Validation of a parent-proxy quality of life questionnaire for paediatric chronic cough (PC-QOL)

Background Quality of life (QOL) measures are an important patient-relevant outcome measure for clinical studies. Currently there is no fully validated cough-specific QOL measure for paediatrics. The objective of this study was to validate a cough-specific QOL questionnaire for paediatric use. Method 43 children (28 males, 15 females; median age 29 months, IQR 20–41 months) newly referred for chronic cough participated. One parent of each child completed the 27-item Parent Cough-Specific QOL questionnaire (PC-QOL), and the generic child (Pediatric QOL Inventory 4.0 (PedsQL)) and parent QOL questionnaires (SF-12) and two cough-related measures (visual analogue score and verbal category descriptive score) on two occasions separated by 2–3 weeks. Cough counts were also objectively measured on both occasions. Results Internal consistency for both the domains and total PC-QOL at both test times was excellent (Cronbach alpha range 0.70–0.97). Evidence for repeatability and criterion validity was established, with significant correlations over time and significant relationships with the cough measures. The PC-QOL was sensitive to change across the test times and these changes were significantly related to changes in cough measures (PC-QOL with: verbal category descriptive score, rs=−0.37, p=0.016; visual analogue score, rs=−0.47, p=0.003). Significant correlations of the difference scores for the social domain of the PC-QOL and the domain and total scores of the PedsQL were also noted (rs=0.46, p=0.034). Conclusion The PC-QOL is a reliable and valid outcome measure that assesses QOL related to childhood cough at a given time point and measures changes in cough-specific QOL over time.

Sustainability outcomes of infrastructure sustainability rating schemes for road projects

The construction and operation of infrastructure assets can have significant impact on society and the region. Using a sustainability assessment framework can be an effective means to build sustainability aspects into the design, construction and operation of infrastructure assets. The conventional evaluation processes and procedures for infrastructure projects do not necessarily measure the qualitative/quantitative effectiveness of all aspects of sustainability: environment, social wellbeing and economy. As a result, a few infrastructure sustainability rating schemes have been developed with a view to assess the level of sustainability attained in the infrastructure projects. These include: Infrastructure Sustainability (Australia); CEEQUAL (UK); and Envision (USA). In addition, road sector specific sustainability rating schemes such as Greenroads (USA) and Invest (Australia) have also been developed. These schemes address several aspects of sustainability with varying emphasis (weightings) on areas such as: use of resources; emission, pollution and waste; ecology; people and place; management and governance; and innovation. The attainment of sustainability of an infrastructure project depends largely on addressing the whole-of-life environmental issues. This study has analysed the rating schemes’ coverage of different environmental components for the road infrastructure under the five phases of a project: material, construction, use, maintenance and end-of-life. This is based on a comprehensive life cycle assessment (LCA) system boundary. The findings indicate that there is a need for the schemes to consider key (high impact) life cycle environmental components such as traffic congestion during construction, rolling resistance due to surface roughness and structural stiffness of the pavement, albedo, lighting, and end-of-life management (recycling) to deliver sustainable road projects.

The once-and-for-all withdrawal of the Liverpool Care Pathway in the UK : what are the implications for Australia?

This Perspective reflects on the withdrawal of the Liverpool Care Pathway in the UK, and its implications for Australia. Integrated care pathways are documents which outline the essential steps of multidisciplinary care in addressing a specific clinical problem. They can be used to introduce best clinical practice, to ensure that the most appropriate management occurs at the most appropriate time and that it is provided by the most appropriate health professional. By providing clear instructions, decision support and a framework for clinician-patient interactions, care pathways guide the systematic provision of best evidence-based care. The Liverpool Care Pathway (LCP) is an example of an integrated care pathway, designed in the 1990s to guide care for people with cancer who are in their last days of life and are expected to die in hospital. This pathway evolved out of a recognised local need to better support non-specialist palliative care providers’ care for patients dying of cancer within their inpatient units. Historically, despite the large number of people in acute care settings whose treatment intent is palliative, dying patients receiving general hospital acute care tended to lack sufficient attention from senior medical staff and nursing staff. The quality of end-of-life care was considered inadequate, therefore much could be learned from the way patients were cared for by palliative care services. The LCP was a strategy developed to improve end-of-life care in cancer patients and was based on the care received by those dying in the palliative care setting.

