"I'm still the person I am. Not the body it has become." An active but challenging life with cervical dystonia.

BACKGROUND: Improvement of activity and participation for the disabled and chronically ill is an important aim of rehabilitation. Cervical dystonia is a neurological movement disorder characterized by involuntary contractions of the neck muscles. Until now, research has identified factors contributing to disability rather than factors which may make it easier to be active and participate in the community. OBJECTIVE: Explore and describe perceived experiences of activity and participation in daily life as experienced by persons with cervical dystonia. METHODS: Sixteen informants participated in this semi-structured interview study. Inductive qualitative content analysis was performed to understand and interpret experiences shared by the informants. RESULTS: Results from the analysis generated two themes "An active life" and "A challenging life" and six sub-themes: Using helpful coping strategies, Accepting a new life situation, Adhering to BT treatment, Facing the negative impact of stress, Experiencing a negative self-image and Suffering from pain and fatigue. CONCLUSIONS: Our results support the importance of actions using a rehabilitation approach that consider both motor and non-motor symptoms. Future studies should compare the effects of physiotherapy taking into account wishes and challenges in patients' everyday life versus traditional physiotherapy addressing mostly the motor disorder.

A Consensus Set of Outcomes for Parkinson's Disease from the International Consortium for Health Outcomes Measurement.

BACKGROUND: Parkinson's disease (PD) is a progressive neurodegenerative condition that is expected to double in prevalence due to demographic shifts. Value-based healthcare is a proposed strategy to improve outcomes and decrease costs. To move towards an actual value-based health care system, condition-specific outcomes that are meaningful to patients are essential. OBJECTIVE: Propose a global consensus standard set of outcome measures for PD. METHODS: Established methods for outcome measure development were applied, as outlined and used previously by the International Consortium for Health Outcomes Measurement (ICHOM). An international group, representing both patients and experts from the fields of neurology, psychiatry, nursing, and existing outcome measurement efforts, was convened. The group participated in six teleconferences over a six-month period, reviewed existing data and practices, and ultimately proposed a standard set of measures by which patients should be tracked, and how often data should be collected. RESULTS: The standard set applies to all cases of idiopathic PD, and includes assessments of motor and non-motor symptoms, ability to work, PD-related health status, and hospital admissions. Baseline demographic and clinical variables are included to enable case mix adjustment. CONCLUSIONS: The Standard Set is now ready for use and pilot testing in the clinical setting. Ultimately, we believe that using the set of outcomes proposed here will allow clinicians and scientists across the world to document, report, and compare PD-related outcomes in a standardized fashion. Such international benchmarks will improve our understanding of the disease course and allow for identification of 'best practices', ultimately leading to better informed treatment decisions.

European core curriculum--the students' perspective, Bristol, UK, 10 July 2006.

The International Federation of Medical Students' Associations (IFMSA) and the European Medical Students' Association (EMSA) are proud to present the first outcome-based core curriculum for medicine from the perspective of the medical students of Europe. It covers 76 learning outcomes grouped around nine domains: (1) Clinical Skills, (2) Communication, (3) Critical Thinking, (4) Health in Society, (5) Lifelong Learning, (6) Professionalism-Attitudes, Responsibilities, and Self-development, (7) Teaching, (8) Teamwork, and (9) Theoretical knowledge. The statement is a result of a long process of international workshops, conferences, and discussions on numerous meetings for medical students and health-care professionals all over Europe. Previous conferences resulted in widely recognized policy statements on the 'Bologna Declaration and Medical Education' and 'Quality Assurance in Medical Schools' (Westbye 2004; IFMSA/EMSA 2005). We hope that our European core curriculum from the students' perspective may serve as a foundation for the development of outcome-based core curricula all over Europe, enhancing mobility of students and graduates and promoting excellent health care in the future.