The impact of pain on the quality of life of people with multiple sclerosis: A community survey

The purpose of this study was to examine the impact of pain on functioning across multiple quality of life (QOL) domains among individuals with multiple sclerosis (MS). A total of 219 people were recruited from a regional MS society membership database to serve as the community-based study sample. All participants completed a questionnaire containing items about their demographic and clinical characteristics, validated measures of QOL and MS-related disability, and a question on whether or not they had experienced clinically significant pain in the preceding 2 weeks. Respondents who reported pain then completed an in-person structured pain interview assessing pain characteristics (intensity, quality, location, extent, and duration). Comparisons between participants with and without MS-related pain demonstrated that pain prevalence and intensity were strongly correlated with QOL: physical health, psychological health, level of independence, and global QOL were more likely to be impaired among people with MS when pain was present, and the extent of impairment was associated with the intensity of pain. Moreover, these relationships remained significant even after statistically controlling for multiple demographic and clinical covariates associated with self-reported QOL. These findings suggest that for people with MS, pain is an important source of distress and disability beyond that caused by neurologic impairments.

The NOURISH randomised control trial : positive feeding practices and food preferences in early childhood - a primary prevention program for childhood obesity

Background Primary prevention of childhood overweight is an international priority. In Australia 20-25% of 2-8 year olds are already overweight. These children are at substantially increased the risk of becoming overweight adults, with attendant increased risk of morbidity and mortality. Early feeding practices determine infant exposure to food (type, amount, frequency) and include responses (eg coercion) to infant feeding behaviour (eg. food refusal). There is correlational evidence linking parenting style and early feeding practices to child eating behaviour and weight status. A focus on early feeding is consistent with the national focus on early childhood as the foundation for life-long health and well being. The NOURISH trial aims to implement and evaluate a community-based intervention to promote early feeding practices that will foster healthy food preferences and intake and preserve the innate capacity to self-regulate food intake in young children. Methods/Design This randomised controlled trial (RCT) aims to recruit 820 first-time mothers and their healthy term infants. A consecutive sample of eligible mothers will be approached postnatally at major maternity hospitals in Brisbane and Adelaide. Initial consent will be for re-contact for full enrolment when the infants are 4-7 months old. Individual mother- infant dyads will be randomised to usual care or the intervention. The intervention will provide anticipatory guidance via two modules of six fortnightly parent education and peer support group sessions, each followed by six months of regular maintenance contact. The modules will commence when the infants are aged 4-7 and 13-16 months to coincide with establishment of solid feeding, and autonomy and independence, respectively. Outcome measures will be assessed at baseline, with follow up at nine and 18 months. These will include infant intake (type and amount of foods), food preferences, feeding behaviour and growth and self-reported maternal feeding practices and parenting practices and efficacy. Covariates will include sociodemographics, infant feeding mode and temperament, maternal weight status and weight concern and child care exposure. Discussion Despite the strong rationale to focus on parents’ early feeding practices as a key determinant of child food preferences, intake and self-regulatory capacity, prospective longitudinal and intervention studies are rare. This trial will be amongst to provide Level II evidence regarding the impact of an intervention (commencing prior to age 12 months) on children’s eating patterns and behaviours. Trial Registration: ACTRN12608000056392

Measuring and supporting quality of life

It is widely acknowledged that “quality of life” (QoL) is an imprecise concept, which is difficult to define (Arnold, 1991; Ball et al., 2000; Bury & Holme, 1993; Byrne & MacLean, 1997; Guse & Masesar, 1999; McDowell & Newell, 1996). McDowell and Newell (1996) described the term as “intuitively familiar” (p.382), suggesting that everyone believes that they know what it means; while, in reality its meaning differs from person to person. Recent years, have seen steadily increasing interest in the study and measurement of QoL related to human services, which reflects greater importance being attached to accountability in its widest sense. Anecdotally, many care staff will indicate that ensuring good QoL for their clients is important to them, but how can we ascertain whether we are achieving positive QoL outcomes, and given the complexities of the concept and its measurement, how can we best incorporate QoL assessment into everyday practice? This chapter will explore the issues of QoL definition and measurement, particularly as they pertain to aged care. It will consider many measurement tool options, and provide advice on how to choose an appropriate instrument for your circumstances. Issues of quality of care and their relationship to QoL will also be considered, and the chapter will conclude with a discussion on the integration of QoL assessment into practice. Because residential aged care constitutes a living environment as well as a care environment, QoL is considered particularly pertinent in this context, and as such, it will provide much of the focus for the chapter

