Laura Camfield

A prevalence study of primary dystonia in eight European countries

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 disorders (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 writers 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 focus dystonias with the exception of writers cramp. Comparing rates between centres demonstrated significant variations for cervical dystonia, blepharospasm and writers 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.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 disorders (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 writers 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 focus dystonias with the exception of writers cramp. Comparing rates between centres demonstrated significant variations for cervical dystonia, blepharospasm and writers 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.

On Subjective Well-being and 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.

What are the determinants of quality of life in people with cervical dystonia

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 individuals 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.

Impact of cervical dystonia on quality of life.

We studied the effect of cervical dystonia on quality of life in a cohort of 289 patients by using a generic health status measurement scale (SF36). Cervical dystonia had a significant negative impact on quality of life compared with age‐matched general population data. This negative impact was comparable to that seen in multiple sclerosis, Parkinsons disease, and stroke.

Twelve years' experience with the Patient Generated Index (PGI) of quality of life:A graded structured review

The Patient Generated Index (PGI) is an individualised quality of life (QoL) measure that has been in use since 1994. Various adaptations have been made to suit a variety of client groups. The PGI’s psychometric properties have been studied but their review is necessary to inform instrument choice. This article provides a structured review, using grading criteria adapted from those developed to aid outcome measure selection for use with older people. These criteria grade quality of evidence and strength of findings for psychometric validity, providing a useful model for future reviews. All published articles providing data addressing validity, reliability and/or responsiveness were included in the review. Eighteen relevant articles were identified and analysed using the grading criteria. Variable results and quality of investigation were seen. Generally the measure was found to be adequately reliable for group comparisons. The PGI appeared valid but evidence for responsiveness was unclear. Those versions of the measure using fewer points in their Likert scales may have higher reliability. Cognitions involved in QoL judgements remain little understood and investigations of psychometric properties may be enhanced by examination of appraisal processes.

Theorising wellbeing in international development

Development and wellbeing At first sight it appears incongruous to discuss wellbeing in relation to developing countries. Most often, and properly, our attention and concern is for the many people who experience suffering as a consequence of their poverty. However, there are a number of reasons why it is important to confront this apparent incongruity. The first is to acknowledge the fully rounded humanity of poor men, women and children in developing countries; recognising that they are not completely defined by their poverty, nor can they be fully understood in its terms alone. Poor people in developing countries strive to achieve wellbeing for themselves and their children. For the poorest, and in the worst instances, this will largely be a struggle to limit the extent of their illbeing and suffering. But even alongside deprivations, poor men, women and children are able to achieve some elements of what they conceive of as wellbeing, as Biswas-Diener and Diener (2001) demonstrate; without this, we would argue, their lives would be unbearable. Furthermore, it is striking that the non-poor in developing countries can often experience what appear to be high levels of life satisfaction. Wellbeing is far from an irrelevant concept in the study of international development. From this perspective the notion of poverty (or rather poverties) has a number of limitations and the literature around it is becoming increasingly complex and to some extent muddled.

'Translation is not enough’: Using the Global Person Generated Index (GPGI) to assess Individual Quality of Life in Bangladesh, Thailand, and Ethiopia.

Currently few subjective measures of Quality of Life (QoL) are available for use in developing countries, which limits their theoretical, methodological, and practical contribution (for example, exploring the relationship between economic development and QoL, and ensuring effective and equitable service provision). One reason for this is the difficulty of ensuring that translated measures preserve conceptual, item, semantic, operational, measurement; and functional equivalence (Herdman, M., Fox-Rushby, J., & Badia, X. (1998). Quality of Life Research, 7, 331), which is illustrated by an account of the translation, pre-piloting, and administration of a new individualised QoL measure, the Global Person Generated Index or ‘GPGI’. The GPGI is based on the widely used Patient Generated Index (Ruta, Camfield, & Martin, (2004) Quality of Life Research, 13, 1545.) and offers many of the advantages of the participatory approaches commonly used in developing countries, with added methodological rigour, and quantitative outcomes. It was successfully validated in Bangladesh, Thailand, and Ethiopia, using quantitative and qualitative methods—open-ended, semi-structured interviews (SSIs), conducted immediately post-administration. Both the measure and method of ‘qualitative validation’ described later in the paper offer an exciting alternative for future researchers and practitioners in this field. The quantitative results suggest the GPGI shows cultural sensitivity, and is able to capture both the areas that are important to respondents, and aspects of life one would expect to impact on QoL in developing countries. There were strong correlation between scores from the GPGI and SSIs for the area of health, and moderate correlations for ‘material wellbeing’ (MWB)(‘Material wellbeing’ refers to respondents’ perceptions of their achievement in the areas of farming, debt reduction, assets, crops, livestock, job, land, property, and agriculture) and children. Weak to moderate correlations were observed between the Satisfaction with Life Scale and the GPGI; however, the highest coefficient was between the GPGI and the most conceptually similar item. Statistically significant differences were seen in GPGI scores between rich and poor, urban and rural respondents, and different countries. Health and material wellbeing scores, derived from the SSIs, also showed a linear relationship with GPGI scores, with a suggestion of curvilinearity at the higher levels, as predicted by a general QoL causal model. In conclusion, the GPGI has great potential for use in this area, especially when supported by extensive interviewer training, and supplemented with a cognitive appraisal schedule.

Community understandings of childhood transitions in Ethiopia: different for girls?

The paper explores the perspectives of caregivers and other adults on the nature and timing of childhood transitions, elicited through group discussions in five Ethiopian communities, as reflective of the community norms that shape childhood transitions. The paper uses data from Young Lives, a longitudinal study of children growing up in poverty, to investigate the transitions made by girls from childhood to the onset of puberty. It argues that these transitions are rarely linear, singular, or focused on ‘learning’, but instead multiple and often contradictory. While girls are said to be constrained by lack of opportunities, the main constraint to successful transitions in the communities discussed in the paper is having too many potentially contradictory opportunities, too soon.

‘No, living well does not mean being rich’: Diverse understandings of well-being among 11–13-year-old children in three Ethiopian communities

Participatory research into how people living in material poverty define and experience well-being and ill-being is increasingly common in developed and developing countries. Such research highlights the importance of experiential aspects, such as being respected and able to preserve ones dignity, and having meaningful choices. Nevertheless, these findings rarely cover childrens experiences and are often not contextualized or triangulated with other data. The paper will extend this exploration using data from qualitative research with a sub-sample of children aged 11–13 in three urban and rural communities, drawn from Young Lives, a long-term international research project investigating the changing nature of childhood poverty in four countries, including Ethiopia. Firstly, it addresses how understandings of a good life and what is needed to achieve one varies between communities and amongst children of different backgrounds living in those communities; for example, boys and girls and children from richer or poorer households. Secondly, the study examines how ones place in social relationships also contributes to how children perceive and understand what a good life is. The paper confirms the importance of allowing children to take at least a ‘partial role’ in measuring and monitoring their well-being (Ben-Arieh 2005, 575) and provides examples of how this might be done.

Improving the quality of development research: What could archiving qualitative data for reanalysis and revisiting research sites contribute?

As the emphasis on evidence-based policymaking in international development increases, so too should the attention paid to the quality of the research on which this evidence is based. One way to encourage this is by archiving research data to enable reanalysis, but this requirement is often ignored or resisted by development researchers. Similarly, ambivalent feelings are expressed about revisits to former research sites to conduct further research by original and other researchers. In this article, we outline why and how researchers archive and reanalyze qualitative data and revisit research sites, and discuss the potential benefits and challenges of these practices for development research.