129 resultados para neonatal end-of-life care


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Background: Substantial numbers of cancer patients use complementary medicine therapies, even without a supportive evidence base. This study aimed to evaluate in a randomized controlled trial, the use of Medical Qigong (MQ) compared with usual care to improve the quality of life (QOL) of cancer patients. Patients and methods: One hundred and sixty-two patients with a range of cancers were recruited. QOL and fatigue were measured by Functional Assessment of Cancer Therapy—General and Functional Assessment of Cancer Therapy—Fatigue, respectively, and mood status by Profile of Mood State. The inflammatory marker serum C-reactive protein (CRP) was monitored serially. Results: Regression analysis indicated that the MQ group significantly improved overall QOL (t144 = −5.761, P < 0.001), fatigue (t153 = −5.621, P < 0.001), mood disturbance (t122 =2.346, P = 0.021) and inflammation (CRP) (t99 = 2.042, P < 0.044) compared with usual care after controlling for baseline variables. Conclusions: This study indicates that MQ can improve cancer patients’ overall QOL and mood status and reduce specific side-effects of treatment. It may also produce physical benefits in the long term through reduced inflammation.

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Background Nurse‐patient communication in the hemodialysis context is unique given the amount of time spent together in a confined clinical room. Poor communication may lead to low-quality nursing care and undesirable patient outcomes.

Aim To explore the use of images as a visual communication technique for nurses and patients in the hemodialysis context.

Methods Descriptive qualitative design. Fifty-two cards containing specific photos, illustrations, and words were used to facilitate conversations about being on hemodialysis between patients (n = 9) and two nurse interviewers. Interview transcripts were thematically analysed.

Findings An overall theme titled ‘revealing the hidden struggles of living on dialysis’ conceptually captured three sub-themes: (1) the increased importance of relationships; (2) the struggle with money; and (3) quality over quantity of life. The cards assisted in uncovering these often covert (to nurses) aspects of dialysis patients' lives.

Conclusion Nurses may need to be aware of the dialysis patients' hidden struggles which include the importance of relationships, financial issues, and the importance of quality aspects such as travel. The use of images may assist in revealing the important issues for each patient struggling with the restrictive life that is imposed by dialysis.

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Purpose:
To identify the demographic factors, impairments and activity limitations that contribute to health-related quality of life (HRQOL) in people with idiopathic Parkinson’s disease (PD).

Method:
Two hundred and ten individuals with idiopathic PD who participated in the baseline assessment of a randomized clinical trial were included. The Parkinson’s Disease Questionnaire-39 summary index was used to quantify HRQOL. In order to provide greater clarity regarding the determinants of HRQOL, path analysis was used to explore the relationships between the various predictors in relation to the functioning and disability framework of the International Classification of Functioning model.

Results:
The two models of HRQOL that were examined in this study had a reasonable fit with the data. Activity limitations were found to be the strongest predictor of HRQOL. Limitations in performing self-care activities contributed the most to HRQOL in Model 1 (β = 0.38; p < 0.05), while limitations in functional mobility had the largest contribution in Model 2 (β = −0.31; p < 0.0005). Self-reported history of falls was also found to have a significant and direct relationship with HRQOL in both models (Model 1 β = −0.11; p < 0.05; Model 2 β = −0.21; p < 0.05).

Conclusions:
Health-related quality of life in PD is associated with self-care limitations, mobility limitations, self-reported history of falls and disease duration. Understanding how these factors are inter-related may assist clinicians focus their assessments and develop strategies that aim to minimize the negative functional and social sequelae of this debilitating disease.

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Background: The relationship between health-related quality of life (HRQoL) in people with Parkinson’s disease and their caregivers is little understood and any effects on caregiver strain remain unclear. This paper examines these relationships in an Australian sample.
Methods:
Using the generic EuroQol (EQ-5D) and disease-specific Parkinson’s Disease Questionnaire-39 Item (PDQ- 39), HRQoL was evaluated in a sample of 97 people with PD and their caregivers. Caregiver strain was assessed using the Modified Caregiver Strain Index. Associations were evaluated between: (i) caregiver and care-recipient HRQoL; (ii) caregiver HRQoL and caregiver strain, and; (iii) between caregiver strain and care-recipient HRQoL.
Results: No statistically significant relationships were found between caregiver and care-recipient HRQoL, or between caregiver HRQoL and caregiver strain. Although this Australian sample of caregivers experienced relatively good HRQoL and moderately low strain, a significant correlation was found between HRQoL of people with PD and caregiver strain (rho 0.43, p<.001).
Conclusion:
Poor HRQoL in people with PD is associated with higher strain in caregivers. Therapy interventions may target problems reported as most troublesome by people with PD, with potential to reduce strain on the caregiver

