Response shift, recall bias and their effect on measuring change in health-related quality of life amongst older hospital patients

Background: Assessments of change in subjective patient reported outcomes such as health-related quality of life (HRQoL) are a key component of many clinical and research evaluations. However, conventional longitudinal evaluation of change may not agree with patient perceived change if patients' understanding of the subjective construct under evaluation changes over time (response shift) or if patients' have inaccurate recollection (recall bias). This study examined whether older adults' perception of change is in agreement with conventional longitudinal evaluation of change in their HRQoL over the duration of their hospital stay. It also investigated this level of agreement after adjusting patient perceived change for recall bias that patients may have experienced. Methods: A prospective longitudinal cohort design nested within a larger randomised controlled trial was implemented. 103 hospitalised older adults participated in this investigation at a tertiary hospital facility. The EQ-5D utility and Visual Analogue Scale (VAS) scores were used to evaluate HRQoL. Participants completed EQ-5D reports as soon as they were medically stable (within three days of admission) then again immediately prior to discharge. Three methods of change score calculation were used (conventional change, patient perceived change and patient perceived change adjusted for recall bias). Agreement was primarily investigated using intraclass correlation coefficients (ICC) and limits of agreement. Results: Overall 101 (98%) participants completed both admission and discharge assessments. The mean (SD) age was 73.3 (11.2). The median (IQR) length of stay was 38 (20-60) days. For agreement between conventional longitudinal change and patient perceived change: ICCs were 0.34 and 0.40 for EQ-5D utility and VAS respectively. For agreement between conventional longitudinal change and patient perceived change adjusted for recall bias: ICCs were 0.98 and 0.90 respectively. Discrepancy between conventional longitudinal change and patient perceived change was considered clinically meaningful for 84 (83.2%) of participants, after adjusting for recall bias this reduced to 8 (7.9%). Conclusions: Agreement between conventional change and patient perceived change was not strong. A large proportion of this disagreement could be attributed to recall bias. To overcome the invalidating effect of response shift (on conventional change) and recall bias (on patient perceived change) a method of adjusting patient perceived change for recall bias has been described.

Evidence of disagreement between patient-perceived change and conventional longitudinal evaluation of change in health-related quality of life among older adults

Objective: To identify agreement levels between conventional longitudinal evaluation of change (post–pre) and patient-perceived change (post–then test) in health-related quality of life. Design: A prospective cohort investigation with two assessment points (baseline and six-month follow-up) was implemented. Setting: Community rehabilitation setting. Subjects: Frail older adults accessing community-based rehabilitation services. Intervention: Nil as part of this investigation. Main measures: Conventional longitudinal change in health-related quality of life was considered the difference between standard EQ-5D assessments completed at baseline and follow-up. To evaluate patient-perceived change a ‘then test’ was also completed at the follow-up assessment. This required participants to report (from their current perspective) how they believe their health-related quality of life was at baseline (using the EQ-5D). Patient-perceived change was considered the difference between ‘then test’ and standard follow-up EQ-5D assessments. Results: The mean (SD) age of participants was 78.8 (7.3). Of the 70 participants 62 (89%) of data sets were complete and included in analysis. Agreement between conventional (post–pre) and patient-perceived (post–then test) change was low to moderate (EQ-5D utility intraclass correlation coefficient (ICC)¼0.41, EQ-5D visual analogue scale (VAS) ICC¼0.21). Neither approach inferred greater change than the other (utility P¼0.925, VAS P¼0.506). Mean (95% confidence interval (CI)) conventional change in EQ-5D utility and VAS were 0.140 (0.045,0.236) and 8.8 (3.3,14.3) respectively, while patient-perceived change was 0.147 (0.055,0.238) and 6.4 (1.7,11.1) respectively. Conclusions: Substantial disagreement exists between conventional longitudinal evaluation of change in health-related quality of life and patient-perceived change in health-related quality of life (as measured using a then test) within individuals.

Seeking a life in the literary position : the writing of Charmian Clift

An examination of the published and unpublished writing of Charmian Clift.

Change is life process

A paper presented at the Rockhampton Women's Business Network Breakfast on 6 October 2000. Breakfast presentations were to be sharing, reflective and a light start to the day.

Physical function and health-related quality of life of older adults undergoing hospital rehabilitation : how strong is the association?

