals, businesses, education, and organizations. The difference that an interactive product or service makes might lie in the concept of it but also in the making, the creation of details and the realisation. It is through powerful concepts and exceptional quality of realisation that innovation is truly achieved. At the Chi Sparks 2014 conference, researchers and practitioners in the HCI community convene to share and discuss their efforts on researching and developing methods, techniques, products, and services that enable people to have better interactions with systems and other people. The conference is hosted at The Hague University of Applied Sciences, and proudly built upon the previous conferences in Arnhem (2011) and Leiden (2009). Copyright van de individuele papers ligt bij de betreffende auteurs.