Key facilitators and barriers to quality of life in residential aged care : the role of design

Australia is undergoing a critical demographic transition: the population is ageing. By 2050, one in four Australians will be older than 65 years and by 2031, the number of older Australians requiring residential aged care will increase 63%, to 1.4 million (ABS, 2005). In anticipation of this global demographic transition, the World Health Organisation has advocated ‘active ageing’, identifying health, participation and security as the three key factors that enhance quality of life for people as they age (WHO, 2002). While there is considerable discussion and acceptance of active ageing principles, little is known about the experience of ‘active ageing’ for older Australians who live in Residential Aged Care Facilities (RACF). This research addresses this knowledge gap by exploring the key facilitators and barriers to quality of life and active ageing in aged care from the perspective of aged care residents (n=12). To do this, the project documented the initial expectations and daily life experience of new residents living in a RACF over a one-year period. Combined with in-depth interviews and surveys, the project utilised Photovoice methodology - where participants used photography to record their lived experiences. The initial findings suggest satisfaction with living in aged care centers around five key themes; resident’s mental attitude to living in aged care, forming positive peer and staff relationships, self-determination and maintaining independence, opportunities to participate in interesting activities, and living in a safe and comfortable physical environment. This paper reports on the last of these five key themes, focusing on the role of design in facilitating quality of life, specifically: “living within these walls” – safety, comfort and the physical environment.

1000 voices : an online public collection of life stories

1000 voices is an international web-based platform for gathering and displaying more than 1000 life stories about the lived experience of people with disability. The site contains life stories told by people with disability that are presented in multiple media and formats, including text, audio, video, graphics and visual art...

“Best interests” and withholding and withdrawing life-sustaining treatment from an adult who lacks capacity in the parens patriae jurisdiction

Disputes about withholding and withdrawing life-sustaining treatment are increasingly coming before Australian Supreme Courts. Such cases are generally heard in the parens patriae jurisdiction where the test applied is what is in the patient’s “best interests”. However, the application of the “best interests” test, and its meaning, remains unclear in this context. To shed light on this emerging body of jurisprudence, this article analyses the Australian superior court decisions that consider an adult’s best interests in the context of decisions about life-sustaining treatment. We identify a number of themes from the current body of cases and consider how these themes may guide future decision-making. After then considering the law in the United Kingdom, we suggest an approach for assessing best interests that could be adopted by Australian Supreme Courts. We argue that the suggested approach will lead to a more structured and systematic decision-making process that better promotes the best interests of the patient.

BIM for sustainable whole-of-life transport infrastructure asset management

The US National Institute of Standards and Technology (NIST) showed that, in 2004, owners and operations managers bore two thirds of the total industry cost burden from inadequate interoperability in construction projects from inception to operation, amounting to USD10.6 billion. Building Information Modelling (BIM) and similar tools were identified by Engineers Australia in 2005 as potential instruments to significantly reduce this sum, which in Australia could amount to total industry-wide cost burden of AUD12 billion. Public sector road authorities in Australia have a key responsibility in driving initiatives to reduce greenhouse gas emissions from the construction and operations of transport infrastructure. However, as previous research has shown the Environmental Impact Assessment process, typically used for project approvals and permitting based on project designs available at the consent stage, lacks Key Performance Indicators (KPIs) that include long-term impact factors and transfer of information throughout the project life cycle. In the building construction industry, BIM is widely used to model sustainability KPIs such as energy consumption, and integrated with facility management systems. This paper proposes that a similar use of BIM in early design phases of transport infrastructure could provide: (i) productivity gains through improved interoperability and documentation; (ii) the opportunity to carry out detailed cost-benefit analyses leading to significant operational cost savings; (iii) coordinated planning of street and highway lighting with other energy and environmental considerations; iv) measurable KPIs that include long-term impact factors which are transferable throughout the project life cycle; and (v) the opportunity for integrating design documentation with sustainability whole-of-life targets.

Withholding and withdrawing life-sustaining medical treatment

• At common law, a competent adult can refuse life-sustaining medical treatment, either contemporaneously or through an advance directive which will operate at a later time when the adult’s capacity is lost. • Legislation in most Australian jurisdictions also provides for a competent adult to complete an advance directive that refuses life-sustaining medical treatment. • At common law, a court exercising its parens patriae jurisdiction can consent to, or authorise, the withdrawal or withholding of life-sustaining medical treatment from an adult or child who lacks capacity if that is in the best interests of the person. A court may also declare that the withholding or withdrawal of treatment is lawful. • Guardianship legislation in all jurisdictions allows a substitute decision-maker, in an appropriate case, to refuse life-sustaining medical treatment for an adult who lacks capacity. • In terms of children, a parent may refuse life-sustaining medical treatment for his or her child if it is in the child’s best interests. • While a refusal of life-sustaining medical treatment by a competent child may be valid, this decision can be overturned by a court. • At common law and generally under guardianship statutes, demand for futile treatment need not be complied with by doctors.

