Unravelling dystonic pain; a mixed methods survey to explore the language of dystonic pain and impact on life.

PURPOSE: Dystonia is a neurological disorder characterised by involuntary muscle contractions. Pain is the primary non-motor symptom, and limited studies have investigated how dystonic pain is experienced. This study aimed to investigate how people with isolated dystonia describe their pain and compare across subgroups of dystonia. METHODS: Anonymous online survey via social media asking participants to describe their pain in their own words, complete the McGill Pain Questionnaire (MPQ), and answer demographic questions. Thematic analysis identified common themes and frequencies were calculated for demographic and MPQ data. RESULTS: One-hundred and sixty-five respondents were included (mean age 51 years, 85% female). Thematic analysis identified four major themes "Physical sensations", "Temporal features", "Destruction", "Impact on life" with several sub-themes. The most chosen MPQ descriptor was "exhausting" followed by "tight," "sharp," "pulling," and "aching". The most common descriptors showed similar prevalence across subgroups of dystonia. CONCLUSION: As no objective tests for pain exist, pain sufferers must use language to describe their pain experience. People with isolated dystonia used sensory words combined with metaphorical language to detail temporal features of pain, as well as destructive internal battles or feelings of external forces acting upon them, and the significant toll pain has on everyday life. Implications for rehabilitationPain is a common and debilitating non-motor symptom for people living with dystonia and should be discussed in a persons treatment plan.Pain sufferers use language to discuss their pain experience with others and report they don't feel well understood by others including health professionals.People with dystonic pain commonly described physical sensations, temporal features, destructive forces, and the impact on life caused by their pain.Findings suggest the experience of pain with dystonia is varied and better pain management options for people with dystonia are needed.

Cancer in the news: Bias and quality in media reporting of cancer research.

Cancer research in the news is often associated with sensationalised and inaccurate reporting, which may give rise to false hopes and expectations. The role of study selection for cancer-related news stories is an important but less commonly acknowledged issue, as the outcomes of primary research are generally less reliable than those of meta-analyses and systematic reviews. Few studies have investigated the quality of research that makes the news and no previous analyses of the proportions of primary and secondary research in the news have been found in the literature. We analysed distribution of study types, research sources, reporting quality, gender bias, and national bias in online news reports by four major news outlets in USA, UK and Australia over six-months. We measured significant variation in reporting quality and observed biases in many aspects of cancer research reporting, including the types of study selected for coverage, the spectrum of cancer types, gender of scientists, and geographical source of research represented. We discuss the implications of these findings for guiding accurate, contextual reporting of cancer research, which is critical in helping the public understand complex science, appreciate the outcomes of publicly-funded research, maintain trust, and assist informed decision-making. The striking gender bias observed may compromise high-quality coverage of research by limiting diversity of opinion, reinforces stereotypes and skews public visibility and recognition towards male scientists. Our findings provide useful guidelines for scientists and journalists alike to consider in providing the most informative and accurate reporting of research.