Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective

Although Huntington's disease (HD) is a neurodegenerative disease characterized by motor, cognitive and behavioural disturbances, there has been little empirical data examining what patients are most concerned about throughout the different stages of disease, which can span many years. Semi-structured face-to-face interviews were individually conducted with 31 people living with different stages of Huntington's, from pre-clinical gene carriers to advanced stage. We examined how often participants raised issues and concerns regarding the impact of Huntington's on everyday life. The Physical/functional theme hardly featured pre-clinically, but was strongly present from Stage 1, rose steadily and peaked at Stage 5. There were no significant changes between stages for the Emotional, Social, and Self themes that all featured across all stages, indicating that these issues were not raised more frequently over the course of the disease. Likewise, the more rarely mentioned Financial and Legal themes also remained similar across stages. However, the Cognitive theme only featured between Stages 1 and 4, and hardly at all pre-clinically and at Stage 5. These findings provide insight into patients' important and unique perspective and have implications for the management and development of interventions across the spectrum of HD stages.

Health-related quality of life in Huntington’s Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington’s Disease health-related quality of life questionnaire (HDQoL)

Huntington’s disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patient–proxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patient–proxy pairs completed the Huntington’s disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxy–patient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxies’ ratings were at a similar level to patients’ self-ratings on an overall Summary Score and on most of the six Specific Scales of the HDQoL. On the Specific Hopes and Worries Scale, proxies on average rated HrQoL as better than patients’ self-ratings, while on both the Specific Cognitive Scale and Specific Physical and Functional Scale proxies tended to rate HrQoL more poorly than patients themselves. The patient’s disease stage and mental wellbeing (SF-12 Mental Component scale) were the two factors that primarily affected proxy assessment. Proxy scores were strongly correlated with patients’ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patient–proxy correlation was lower for patients at moderate stages of HD compared to patients at early and advanced stages. The proxy report version of the HDQoL is a useful complementary tool to self-assessment, and a promising alternative when individual patients with advanced HD are unable to self-report.

Shaping children’s mobilities: expectations of gendered parenting in the English rural idyll

This paper explores the impact of local parenting practices and children's everyday use of public space within two villages in the rural South West of England, an issue that has been underexplored in recent research. Drawing upon the concept of hybridity, it explores the interplay between the social, natural and material in shaping local cultures of rural parenting. The paper begins by drawing upon recent research on parenting in the global North, the gendering of rural space and hybridity to show how these bodies of work can be interlinked to better understand rural parenting practices and norms. Through empirical research that focused on the relationships between gendered parenting strategies, idealised notions of rural motherhood and materiality, the paper explores the diverse ways in which a group of working and middle-class mothers construct and define ideas about their children's lives and mobilities. Whilst dominant discourses of rurality focus upon the idyll, and gendered identities of rural women still remain within the domestic sphere, so we examine how these deeply embedded notions of ‘normality’ can be powerful social tools in rural villages, mobilised through discourses of materiality and anxiety. In our conclusions, we argue that the hybrid integration of the material and social provides a useful framework for understanding the everyday geographies of rural parenting.

Capital market expectations and the London office market

The analysis of office market dynamics has generally concentrated on the impact of underlying fundamental demand and supply variables. This paper takes a slightly different approach to many previous examinations of rental dynamics. Within a Vector-Error-Correction framework the empirical analysis concentrates upon the impact of economic and financial variables on rents in the City of London and West End of London office markets. The impulse response and variance decomposition reveal that while lagged rental values and key demand drivers play a highly important role in the dynamics of rents, financial variables are also influential. Stock market performance not only influences the City of London market but also the West End, whilst the default spread plays an important role in recent years. It is argued that both series incorporate expectations about future economic performance and that this is the basis of their influence upon rental values.

General care of the older cancer patient.

