The adaptations of a quality of life questionnaire for routine use in clinical practice: the Chronic Respiratory Disease Questionnaire in Cystic Fibrosis.

The assessment of quality of life (QOL) is necessary to monitor the course of disease and to assess the effect of new and existing interventions in clinical practice. This will only be achieved if QOL can be measured accurately and routinely. The aim of this study was to demonstrate the methodology involved in the adaptation and shortening of the Chronic Respiratory Disease Questionnaire (CRDQ) in a population of adults with cystic fibrosis (CF). A single interviewer administered the CRDQ to a sample of 45 adult patients (32 males) with CF prior to assessment of spirometric measures of lung function. Those patients whose lung function was stable at the time of study, and who could attend for a retest within 14 days, were asked to complete the questionnaire at a subsequent visit (n=10). The average interval between visits was 7 days (range 5-14 days). Correlations between spirometry and CRDQ dimensions ranged from -0.003 to 0.426. The fatigue, emotion and mastery dimensions showed high internal consistency, and adequate construct validity. In the small number of patients suitable for retest, the results indicated that the dimensions exhibited adequate test retest reliability. In contrast low internal consistency was demonstrated for the dyspnoea dimension. The fatigue, emotion and mastery dimensions could be reduced, in terms of their number of items without a substantial loss in explanatory power. This study suggests that QOL measurement can be made convenient, and so more easily accessible for routine clinical assessment.

Generic, disease-specific and individualised approaches to measuring health-related quality of life among people with heart disease - a comparative analysis.

Increasing emphasis is being placed on the evaluation of health-related quality of life. However, there is no consensus on the definition of this concept and as a result there are a plethora of existing measurement instruments. Head-to-head comparisons of the psychometric properties of existing instruments are necessary to facilitate evidence-based decisions about which instrument should be chosen for routine use. Therefore, an individualised instrument (the modified Patient Generated Index), a generic instrument (the Short Form 36) and a disease-specific instrument (the Quality of Life after Myocardial Infarction questionnaire) were administered to patients with ischaemic heart disease (n=117) and the evidence for the validity, reliability and sensitivity of each instrument was examined and compared. The modified Patient Generated Index compared favourably with the other instruments but none of the instruments examined provided sound evidence for sensitivity to change. Therefore, any recommendation for the use of the individualised approach in the routine collection of health-related quality of life data in clinical practice must be conditional upon the submission of further evidence to support the sensitivity of such instruments.

Improving the quality of life for patients with angina pectoris: a team approach to disease management.

The evaluation of outcome of management of angina patients is now inextricably linked with an assessment of quality of life. Angina, as a manifestation of coronary heart disease, is a major cause of morbidity and mortality in many countries. Optimal management of patients with angina is of undeniable national and global significance.

This paper attempts to indicate the importance of a team approach and the implications for patients’ quality of life of involving professionals with a variety of different skills. It outlines current guidelines for the management of angina, including aspects of diagnosis, treatment and rehabilitation. Factors of relevance to the management of patients as individuals are discussed. The association of improved quality of life and reduced severity of symptoms with benefit for both the individual and society is considered.

Visual functioning and quality of life in the subfoveal radiotherapy study (SFRADS): SFRADS report 2

Aims: To determine whether or not self reported visual functioning and quality of life in patients with choroidal neovascularisation caused by age related macular degeneration (AMD) is better in those treated with 12 Gy external beam radiotherapy in comparison with untreated subjects. Methods: A multicentre single masked randomised controlled trial of 12 Gy of external beam radiation therapy (EBRT) delivered as 6x2 Gy fractions to the macula of an affected eye versus observation. Patients with AMD, aged 60 years or over, in three UK hospital units, who had subfoveal CNV and a visual acuity equal to or better than 6/60 (logMAR 1.0). Methods: Data from 199 eligible participants who were randomly assigned to 12 Gy teletherapy or observation were available for analysis. Visual function assessment, ophthalmic examination, and fundus fluorescein angiography were undertaken at baseline and at 3, 6, 12, and 24 months after study entry. To assess patient centred outcomes, subjects were asked to complete the Daily Living Tasks Dependent on Vision (DLTV) and the SF-36 questionnaires at baseline, 6, 12, and 24 months after enrolment to the study. Cross sectional and longitudinal analyses were conducted using arm of study as grouping variable. Regression analysis was employed to adjust for the effect of baseline co-variates on outcome at 12 months and 24 months. Results: Both control and treated subjects had significant losses in visual functioning as seen by a progressive decline in mean scores in the four dimensions of the DLTV. There were no statistically significant differences between treatment and control subjects in any of dimensions of the DLTV at 12 months or 24 months after study entry. Regression analysis confirmed that treatment status had no effect on the change in DLTV dimensional scores. Conclusions: The small benefits noted in clinical measures of vision in treated eyes did not translate into better self reported visual functioning in patients who received treatment when compared with the control arm. These findings have implications for the design of future clinical trials and studies.

From 'Good as Gold' to 'Gold Diggers': Farming Women and the Survival of British Family Farming

The survival of family farming in British agriculture has long been a topic of interest for rural researchers and is undergoing something of a current renewal of interest. However, insights from feminist approaches remain underutilised despite the crucial role farming women continue to play in family farming. This paper addresses the unity of farm, family and business by interpreting it as a patriarchal â??way of lifeâ??. An ethnographic-informed repeated life history methodology is employed to study in detail the family members of seven farms in rural mid-Wales. Findings show that the recent survival of the family farms investigated has been heavily dependent upon compliance with a patriarchal ideology that demands women be â??as good as goldâ??. However, it is discovered that a new view of women is emerging in the world of British family farming, that of â??gold diggerâ??. Women entering relationships with farming men are increasingly being considered a threat to farm survival by virtue of their entitlements if the relationship breaks down. The necessity to study the intricacies of personal relationships in family farming has important implications for most future research into this form of agricultural business arrangement.

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy

Background: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. Methods: 1,174 children aged 8–12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. Results: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. Conclusion: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias