Background: Little is known about the quality of life in patients with cervical dystonia, although pain and depression are relatively common. Objective: To test the hypothesis that an individual's ability to cope with the disease will modify the association of intrinsic, extrinsic, and disease related factors with quality of life. Methods: Patients with cervical dystonia diagnosed by a movement disorder specialist were recruited from seven European countries. Data on quality of life (SF-36), measures of coping, and intrinsic, extrinsic, and disease related factors were collected by a self completed postal questionnaire. Results: 289 patients (101 men and 188 women), mean age 55 years, completed the questionnaire. Both physical and mental quality of life scores were predicted by self esteem and self deprecation, educational level, employment status, social support, response to botulinum toxin, disease severity, social participation, stigma, acceptance of illness, anxiety, and depression. In multivariable analyses, the strongest predictors were anxiety and depression. Severe depression was associated with a 19.1 point decrement in the physical summary score (95% confidence interval, −31.7 to −6.6; p = 0.003); however, disease duration and severity remained predictors. Conclusions: Care for patients with cervical dystonia must not only focus on reducing the severity of the dystonia but also on the psychological wellbeing of the patient. Interventions aimed at treating depression or anxiety, especially of a cognitive nature, may have a large impact on improving quality of life.

We integrate the multi-disciplinary fields of quality of life (QoL) and well-being (WB) and appraise the impacts of health factors. Theoretical and methodological limitations are discussed and new conceptual and technical advances identified, These are informed by cross-cultural and community perspectives. Following a definitional review, social inequalities, and links with happiness are examined. Demographic, experiential and personal factors are outlined. Implications for poverty research are addressed. As the concept of SWB recently converged with the longstanding international QoL definition (WHOQOL Group, 1995), we discuss the separate need for SWB. Future collaborative conceptual and pragmatic research is recommended.

Children, Youth, Wellbeing, Qualitative methods, Participatory approach, Young lives,

No abstract

There have been few epidemiological studies of dystonia. Most previous studies have provided estimates based on few cases. A European prevalence study was undertaken to provide more precise rates of dystonia by pooling data from eight European countries. Diagnosed cases were ascertained by adult neurologists with specialist movement disorder (and botulinum toxin) clinics. The crude annual period prevalence rate (1996-1997) for primary dystonia was 152 per million (95% confidence interval 142-162), with focal dystonia having the highest rate of 117 per million (108-126). Prevalence rates for cervical dystonia, blepharospasm and writer's cramp were as follows: 57 (95% confidence interval 51-63), 36 (31-41), and 14 (11-17). The age-adjusted relative rates were significantly higher in women than in men for segmental and focal dystonias with the exception of writer's cramp. Comparing rates between centres demonstrated significant variations for cervical dystonia, blepharospasm and writer's cramp, probably due to methodological differences. Our results provide the first data on the prevalence of primary dystonia and its subtypes across several European countries. Due to under-ascertainment of cases, our rates should be seen as conservative and an under-estimate of the true prevalence of dystonia.