The purpose of this research is to report preliminary empirical evidence regarding the association between common physical performance measures and health-related quality of life (HRQoL) of hospitalized older adults recovering from illness and injury. Frequently, these patients do not return to premorbid levels of independence and physical ability. Rehabilitation for this population often focuses on improving physical functioning and mobility with the intention of maximizing their HRQoL for discharge and thereafter. For this reason, longitudinal use of physical performance measures as an indicator of improvement in physical functioning (and thus HRQoL) is common. Although this is a logical approach, there have been mixed results from previous investigations into the association between common measures of physical function and HRQoL amongst other adult patient populations.1,2 There has been no previous investigation reporting the association between HRQoL and a variety of common physical performance measures in hospitalized older adults.

On location : the imagined private interior in public life

This paper reveals the interior landscapes of selected contemporary Australian films, such as The Caterpillar Wish and Bad Boy Bubby, to develop a number of thematic influences on the manner in which domestic and private lives are constructed through filmic imagination. The research uncovers the conditions that contribute to particular scenographic representations of the humble interiors that act as both backdrop and performer to subtle and often troubled narratives. Such readings are informed by the theoretical works of writer Gertrude Stein, among others, who explore the relationships between the scenographic third dimension and the fourth dimensional performance in the representation of narrative space. A further theoretical thread lies in Giuliana Bruno’s work on the tension between private and public filmic space, which is explored through the public outing of intensely private spaces generated through narratives framed by the specificities of found interiors. Beyond the interrogation of qualities of imagined filmic space is the condition whereby locations, once transformed by the event of movie making are consequently forever revised. These altered conditions subsequently reinvest the lives of those who return to the location with layered narratives of occupation. Situationally, the now reconverted interior performs as contributor to subsequent private inhabitation, even if only as imagined space. The possibility here is that the qualities of the original may be superimposed and recontextualised to invest post-produced interiors with the qualities of the other space as imagined. This reading of film space explores new theoretical design scenarios for imagined and everyday interior landscapes.

Bushfire sustainability : Strategies for reconciling bushfire and biodiversity with daily life

This exhibition and catalogue provides a visual record of student work exhibited at the Australian Institute of Architects offices in Brisbane from November 15 to 29, 2010. The exhibition features the final design outcomes of the inaugural Bushfire Sustainability unit conducted at QUT in semester two, 2010. The core objective of this unit was to develop our students’ skills in collaborative practice in design, research and presentation. The theme of ‘bushfire sustainability’ was chosen because living sustainably in bushfire prone landscapes presents a number of problems, the nature of which might only be resolved via multidisciplinary collaboration among the design disciplines. The students involved represent the disciplines of Interior Design, Landscape Architecture, Industrial Design, Architecture and Sustainability – all from within the School of Design at QUT. 55 students, mostly in their third year of study, worked in teams of five (one from each discipline) to design one of a number of homes in highly bushfire prone sites in either Western Australia or SE Queensland. This year level and the interdisciplinary mix are perhaps the best placed to resolve these problems: being unrestrained from the burdens of professional practice and technical overload they retain the potential for innovative, lateral thinking across the range of spatial scales and philosophical perspectives associated with inhabitation of bushfire prone landscapes. It is envisaged that, through the ‘vehicle’ of this design research, that the students’ work will contribute to understandings of how creative design disciplines might respond to this significant national problem, which hitherto has been attended to primarily by engineering and the sciences.

Whole life cycle costing for Malaysia residential property development : the cultural environment

As knowledge of the residential development costing impact on resource and budgeting use increase, developers are moving towards more sustainable solution by implementing whole life cycle costing. Property management requires an understanding of infrastructure management, service life planning and quality management. Today, people are beginning to realize that effective property management in high-rise residential property can sustain the property value and maintain high returns on their investment. The continuous growth of high-rise residential properties indicates that there is a need for an effective property management system to provide a sustainable high-rise residential property development. For such reasons, this paper attempts to study the culture that have been applied due the residential property development in Malaysia as to improve to the best and sustainable practice in providing the best cost effectiveness management system in residential property development.