Advance Care Planning in palliative care : a systematic literature review of the contextual factors influencing its uptake 2008-2012

Background: Advance Care Planning is an iterative process of discussion, decision-making and documentation about end-of-life care. Advance Care Planning is highly relevant in palliative care due to intersecting clinical needs. To enhance the implementation of Advance Care Planning, the contextual factors influencing its uptake need to be better understood. Aim: To identify the contextual factors influencing the uptake of Advance Care Planning in palliative care as published between January 2008 and December 2012. Methods: Databases were systematically searched for studies about Advance Care Planning in palliative care published between January 2008 and December 2012. This yielded 27 eligible studies, which were appraised using National Institute of Health and Care Excellence Quality Appraisal Checklists. Iterative thematic synthesis was used to group results. Results: Factors associated with greater uptake included older age, a college degree, a diagnosis of cancer, greater functional impairment, being white, greater understanding of poor prognosis and receiving or working in specialist palliative care. Barriers included having non-malignant diagnoses, having dependent children, being African American, and uncertainty about Advance Care Planning and its legal status. Individuals’ previous illness experiences, preferences and attitudes also influenced their participation. Conclusion: Factors influencing the uptake of Advance Care Planning in palliative care are complex and multifaceted reflecting the diverse and often competing needs of patients, health professionals, legislature and health systems. Large population-based studies of palliative care patients are required to develop the sound theoretical and empirical foundation needed to improve uptake of Advance Care Planning in this setting.

Physical activity, walking and quality of life in women with depressive symptoms

Background Physical activity (PA) has a positive association with health-related quality of life (HRQL) in the general population. The association between PA and HRQL in those with poor mental health is less clear. Purpose To examine the concurrent and prospective dose-response relationships between total physical activity (TPA) and walking only with HRQL in women aged 50-55 with depressive symptoms in 2001. Methods Participants were 1904 women born in 1946-1951 who completed mailed surveys for the Australian Longitudinal Study on Women's Health in 2001, 2004, 2007 and 2010 and who, in 2001, reported depressive symptoms. At each time point, they reported their weekly minutes of walking, moderate PA, and vigorous PA. A summary TPA score was created that accounted for differences in energy expenditure among the three PA types. Mixed models were used to examine associations between TPA and HRQL (SF-36 component and subscale scores) and between walking and HRQL, for women who reported walking as their only PA. Analyses were conducted in 2013-2014. Results Concurrently, higher levels of TPA and walking were associated with better HRQL (p<0.05). The strongest associations were found for physical functioning, vitality, and social functioning subscales. In prospective models, associations were attenuated, yet compared with women doing no TPA or walking, women doing “sufficient” TPA or walking had significantly better HRQL over time for most SF-36 scales. Conclusions This study extends previous work by demonstrating trends between both TPA and walking and HRQL in women reporting depressive symptoms.

Age, physical inactivity, obesity, health conditions, and health-related quality of life among patients receiving conservative management for musculoskeletal disorders

Background Musculoskeletal conditions and insufficient physical activity have substantial personal and economic costs among contemporary aging societies. This study examined the age distribution, comorbid health conditions, body mass index (BMI), self-reported physical activity levels, and health-related quality of life of patients accessing ambulatory hospital clinics for musculoskeletal disorders. The study also investigated whether comorbidity, BMI, and self-reported physical activity were associated with patients’ health-related quality of life after adjusting for age as a potential confounder. Methods A cross-sectional survey was undertaken in three ambulatory hospital clinics for musculoskeletal disorders. Participants (n=224) reported their reason for referral, age, comorbid health conditions, BMI, physical activity levels (Active Australia Survey), and health-related quality of life (EQ-5D). Descriptive statistics and linear modeling were used to examine the associations between age, comorbidity, BMI, intensity and duration of physical activity, and health-related quality of life. Results The majority of patients (n=115, 51.3%) reported two or more comorbidities. In addition to other musculoskeletal conditions, common comorbidities included depression (n=41, 18.3%), hypertension (n=40, 17.9%), and diabetes (n=39, 17.4%). Approximately one-half of participants (n=110, 49.1%) self-reported insufficient physical activity to meet minimum recommended guidelines and 150 (67.0%) were overweight (n=56, 23.2%), obese (n=64, 28.6%), severely obese (n=16, 7.1%), or very severely obese (n=14, 6.3%), with a higher proportion of older patients affected. A generalized linear model indicated that, after adjusting for age, self-reported physical activity was positively associated (z=4.22, P<0.001), and comorbidities were negatively associated (z=-2.67, P<0.01) with patients’ health-related quality of life. Conclusion Older patients were more frequently affected by undesirable clinical attributes of comorbidity, obesity, and physical inactivity. However, findings from this investigation are compelling for the care of patients of all ages. Potential integration of physical activity behavior change or other effective lifestyle interventions into models of care for patients with musculoskeletal disorders is worthy of further investigation.