With increasing age, there are greater numbers of older people who will be diagnosed with cancer. It must be remembered that such individuals have increased frailty and have a number of geriatric syndromes and conditions particularly pertinent to older age, including incontinence, poor cognition and impaired nutrition. It is often difficult to define the effects of cancer and its treatment or complications, and separate these from the effects of normal ageing and geriatric syndromes. The documentation of poor nutrition and its management must combine knowledge from both geriatric medicine and oncology. Nutrition serves to identify key healthcare professionals who are all essential in any patient at risk or suffering from malnutrition. Incontinence must be actively sought, its cause identified and efforts made to either 'cure' it or, in certain circumstances, 'manage' it. Older patients with cancer are cared for predominantly by older relations and informal care mechanisms and special consideration of their physical and practical needs are paramount. In this area, nurses, doctors, therapists and social workers should work to identify formal and informal mechanisms to support particularly the older carer.

Treatment of the elderly colorectal cancer patient: SIOG expert recommendations.

Colorectal cancer (CRC) is one of the commonest malignancies of Western countries, with approximately half the incidence occurring in patients >70 years of age. Elderly CRC patients, however, are understaged, undertreated and underrepresented in clinical trials. The International Society of Geriatric Oncology created a task force with a view to assessing the potential for developing guidelines for the treatment of elderly (geriatric) CRC patients. A review of the evidence presented by the task force members confirmed the paucity of clinical trial data in elderly people and the lack of evidence-based guidelines. However, recommendations have been proposed on the basis of the available data and on the emerging evidence that treatment outcomes for fit, elderly CRC patients can be similar to those of younger patients. It is hoped that these will pave the way for formal treatment guidelines based upon solid scientific evidence in the future.

Effect of patient age on management decisions in breast cancer: consensus from a national consultation

This qualitative study investigated the attitudes, perceptions, and practices of breast cancer specialists with reference to the effect of patient age on management decisions in breast cancer, and attempted to identify national consensus on this issue. One hundred thirty-three relevant specialists, including 75 surgeons and 43 oncologists, participated in a virtual consultation using e-mailed questionnaires and open-ended discussion documents, culminating in the development of proposed consensus statements sent to participants for validation. A strong consensus was seen in favor of incorporating minimum standards of diagnostic services, treatment, and care for older patients with breast cancer into relevant national guidance, endorsed by professional bodies. Similarly, an overwhelming majority of participants agreed that simple, evidence-based protocols or guidelines on standardizing assessment of biological and chronological age should be produced by the National Institute for Health and Clinical Excellence and the Scottish Medicines Consortium, developed in collaboration with specialist oncogeriatricians, and endorsed by professional bodies. A further recommendation that all breast cancer patient treatment and diagnostic procedures be undertaken in light of up-to-date, relevant scientific data met with majority support. This study was successful in gauging national specialist opinion regarding the effect of patient age on management decisions in breast cancer in the U.K.

System dynamics mapping of acute patient flows

Department of Health staff wished to use systems modelling to discuss acute patient flows with groups of NHS staff. The aim was to assess the usefulness of system dynamics (SD) in a healthcare context and to elicit proposals concerning ways of improving patient experience. Since time restrictions excluded simulation modelling, a hybrid approach using stock/flow symbols from SD was created. Initial interviews and hospital site visits generated a series of stock/flow maps. A ‘Conceptual Framework’ was then created to introduce the mapping symbols and to generate a series of questions about different patient paths and what might speed or slow patient flows. These materials formed the centre of three workshops for NHS staff. The participants were able to propose ideas for improving patient flows and the elicited data was subsequently employed to create a finalized suite of maps of a general acute hospital. The maps and ideas were communicated back to the Department of Health and subsequently assisted the work of the Modernization Agency.