Luxury fashion: The role of innovation as a key contributing factor in the development of luxury fashion goods and sustainable fashion design

Luxury is a quality that is difficult to define as the historical concept of luxury appears to be both dynamic and culturally specific. The everyday definition explains a ‘luxury’ in relation to a necessity: a luxury (product or service) is defined as something that consumers want rather than need. However, the growth of global markets has seen a boom in what are now referred to as ‘luxury brands’. This branding of products as luxury has resulted in a change in the way consumers understand luxury goods and services. In their attempts to characterize a luxury brand, Fionda & Moore in their article “The anatomy of a Luxury Brand” summarize a range of critical conditions that are in addition to product branding “... including product and design attributes of quality, craftsmanship and innovative, creative and unique products” (Fionda & Moore, 2009). For the purposes of discussing fashion design however, quality and craftsmanship are inseparable while creativity and innovation exist under different conditions. The terms ‘creative’ and ‘innovative’ are often used inter-changeably and are connected with most descriptions of the design process, defining ‘design’ and ‘fashion’ in many cases. Christian Marxt and Fredrik Hacklin identify this condition in their paper “Design, product development, innovation: all the same in the end?”(Marxt & Hacklin, 2005) and suggest that design communities should be aware that the distinction between these terms, whilst once quite definitive, is becoming narrow to a point where they will mean the same thing. In relation to theory building in the discipline this could pose significant problems. Brett Richards (2003) identifies innovation as different from creativity in that innovation aims to transform and implement rather than simply explore and invent. Considering this distinction, in particular relation to luxury branding, may affect the way in which design can contribute to a change in the way luxury fashion goods might be perceived in a polarised fashion market, namely suggesting that ‘luxury’ is what consumers need rather than the ‘pile it high, sell it cheap’ fashion that the current market dynamic would indicate they want. This paper attempts to explore the role of innovation as a key contributing factor in luxury concepts, in particular the relationship between innovation and creativity, the conditions which enable innovation, the role of craftsmanship in innovation and design innovation in relation to luxury fashion products. An argument is presented that technological innovation can be demonstrated as a common factor in the development of luxury fashion product and that the connection between designer and maker will play an important role in the development of luxury fashion goods for a sustainable fashion industry.

Exploring the relationship between grandparents and their grandchild who has a disability

This thesis reports on the findings of a study which sought to explore the relationship between grandparents and their grandchild who has a disability. In contrast to previous studies, it presents the grandparents’ perspective on the roles and relationships they maintain within their families and adopts a qualitative approach to identify the meanings, symbols and beliefs grandparents attribute to their experiences. Grandparents have played and continue to play an important role in the lives of many families, contributing both symbolic and instrumental support to their grandchildren. Changing life expectancy for older people has meant that many more grandparents and grandchildren now have the opportunity to participate in meaningful interactions and to develop strong relationships. In the future, this will be true for great grandparents and in some cases great great grandparents as well. This presents a number of challenges to all concerned as family members negotiate the often complex arena of family life in the 21st Century. Realizing that a grandchild has a disability adds another degree of complexity to the negotiation of roles and responsibilities of grandparents within families. By focussing on grandparents experiences when their grandchild has a disability, this research both explores a knowledge gap in the current literature and more practicably, will inform both grandparents and their families as they negotiate these challenges. This research makes a significant contribution to knowledge in this area by exploring grandparents’ views on the differences in the relationship they have with their typically developing grandchildren and their grandchild with a disability; the impact having a grandchild with a disability had had on their grandparent identity and whether it impacted on quality of life. As well as reporting on the aims of the study, the papers presented in this thesis report on the key topics and themes identified in the analysis of the transcribed interviews conducted with 22 grandparents whose grandchild has a disability. Article 1 presents an overview of the literature which informs current knowledge in relation to grandparents, presenting a historical and theoretical perspective. Additionally, it presents previous literature which discusses the roles and styles grandparents adopt thus providing a framework which is later used to examine the roles and styles adopted by the grandparents in the study. Article 2 addresses the emotional responses grandparents in the study experienced as they grandparented a child with a disability. Comparing these emotions to that of a roller coaster ride, ranging from absolute sadness and grief to pride and delight, these findings highlight their unique experiences and will be reassuring for other grandparents who experience similar emotional responses. Article 3 discusses from the grandparents’ perspective, how having a grandchild with a disability has impacted on their family. Whilst reporting on the day to day challenges of competing family commitments and conflict, a number of grandparents in this study also commented that the experience had made them closer as a family and that there had been significant changes in how some individual family members now viewed people with disability. Article 4 explores the impact having a grandchild with a disability may have on the grandparents’ sense of identity and enactment of the grandparent role, utilising Neugarten and Weinstein’s (1964) classic grandparenting styles and Kornhaber’s (1996) concepts of latent and functional grandparent identity as a basis for comparison. It provides important insight into grandparenting identity when a child has a disability, suggesting that the grandparenting experience and role enactment may be universal with only the context and delivery varying. In summary, this thesis confirms the valuable role grandparents play in the lives of grandchildren who have a disability and their families. It identifies a number of implications and makes recommendations for future research and practice.