End-of-life decision making for older people

This chapter deals with the increasing issues surrounding end-of-life decision making. As the life trajectory for older people changes, the need for open discussion about their health problems and treatment becomes more critical. Acceptance of the ageing process itself is often not easy so the matter of a good death is even more distressing for some people to consider. The vignette provides an excellent discussion on the need for open dialogue with the older person and their families, whether they are acutely ill or have chronic health problems. How a person wishes to be treated when quality of life is not going to improve, no matter what interventions are put in place, seems essential for person-centred care. The issue of competency is one that must be determined before any decision is made by any person involved in care.

The relationship between clinical outcomes and quality of life for residents of aged care facilities

Objectives It is widely assumed improving care in residential facilities will improve quality of life (QoL), but little research has explored this relationship. The Clinical Care Indicators (CCI) Tool was developed to fill an existing gap in quality assessment within Australian residential aged care facilities and it was used to explore potential links between clinical outcomes and QoL. Design and Setting Clinical outcome and QoL data were collected within four residential facilities from the same aged care provider. Subjects Subjects were 82 residents of four facilities. Outcome Measures Clinical outcomes were measured using the CCI Tool and QoL data was obtained using the Australian WHOQOL‑100. Results Independent t‑test analyses were calculated to compare individual CCIs with each domain of the WHOQOL‑100, while Pearson’s product moment coefficients (r) were calculated between the total number of problem indicators and QoL scores. Significant results suggested poorer clinical outcomes adversely affected QoL. Social and spiritual QoL were particularly affected by clinical outcomes and poorer status in hydration, falls and depression were most strongly associated with lower QoL scores. Poorer clinical status as a whole was also significantly correlated with poorer QoL. Conclusions Hydration, falls and depression were most often associated with poorer resident QoL and as such appear to be key areas for clinical management in residential aged care. However, poor clinical outcomes overall also adversely affected QoL, which suggests maintaining optimum clinical status through high quality nursing care, would not only be important for resident health but also for enhancing general life quality.

Distribution of respiratory droplets in enclosed environments under different air distribution methods

Dispersion characteristics of respiratory droplets in indoor environments are of special interest in controlling transmission of airborne diseases. This study adopts an Eulerian method to investigate the spatial concentration distribution and temporal evolution of exhaled and sneezed/coughed droplets within the range of 1.0~10.0μm in an office room with three air distribution methods, i.e. mixing ventilation (MV), displacement ventilation (DV), and under-floor air distribution (UFAD). The diffusion, gravitational settling, and deposition mechanism of particulate matters are well accounted in the one-way coupling Eulerian approach. The simulation results find that exhaled droplets with diameters up to 10.0μm from normal respiration process are uniformly distributed in MV, while they are trapped in the breathing height by thermal stratifications in DV and UFAD, resulting in a high droplet concentration and a high exposure risk to other occupants. Sneezed/coughed droplets are diluted much slower in DV/UFAD than in MV. Low air speed in the breathing zone in DV/UFAD can lead to prolonged residence of droplets in the breathing zone.

Foldback current control for a DG to achieve Fast Arc Extinction in a distribution network

The distribution network reliability can be increased if distributed generators (DGs) are allowed to operate in both grid-connected and islanded operations when the network has a high DG penetration level. However, the current utility regulations do not allow for the islanded operation. The arc faults are the one of the major issues preventing the islanded operation, since the arc will not extinguish if the DGs are not disconnected. In this paper, the effect of a converter interfaced DG on an arc fault is investigated by considering different control strategies for the converter. The foldback current control characteristic is proposed to a converter interfaced DG to achieve quick arc extinction and self-restoration without disconnecting the DG in the event of an arc fault. The results are validated through PSCAD/EMTDC simulations.