Are clinical documents optimised for patient safety? A critical analysis of patient safety outcomes using the EDA error model

Iatrogenic errors and patient safety in clinical processes are an increasing concern. The quality of process information in hardcopy or electronic form can heavily influence clinical behaviour and decision making errors. Little work has been undertaken to assess the safety impact of clinical process planning documents guiding the clinical actions and decisions. This paper investigates the clinical process documents used in elective surgery and their impact on latent and active clinical errors. Eight clinicians from a large health trust underwent extensive semi- structured interviews to understand their use of clinical documents, and their perceived impact on errors and patient safety. Samples of the key types of document used were analysed. Theories of latent organisational and active errors from the literature were combined with the EDA semiotics model of behaviour and decision making to propose the EDA Error Model. This model enabled us to identify perceptual, evaluation, knowledge and action error types and approaches to reducing their causes. The EDA error model was then used to analyse sample documents and identify error sources and controls. Types of knowledge artefact structures used in the documents were identified and assessed in terms of safety impact. This approach was combined with analysis of the questionnaire findings using existing error knowledge from the literature. The results identified a number of document and knowledge artefact issues that give rise to latent and active errors and also issues concerning medical culture and teamwork together with recommendations for further work.

Testing the expectations theory of the term structure in threshold models

We test the expectations theory of the term structure of U.S. interest rates in nonlinear systems. These models allow the response of the change in short rates to past values of the spread to depend upon the level of the spread. The nonlinear system is tested against a linear system, and the results of testing the expectations theory in both models are contrasted. We find that the results of tests of the implications of the expectations theory depend on the size and sign of the spread. The long maturity spread predicts future changes of the short rate only when it is high.

US inflation expectations and heterogeneous loss functions, 1968-2010

Recent literature has suggested that macroeconomic forecasters may have asymmetric loss functions, and that there may be heterogeneity across forecasters in the degree to which they weigh under- and over-predictions. Using an individual-level analysis that exploits the Survey of Professional Forecasters respondents’ histogram forecasts, we find little evidence of asymmetric loss for the inflation forecasters

A conceptual framework of patient satisfaction with a pharmacy adherence service

Background Patients do not adhere to their medicines for a host of reasons which can include their underlying beliefs as well as the quality of their interactions with healthcare professionals. One way of measuring the outcome of pharmacy adherence services is to assess patient satisfaction but no questionnaire exists that truly captures patients' experiences with these relatively new services. Objective Our objective was to develop a conceptual framework specific to patient satisfaction with a community pharmacy adherence service based on criteria used by patients themselves. Setting The study was based in community pharmacies in one large geographical area of the UK (Surrey). All the work was conducted between October 2008 and September 2010. Methods This study involved qualitative non-participant observation and semi-structured interviewing. We observed the recruitment of patients to the Medicines Use Review (MUR) service and also actual MUR consultations (7). We also interviewed patients (15). Data collection continued until no new themes were identified during analysis. We analysed interviews to firstly create a comprehensive account of themes which had significance within the transcripts, then created sub-themes within super-ordinate categories. We used a structure-process-outcome approach to develop a conceptual framework relating to patient satisfaction with the MUR. Favourable ethical opinion for this study was received from the NHS Surrey Research Ethics Committee on 2nd June 2008. Results Five super-ordinate themes linked to patient satisfaction with the MUR service were identified, including relationships with healthcare providers; attitudes towards healthcare providers; patients' experience of health, healthcare and medicines; patients' views of the MUR service; the logistics of the MUR service. In the conceptual framework, structure was conceptualised as existing relationships, environment, and time; process was conceptualised as related to recruitment and consultation stages; and outcome as two concepts of immediate patient outcomes and satisfaction on reflection. Conclusion We identified and highlighted factors that can influence patient satisfaction with the MUR service and this led to the development of a conceptual framework of patient satisfaction with the MUR service. This can form the basis for developing a questionnaire for measuring patient satisfaction with this and similar pharmacy adherence services. Impact of findings on practice * Pharmacists and researchers can access the relevant ideas presented here in relation to patient satisfaction with pharmacy adherence services. * Researcher can use the conceptual framework as a basis for measuring the quality of pharmacy adherence services. * Community pharmacists can improve the quality of healthcare they provide by realizing concepts relevant to patient satisfaction with adherence services.