The relative impact of work-related stress, life stress and driving environment stress on driving outcomes

Previous research has shown the association between stress and crash involvement. The impact of stress on road safety may also be mediated by behaviours including cognitive lapses, errors, and intentional traffic violations. This study aimed to provide a further understanding of the impact that stress from different sources may have upon driving behaviour and road safety. It is asserted that both stress extraneous to the driving environment and stress directly elicited by driving must be considered part of a dynamic system that may have a negative impact on driving behaviours. Two hundred and forty-seven public sector employees from Queensland, Australia, completed self-report measures examining demographics, subjective work-related stress, daily hassles, and aspects of general mental health. Additionally, the Driver Behaviour Questionnaire (DBQ) and the Driver Stress Inventory (DSI) were administered. All participants drove for work purposes regularly, however the study did not specifically focus on full-time professional drivers. Confirmatory factor analysis of the predictor variables revealed three factors: DSI negative affect; DSI risk taking; and extraneous influences (daily hassles, work-related stress, and general mental health). Moderate intercorrelations were found between each of these factors confirming the ‘spillover’ effect. That is, driver stress is reciprocally related to stress in other domains including work and domestic life. Structural equation modelling (SEM) showed that the DSI negative affect factor influenced both lapses and errors, whereas the DSI risk-taking factor was the strongest influence on violations. The SEMs also confirmed that daily hassles extraneous to the driving environment may influence DBQ lapses and violations independently. Accordingly, interventions may be developed to increase driver awareness of the dangers of excessive emotional responses to both driving events and daily hassles (e.g. driving fast to ‘blow off steam’ after an argument). They may also train more effective strategies for self-regulation of emotion and coping when encountering stressful situations on the road.

A national roll out of an insufficiently evaluated practice : how evidence based are our end-of-life care policies?

There has been increasing international efforts to ensure that health care policies are evidence based. One area where there is a lack of ‘effectiveness’ evidence is in the use of end-of-life care pathways (EOLCP) (1). Despite the lack of evidence supporting the efficacy of the EOCLP, their use has been endorsed in the recent national palliative care strategy document in the UK (2). In addition, a publication endorsed by the Australian Government (titled: Supporting Australians to live well at the End of Life- National Palliative Care Strategy 2010) (3), recommended a national roll out of EOLCP across all sectors (primary, acute and aged care) in Australia. According to this document, it is a measure of “appropriateness” and “effectiveness” for promoting quality end-of-life care.

Media skills for daily life : designing a journalism programme for graduates of all disciplines

This article in the journalism education field reports on the construction of a new subject as part of a postgraduate coursework degree. The subject, or unit1 will offer both Journalism students and other students an intro¬ductory experience of creating media, using common ‘new media’ tools, with exercises that will model the learning of communication principles through practice. It has been named ‘Fundamental Media Skills for the Workplace’. The conceptualisation and teaching of it will be characteristic of the Journalism academic discipline that uses the ‘inside perspective’—understanding mass media by observing from within. Proposers for the unit within the Journalism discipline have sought to extend the common teaching approach, based on training to produce start-ready recruits for media jobs, backed by a study of contexts, e.g. journalistic ethics, or media audiences. In this proposal, students would then examine the process to elicit additional knowledge about their learning. The article draws on literature of journalism and its pedagogy, and on communication generally. It also documents a ‘community of practice’ exercise conducted among practitioners as teachers for the subject, developing exercises and models of media work. A preliminary conclusion from that exercise is that it has taken a step towards enhancing skills-based learning for media work.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 1 (New South Wales)

This is the first article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in New South Wales. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in New South Wales.