The distribution and spread of citrus canker in Emerald, Australia

Citrus canker is a disease of citrus and closely related species, caused by the bacterium Xanthomonas citri subsp. citri. This disease, previously exotic to Australia, was detected on a single farm [infested premise-1, (IP1). IP is the terminology used in official biosecurity protocols to describe a locality at which an exotic plant pest has been confirmed or is presumed to exist. IP are numbered sequentially as they are detected] in Emerald, Queensland in July 2004. During the following 10 months the disease was subsequently detected on two other farms (IP2 and IP3) within the same area and studies indicated the disease first occurred on IP1 and spread to IP2 and IP3. The oldest, naturally infected plant tissue observed on any of these farms indicated the disease was present on IP1 for several months before detection and established on IP2 and IP3 during the second quarter (i.e. autumn) 2004. Transect studies on some IP1 blocks showed disease incidences ranged between 52 and 100% (trees infected). This contrasted to very low disease incidence, less than 4% of trees within a block, on IP2 and IP3. The mechanisms proposed for disease spread within blocks include weather-assisted dispersal of the bacterium (e.g. wind-driven rain) and movement of contaminated farm equipment, in particular by pivot irrigator towers via mechanical damage in combination with abundant water. Spread between blocks on IP2 was attributed to movement of contaminated farm equipment and/or people. Epidemiology results suggest: (i) successive surveillance rounds increase the likelihood of disease detection; (ii) surveillance sensitivity is affected by tree size; and (iii) individual destruction zones (for the purpose of eradication) could be determined using disease incidence and severity data rather than a predefined set area.

An investigation of differences in crash characteristics between males and females involved in a fatigue-related crash or close call event

There is consensus among community and road safety agencies that driver fatigue is a major road safety issue and it is well known that excessive fatigue is linked with an increased risk of a motor vehicle crash. Previous research has implicated a wide variety of factors involved in fatigue-related crashes and the effects of these various factors in regard to crash risk can be interpreted as causal (i.e. alcohol and/or drugs may induce fatigue states) or additive (e.g. where a lack of sleep is combined with alcohol). As such, the purpose of this investigation was to examine self-report data to determine whether there are any differences in the prevalence, crash characteristics, and travel patterns of males and females involved in a fatigue-related crash or close call event. Such research is important to understand how fatigue related incidents occur within the typical driving patterns of men and women and it provides a starting point in order to explore if males and females experience and understand the risk of diving when tired in the same way. A representative sample of (N = 1,600) residents living in the Australian Capital Territory (ACT) and New South Wales (NSW), Australia, were surveyed regarding their experience of fatigue and their involvement in fatigue-related crashes and close call incidents. Results revealed that over 35% of participants reported having had a close call or crash due to driving when tired in the five years prior to the study being conducted. In addition, the results obtained revealed a number of interesting characteristics that provide preliminary evidence that gender differences do exist when examining the prevalence, crash characteristics, and travel patterns of males and females involved in a fatigue-related crash or close call event. It is argued that the results obtained can provide particularly useful information for the refinement and further development of appropriate countermeasures that better target this complex issue.

