Margaret Anne Hurley

Longitudinal association between lung function and health-related quality of life in cystic fibrosis

Background Lung function is an important indicator of cystic fibrosis disease status and those with better forced expiratory volume in 1 s (FEV1)% predicted have tended to report a better health-related quality of life (HRQoL) in cross-sectional studies. The relationship between lung function and HRQoL over time is unknown. This work assesses the natural progression of HRQoL reporting over many years and compares assessments across a whole decade and evaluates the relationship between lung function and HRQoL longitudinally. Methods Demographic (age, gender), clinical (FEV1% predicted, body mass index, diabetes, Burkholderia cepacia complex, intravenous access device and nutritional status) and HRQoL (Cystic Fibrosis Quality of Life Questionnaire) variables were obtained every 2 years over a 12-year period (seven time points from 1998 to 2010). Results HRQoL and lung function declined slowly over time and significant decade changes were observed for FEV1% predicted and the nine domains of the Cystic Fibrosis Quality of Life Questionnaire. The results of random coefficient modelling indicated that, at the population level, decreasing FEV1% predicted was associated with decreasing HRQoL after adjusting for confounding variables. However, the percentage of patients for whom a decrease in lung function was associated with a decrease in HRQoL differed according to the quality of life domain. Conclusions HRQoL and FEV1% predicted decline slowly; nevertheless, a decrease in lung function predicted a decrease in HRQoL over time.

Depression and anxiety in adolescents and adults with cystic fibrosis in the UK: A cross-sectional study

BACKGROUND The International Depression/anxiety Epidemiological Study (TIDES) in the UK aimed: (i) to establish the prevalence of anxiety and depression amongst people with CF compared to a normative sample; (ii) to establish the association between mood, demographic and clinical variables; and (iii) to provide guidance for specialist-referral decision-making. METHODS Patients (≥12years) completed the Hospital Anxiety and Depression Scale (HADS). CF-HADS scores, expressed as percentiles, were compared with a normative sample. Multiple-regression analysis explored associations between demographic, clinical and mood variables. RESULTS Thirty-nine CF centres recruited 2065 patients. Adults with CF were similar in terms of anxiety and depression to the general population. Adolescents with CF were less anxious and depressed. For adult patients, older age, unemployment for health reasons and poor lung function were associated with disordered mood. Gender-specific CF-percentile scores were calculated. CONCLUSION Surveillance, with attention to gender and risk factors is advocated. This work provides unique benchmark scores to aid referral decision-making.

Football metaphor and mental well-being: An evaluation of the It's a Goal! programme

Background The Its a Goal! programme utilises football metaphor and football venues as a means to frame and deliver a non-clinical, group-based therapeutic intervention, targeting men with mental health needs. A pilot in the North West of England was hosted by seven professional football clubs in partnership with local Primary Care Trusts. Aims To evaluate the impact of the intervention and to identify the benefits and key components of the approach from the perspective of participants. Method Analysis of impact utilised before and after well-being scores measured on a modified version of the Warwick-Edinburgh Mental Well-being Scale. Focus groups provided additional qualitative data that were analysed thematically. Results Findings suggest that Its a Goal! had a significant impact upon participants well-being. In addition, participants reported a range of positive benefits especially in relation to confidence, self-esteem and developing better coping mechanisms. Participants related these benefits to a number of key components, not least the therapeutic value of football metaphor, the focus on goal-setting and the mutual support developed within the groups. Conclusions Using football metaphor to deliver a group therapeutic programme aimed at men appears to be an effective means of facilitating mental health benefits.

Probation as a setting for building well-being through integrated service provision: evaluating an Offender Health Trainer service

