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Introduction: Quality of life is included in the economic evaluation of health services by measuring the preference for health states, i.e. health state utilities. However, most intervention studies include a disease-specific, not a utility, instrument. Consequently, there has been increasing use of statistical mapping algorithms which permit utilities to be estimated from a disease-specific instrument. The present paper provides such algorithms between the MacNew Heart Disease Quality of Life Questionnaire (MacNew) instrument and six multi-attribute utility (MAU) instruments, the Euroqol (EQ-5D), the Short Form 6D (SF-6D), the Health Utilities Index (HUI) 3, the Quality of Wellbeing (QWB), the 15D (15 Dimension) and the Assessment of Quality of Life (AQoL-8D). Methods: Heart disease patients and members of the healthy public were recruited from six countries. Non-parametric rank tests were used to compare subgroup utilities and MacNew scores. Mapping algorithms were estimated using three separate statistical techniques. Results: Mapping algorithms achieved a high degree of precision. Based on the mean absolute error and the intra class correlation the preferred mapping is MacNew into SF-6D or 15D. Using the R squared statistic the preferred mapping is MacNew into AQoL-8D. Implications for research: The algorithms reported in this paper enable MacNew data to be mapped into utilities predicted from any of six instruments. This permits studies which have included the MacNew to be used in cost utility analyses which, in turn, allows the comparison of services with interventions across the health system. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. Pain 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. [ABSTRACT FROM AUTHOR]

Background: The vsMS survey was conducted to better understand the negative effects of fatigue, cognitive impairment, emotional burden, and decreased physical functioning on the personal, professional, and social lives of individuals with multiple sclerosis (MS). Methods: The vsMS survey was an online survey conducted in Australia, Canada, France, Italy, Spain, the United Kingdom, and the United States that assessed the impact of MS on individuals' daily activities, emotional well-being, relationships, and employment. Results: The survey included 1075 participants with relapsing-remitting MS. Almost 42% of participants reported that their ability to perform and manage daily activities had worsened during the previous 2 years. More than 50% reported limitations in daily activities due to fatigue, physical weakness, problems with balance/coordination, heat/cold sensitivity, memory problems, numbness/tingling, trouble concentrating, impaired movement/muscle stiffness, and impaired sleeping. Participants also reported a negative effect on emotional and social factors, including self-esteem, general outlook, well-being, maintaining/ starting relationships, ability to progress in their career/keep their job, and ability to cope with life roles. Conclusions: These data highlight the importance of addressing the impact of MS and the social and emotional disease burdens on daily activities when planning the care of patients with MS. [ABSTRACT FROM AUTHOR]