Biochemical characterization of Aprataxin, the protein deficient in Ataxia with Oculomotor Apraxia type 1

Neurodegenerative disorders are heterogenous in nature and include a range of ataxias with oculomotor apraxia, which are characterised by a wide variety of neurological and ophthalmological features. This family includes recessive and dominant disorders. A subfamily of autosomal recessive cerebellar ataxias are characterised by defects in the cellular response to DNA damage. These include the well characterised disorders Ataxia-Telangiectasia (A-T) and Ataxia-Telangiectasia Like Disorder (A-TLD) as well as the recently identified diseases Spinocerebellar ataxia with axonal neuropathy Type 1 (SCAN1), Ataxia with Oculomotor Apraxia Type 2 (AOA2), as well as the subject of this thesis, Ataxia with Oculomotor Apraxia Type 1 (AOA1). AOA1 is caused by mutations in the APTX gene, which is located at chromosomal locus 9p13. This gene codes for the 342 amino acid protein Aprataxin. Mutations in APTX cause destabilization of Aprataxin, thus AOA1 is a result of Aprataxin deficiency. Aprataxin has three functional domains, an N-terminal Forkhead Associated (FHA) phosphoprotein interaction domain, a central Histidine Triad (HIT) nucleotide hydrolase domain and a C-terminal C2H2 zinc finger. Aprataxins FHA domain has homology to FHA domain of the DNA repair protein 5’ polynucleotide kinase 3’ phosphatase (PNKP). PNKP interacts with a range of DNA repair proteins via its FHA domain and plays a critical role in processing damaged DNA termini. The presence of this domain with a nucleotide hydrolase domain and a DNA binding motif implicated that Aprataxin may be involved in DNA repair and that AOA1 may be caused by a DNA repair deficit. This was substantiated by the interaction of Aprataxin with proteins involved in the repair of both single and double strand DNA breaks (XRay Cross-Complementing 1, XRCC4 and Poly-ADP Ribose Polymerase-1) and the hypersensitivity of AOA1 patient cell lines to single and double strand break inducing agents. At the commencement of this study little was known about the in vitro and in vivo properties of Aprataxin. Initially this study focused on generation of recombinant Aprataxin proteins to facilitate examination of the in vitro properties of Aprataxin. Using recombinant Aprataxin proteins I found that Aprataxin binds to double stranded DNA. Consistent with a role for Aprataxin as a DNA repair enzyme, this binding is not sequence specific. I also report that the HIT domain of Aprataxin hydrolyses adenosine derivatives and interestingly found that this activity is competitively inhibited by DNA. This provided initial evidence that DNA binds to the HIT domain of Aprataxin. The interaction of DNA with the nucleotide hydrolase domain of Aprataxin provided initial evidence that Aprataxin may be a DNA-processing factor. Following these studies, Aprataxin was found to hydrolyse 5’adenylated DNA, which can be generated by unscheduled ligation at DNA breaks with non-standard termini. I found that cell extracts from AOA1 patients do not have DNA-adenylate hydrolase activity indicating that Aprataxin is the only DNA-adenylate hydrolase in mammalian cells. I further characterised this activity by examining the contribution of the zinc finger and FHA domains to DNA-adenylate hydrolysis by the HIT domain. I found that deletion of the zinc finger ablated the activity of the HIT domain against adenylated DNA, indicating that the zinc finger may be required for the formation of a stable enzyme-substrate complex. Deletion of the FHA domain stimulated DNA-adenylate hydrolysis, which indicated that the activity of the HIT domain may be regulated by the FHA domain. Given that the FHA domain is involved in protein-protein interactions I propose that the activity of Aprataxins HIT domain may be regulated by proteins which interact with its FHA domain. We examined this possibility by measuring the DNA-adenylate hydrolase activity of extracts from cells deficient for the Aprataxin-interacting DNA repair proteins XRCC1 and PARP-1. XRCC1 deficiency did not affect Aprataxin activity but I found that Aprataxin is destabilized in the absence of PARP-1, resulting in a deficiency of DNA-adenylate hydrolase activity in PARP-1 knockout cells. This implies a critical role for PARP-1 in the stabilization of Aprataxin. Conversely I found that PARP-1 is destabilized in the absence of Aprataxin. PARP-1 is a central player in a number of DNA repair mechanisms and this implies that not only do AOA1 cells lack Aprataxin, they may also have defects in PARP-1 dependant cellular functions. Based on this I identified a defect in a PARP-1 dependant DNA repair mechanism in AOA1 cells. Additionally, I identified elevated levels of oxidized DNA in AOA1 cells, which is indicative of a defect in Base Excision Repair (BER). I attribute this to the reduced level of the BER protein Apurinic Endonuclease 1 (APE1) I identified in Aprataxin deficient cells. This study has identified and characterised multiple DNA repair defects in AOA1 cells, indicating that Aprataxin deficiency has far-reaching cellular consequences. Consistent with the literature, I show that Aprataxin is a nuclear protein with nucleoplasmic and nucleolar distribution. Previous studies have shown that Aprataxin interacts with the nucleolar rRNA processing factor nucleolin and that AOA1 cells appear to have a mild defect in rRNA synthesis. Given the nucleolar localization of Aprataxin I examined the protein-protein interactions of Aprataxin and found that Aprataxin interacts with a number of rRNA transcription and processing factors. Based on this and the nucleolar localization of Aprataxin I proposed that Aprataxin may have an alternative role in the nucleolus. I therefore examined the transcriptional activity of Aprataxin deficient cells using nucleotide analogue incorporation. I found that AOA1 cells do not display a defect in basal levels of RNA synthesis, however they display defective transcriptional responses to DNA damage. In summary, this thesis demonstrates that Aprataxin is a DNA repair enzyme responsible for the repair of adenylated DNA termini and that it is required for stabilization of at least two other DNA repair proteins. Thus not only do AOA1 cells have no Aprataxin protein or activity, they have additional deficiencies in PolyADP Ribose Polymerase-1 and Apurinic Endonuclease 1 dependant DNA repair mechanisms. I additionally demonstrate DNA-damage inducible transcriptional defects in AOA1 cells, indicating that Aprataxin deficiency confers a broad range of cellular defects and highlighting the complexity of the cellular response to DNA damage and the multiple defects which result from Aprataxin deficiency. My detailed characterization of the cellular consequences of Aprataxin deficiency provides an important contribution to our understanding of interlinking DNA repair processes.