Introduction: The NHS Health Trainer Programme was launched in England and Wales in 2005 with the aim of tackling health inequalities. While initially focusing on geographical communities, the initiative has extended its reach to particular population groups, such as offenders and their families, who experience high levels of physical and mental health needs and wider social exclusion. This paper reports on the evaluation of the Offender Health Trainer service delivered in probation settings in Bury, Rochdale and Oldham (Greater Manchester). This service has sought to improve the health of offenders, improve their access to mainstream services, and help reduce health inequalities – as well as facilitate rehabilitation and improve job prospects for ex-offenders through employment as health trainers. Aims: This evaluative research study aimed to explore the delivery of the Offender Health Trainer service and examine its impact on service users. The study design and limited time frame meant that the research was focused on the journeys of service users rather than on long-term outcomes. Methods: The evaluation used a mixed-methods approach, comprising two key elements: the interrogation and analysis of routinely collected quantitative data extracted from the National Health Trainer Data Collection Recording System (DCRS); and in-depth qualitative research using interviews and focus groups with clients and health trainers. Results: The evaluation points to the overall success of the service in meeting its aims and impacting positively on the lives of offenders. It reveals promising trends in behaviour change and self-perceived health and well-being, articulating a rich narrative detailing how the service has helped probation clients tackle multiple interwoven problems and build hope and self-belief. Of particular importance was the health trainers’ experience of the criminal justice system, which resonated with and inspired clients, developing trust and motivation to change. Conclusions: While the research inevitably had limitations, this study suggests that the health trainer model can be effectively implemented within the probation setting, making a valuable contribution to the improvement of offenders’ health and well-being by working in ways that acknowledge the connections between personal lifestyle and wider determinants of health. Within the context of forthcoming probation reforms, it will be increasingly important to develop services that highlight these links and to invest in appropriate evaluation that can generate further learning about ‘what works and why’.

Longitudinal impact of demographic and clinical variables on health-related quality of life in cystic fibrosis

Objectives The insights that people with cystic fibrosis have concerning their health are important given that aspects of health-related quality of life (HRQoL) are independent predictors of survival and a decrease in lung function is associated with a decrease in HRQoL over time. Cross-sectional data suggest that key variables, other than lung function, are also associated with HRQoL—although study results are equivocal. This work evaluates the relationship between these key demographic and clinical variables and HRQoL longitudinally. Design Longitudinal observational study. Observations were obtained at seven time points: approximately every 2 years over a 12-year period. Setting Large adult cystic fibrosis centre in the UK. Participants 234 participants aged 14–48 years at recruitment. Outcome measure Nine domains of HRQoL (Cystic Fibrosis Quality of Life Questionnaire) in relation to demographic (age, gender) and clinical measures (forced expiratory volume in 1 s, (FEV1)% predicted, body mass index (BMI), cystic fibrosis-related diabetes, Burkholderia cepacia complex, totally implantable vascular access device, nutritional and transplant status). Results A total of 770 patient assessments were obtained for 234 patients. The results of random coefficients modelling indicated that demographic and clinical variables were identified as being significant for HRQoL over time. In addition to lung function, transplant status, age, having a totally implantable vascular access device, cystic fibrosis-related diabetes, BMI and B. cepacia complex impacted on many HRQoL domains longitudinally. Gender was important for the domain of body image. Conclusions Demographic and changes in clinical variables were independently associated with a change in HRQoL over time. Compared with these longitudinal data, cross-sectional data are inadequate when evaluating the relationships between HRQoL domains and key demographic and clinical variables, as they fail to recognise the full impact of the CF disease trajectory and its treatments on quality of life.

Is undernutrition prognostic of infection complications in children undergoing surgery? A systematic review

BACKGROUND Healthcare-associated infections are costly and are increasingly viewed as an indicator of the quality of care. Although strategies to reduce infections have become widespread, few studies have formally investigated the role of undernutrition on the development of infection-related complications in children after surgery. AIM To perform a systematic review of the literature to determine if undernutrition is prognostic of postoperative infection complications in children. METHODS Electronic bibliographic and research databases were searched from 1950 to 2014. Inclusion criteria were studies in children (age <18 years) evaluating pre-operative nutritional status and reporting postoperative infection complications. Quality assessment was performed independently by two reviewers, with disagreements resolved by a third reviewer. The quality of the evidence was judged to be low in the majority of studies. FINDINGS Ten cohort and two case-control studies met the inclusion criteria. Five studies reported an outcome combining infection-related complications, with the remainder reporting individual infection complications. Six studies reported surgical site infection (SSI) alone or in combination with other infection complications. Direct comparison between studies was difficult due to clinical and diagnostic heterogeneity. Unadjusted analyses (for patient or clinical variables) were suggestive of a relationship between undernutrition and infection complications. In studies controlling for other variables, the analyses did not remain significant for SSI. CONCLUSION There was low-quality evidence that undernutrition may be predictive of postoperative infection complications in children, with the exception of SSI. However, inconsistencies in nutritional and outcome assessments made it difficult to draw conclusions. Larger, high-quality studies are warranted to further investigate a potential prognostic relationship.