Postpartum fatigue and driving : relating experiences, thoughts and opinions 12 weeks post-birth

Fatigue in the postnatal period is such a common experience for most mothers that the term ‘postpartum fatigue’ (PPF) has been coined to describe it. When new mothers experience extreme fatigue, it follows that their physical health, mental health, and social-wellbeing is negatively affected. It is interesting to note that there is a distinct lack of empirical investigations focusing on the link between PPF and increased risk of injury; particularly when the links between fatigue and increased risk of road crashes are well documented. The purpose of this investigation was to undertake pilot research to develop an understanding of the duration of PPF and the performance impairments experienced by new mothers when involved in safety-sensitive activities, such as driving a motor vehicle. Semi-structured interviews were undertaken with women (N = 24) at 12 weeks postpartum living in South-east Queensland, Australia. Key themes were identified; with a particular emphasis towards understanding the link between the participant’s experience of postpartum fatigue and the impact this has on their overall cognitive and physiological functioning, as well as their experience of the driving task. Further, sleep/wake data was collected and using the Karolinska Sleepiness Scale (KSS) the potential crash risk for this group of mothers is discussed. It is proposed that the findings of this investigation could be used to improve current knowledge among new mothers and practitioners regarding the mechanisms and consequences of fatigue and to inform interventions that lead to a decreased risk of injury associated with postpartum fatigue.

The interaction order of Second Life : how micro sociology can contribute to online games innovation

This paper uses the virtual world Second Life (as Web 2.0 environment) to discuss how sociological theory is a relevant tool for innovation in the area of games design as a methodological strategy. Via the theories of Erving Goffman’s interaction order the paper illustrates how micro studies of online interaction demonstrate active accounts of membership and complex interactivity. In order to achieve this, the paper outlines a methodological tool to assist in the application of micro sociology to Web 2.0 environments that accounts for the multiple dimensions of participation within the digital field.

End-of-life care pathways for improving outcomes in caring for the dying (Protocol)

We aim to assess the effects of end-of-life care pathways, compared with usual care or with care guided by another end-of-life care pathway across all healthcare settings (hospitals, residential aged care facilities, community). In particular, we aim to assess the effects on symptom severity and quality of life of people who are dying and/or those related to the care such as families, caregivers and health professionals.

Exercise for health : a breast cancer recovery program - quality of life benefits [Conference Abstract]

Introduction: Five-year survival from breast cancer in Australia is 87%. Hence, ensuring a good quality of life (QOL) has become a focal point of cancer research and clinical interest. Exercise during and after treatment has been identified as a potential strategy to optimise QOL of women diagnosed with breast cancer.----- Methods: Exercise for Health is a randomised controlled trial of an eight-month, exercise intervention delivered by Exercise Physiologists. An objective of this study was to assess the impact of the exercise program during and following treatment on QOL. Queensland women diagnosed with unilateral breast cancer in 2006/07 were eligible to participate. Those living in urban-Brisbane (n=194) were allocated to either the face-to-face exercise group, the telephone exercise group, or the usual-care group, and those living in rural Queensland (n=143) were allocated to the telephone exercise group or the usual-care group. QOL, as assessed by the Functional Assessment of Cancer Therapy-Breast (FACT-B+4) questionnaire, was measured at 4-6 weeks (pre-intervention), 6 months (mid-intervention) and 12 months (three months post-intervention) post-surgery.----- Results: Significant (P<0.01) increases in QOL were observed between pre-intervention and three months post-intervention 12 months post-surgery for all women. Women in the exercise groups experienced greater mean positive changes in QOL during this time (+10 points) compared with the usual-care groups (+5 to +7 points) after adjusting for baseline QOL. Although all groups experienced an overall increase in QOL, approximately 20% of urban and rural women in the usual-care groups reported a decline in QOL, compared with 10% of women in the exercise groups.----- Conclusions: This work highlights the potential importance of participating in physical activity to optimise QOL following a diagnosis of breast cancer. Results suggest that the telephone may be an effective medium for delivering exercise counselling to newly diagnosed breast cancer patients.

The prognostic significance of quality of life following breast cancer [Conference Abstract]

Introduction: Evidence suggests a positive association between quality of life (QOL). and overall survival(OS). among metastatic breast cancer (BC). patients, although the relationship in early-stage BC is unclear. This work examines the association between QOL and OS following a diagnosis of early-stage BC. ----- Methods: A population-based sample of Queensland women (n=287). with early-stage, invasive, unilateral BC, were prospectively observed for a median of 6.6 years. QOL was assessed at six and 18 months post-diagnosis using the Functional Assessment of Cancer Therapy, Breast FACT-B+4. questionnaire. Raw scores for the FACT-B+4 scales were computed and individuals were categorised according to whether QOL declined, remained stable or improved over time. OS was measured from the date of diagnosis to the date of death or was censored at the date of last follow-up. Risk ratios (RR) and 95% confidence intervals (CI). for the association between QOL and OS were obtained using Cox proportional hazards survival models adjusted for confounding characteristics. ----- Results: A total of 27 (9.4%). women died during the follow-up period. Three baseline QOL scales (emotional, general and overall QOL) were significantly associated with OS, with RRs ranging between 0.89 95% CI: 0.81, 0.98; P=0.01. and 0.98 (95% CI: 0.96, 0.99; P=0.03),indicating a 2%-11% reduced risk of death for every one unit increase in QOL. When QOL was categorised according to changes between six and 18 months post-diagnosis, analyses showed that for those who experienced declines in functional and physical QOL, risk of death increased by two- (95% CI: 1.43, 12.52; P<0.01) and four-fold (95% CI: 1.15, 7.19; P=0.02), respectively. Conclusions: This work indicates that specific QOL scales at six months post-diagnosis, and changes in certain QOL scales over the subsequent 12-month period (as measured by the FACT-B+4), are associated with overall survival in women with early-stage breast cancer.