A reference relative time-scale as an alternative to chronological age for cohorts with long follow-up

BackgroundEpidemiologists have debated the appropriate time-scale for cohort survival studies; chronological age or time-on-study being two such time-scales. Importantly, assessment of risk factors may depend on the choice of time-scale. Recently, chronological or attained age has gained support but a case can be made for a ‘reference relative time-scale’ as an alternative which circumvents difficulties that arise with this and other scales. The reference relative time of an individual participant is the integral of a reference population hazard function between time of entry and time of exit of the individual. The objective here is to describe the reference relative time-scale, illustrate its use, make comparison with attained age by simulation and explain its relationship to modern and traditional epidemiologic methods.ResultsA comparison was made between two models; a stratified Cox model with age as the time-scale versus an un-stratified Cox model using the reference relative time-scale. The illustrative comparison used a UK cohort of cotton workers, with differing ages at entry to the study, with accrual over a time period and with long follow-up. Additionally, exponential and Weibull models were fitted since the reference relative time-scale analysis need not be restricted to the Cox model. A simulation study showed that analysis using the reference relative time-scale and analysis using chronological age had very similar power to detect a significant risk factor and both were equally unbiased. Further, the analysis using the reference relative time-scale supported fully-parametric survival modelling and allowed percentile predictions and mortality curves to be constructed.ConclusionsThe reference relative time-scale was a viable alternative to chronological age, led to simplification of the modelling process and possessed the defined features of a good time-scale as defined in reliability theory. The reference relative time-scale has several interpretations and provides a unifying concept that links contemporary approaches in survival and reliability analysis to the traditional epidemiologic methods of Poisson regression and standardised mortality ratios. The community of practitioners has not previously made this connection.

A letter to the editor about the article "A model for environmental sex reversal in fish".

Dear Editor, We read with great interest the article by Dr. Hurley and colleagues (Hurley et al., 2004), “A model for environmental sex reversal in fish”, which appeared in the 227 (2004) volume of the Journal of Theoretical Biology.

460 Flares in patients with systemic lupus erythematosus

Background and aims Systemic lupus erythematosus (SLE) is characterised by relapses and remissions. This study describes the frequency, type and time to flare in a cohort of SLE patients. Methods SLE patients with one or more “A” or “B” BILAG2004 systems meeting flare criteria (items that were “new” or “worse”) and requiring an increase in immunosuppressive therapy were recruited from nine UK centres and assessed at baseline and monthly for nine months. Flares were defined as: severe (“A” flare/s irrespective of number of “B” flares), moderate (2 or more “B” flares without any “A” flares and mild (one “B” flare). Results Of the 100 patients, 94% were female, 61% white Caucasians, mean age (SD) was 40.7 years (12.7) and mean disease duration (SD) 9.3 years (8.1). A total of 195 flares occurred in 76 patients over 781 monthly assessments, giving a flare rate of 0.25/month. There were 37 severe flares (22 patients), 32 moderate flares (19 patients) and 126 mild flares (67 patients) [Table 1]. The median time to any “A” or “B” flare was 4 months (95% CI 2.7 to 5.3 months). Figure 1 shows the time to the first mild/moderate/severe flare (Curve 1), moderate/severe flare (Curve 2) and severe flare (Curve 3). Table 2 shows that severe and moderate flares tend to be in the system/s affected at baseline whereas mild flares are more likely to affect any system. Abstract 460 Table 1 Type and frequency of Flares. Abstract 460 Figure 1 Abstract 460 Table 2 BILAG2004 index disease activity system affected at baseline and at time of flare and concordance between the two by severity of flare (npat = number of patients, nflare = number of flare, nsystem = number of times system affected with flares, % = percentage of total number of times systems affected). Conclusions This real world cohort will share similarities with populations recruited to clinical studies so these results may inform future trial design.

Screening for aspiration risk associated with dysphagia in acute stroke

This is a protocol for a Cochrane Review (Diagnostic test accuracy). The objectives are as follows: To determine the diagnostic accuracy of bedside screening tools for detecting dysphagia, which is a predictor of aspiration, in people with acute stroke. To assess the influence of the following potential sources of heterogeneity. • Patient demographics (e.g. age, gender, % of males in study, median age of study by gender). • The time post-stroke that the study was conducted (from admission to 48 hours) to ensure only hyperacute and acute stroke dysphagia screening tools are identified. • Any significant change in the patient’s condition between the index and reference tests being performed. • The definition of dysphagia used by the study. • Level of training of nursing staff, both grade and training in the screening tool. • Low quality studies identified from the methodological quality checklist. • i) Type of the index test and ii) the threshold of the index test • Type of the reference test 1 Screening for aspiration risk associated with dysphagia in acute stroke (Protocol) Copyright