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Background

Many inpatients receive little or no rehabilitation on weekends. Our aim was to determine what effect providing additional Saturday rehabilitation during inpatient rehabilitation had on functional independence, quality of life and length of stay compared to 5 days per week of rehabilitation.

Methods

This was a multicenter, single-blind (assessors) randomized controlled trial with concealed allocation and 12-month follow-up conducted in two publically funded metropolitan inpatient rehabilitation facilities in Melbourne, Australia. Patients were eligible if they were adults (aged ≥18 years) admitted for rehabilitation for any orthopedic, neurological or other disabling conditions excluding those admitted for slow stream rehabilitation/geriatric evaluation and management. Participants were randomly allocated to usual care Monday to Friday rehabilitation (control) or to Monday to Saturday rehabilitation (intervention). The additional Saturday rehabilitation comprised physiotherapy and occupational therapy. The primary outcomes were functional independence (functional independence measure (FIM); measured on an 18 to 126 point scale), health-related quality of life (EQ-5D utility index; measured on a 0 to 1 scale, and EQ-5D visual analog scale; measured on a 0 to 100 scale), and patient length of stay. Outcome measures were assessed on admission, discharge (primary endpoint), and at 6 and 12 months post discharge.

Results

We randomly assigned 996 adults (mean (SD) age 74 (13) years) to Monday to Saturday rehabilitation (n = 496) or usual care Monday to Friday rehabilitation (n = 500). Relative to admission scores, intervention group participants had higher functional independence (mean difference (MD) 2.3, 95% confidence interval (CI) 0.5 to 4.1, P = 0.01) and health-related quality of life (MD 0.04, 95% CI 0.01 to 0.07, P = 0.009) on discharge and may have had a shorter length of stay by 2 days (95% CI 0 to 4, P = 0.1) when compared to control group participants. Intervention group participants were 17% more likely to have achieved a clinically significant change in functional independence of 22 FIM points or more (risk ratio (RR) 1.17, 95% CI 1.03 to 1.34) and 18% more likely to have achieved a clinically significant change in health-related quality of life (RR 1.18, 95% CI 1.04 to 1.34) on discharge compared to the control group. There was some maintenance of effect for functional independence and health-related quality of life at 6-month follow-up but not at 12-month follow-up. There was no difference in the number of adverse events between the groups (incidence rate ratio = 0.81, 95% CI 0.61 to 1.08).

Conclusions

Providing an additional day of rehabilitation improved functional independence and health-related quality of life at discharge and may have reduced length of stay for patients receiving inpatient rehabilitation. 

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Background
Cost-effectiveness analyses of interventions for older adults have traditionally focused on health status. There is increasing recognition of the need to develop new instruments to capture quality of life in a broader sense in the face of age-associated increasing frailty and declining health status, particularly in the economic evaluation of aged and social care interventions which may have positive benefits beyond health. 


Objective
To explore the relative importance of health and broader quality of life domains for defining quality of life from the perspective of older South Australians.

Methods
Older adults (n=21) from a day rehabilitation facility in Southern Adelaide, South Australia attended one of two audiorecorded focus groups. A mixed methods (qualitative and quantitative) approach was adopted. The study included three main components. Firstly, a general group discussion on quality of life and the factors of importance in defining quality of life. Secondly, a structured ranking exercise in which individuals were asked to rank domains from the brief Older People’s Quality of Life questionnaire (OPQOL-brief) and Adult Social Care Outcomes Toolkit (ASCOT) in order of importance. Thirdly, participants were asked to self-complete the Euroqol (EQ-5D) a measure of health status, and two broader quality of life measures: the OPQOL-brief and ASCOT.

Results
Mean scores on the EQ-5D, OPQOL-brief and ASCOT were 0.71 (SD 0.20, range 0.06-1.00), 54.6 (SD 5.5, range 38-61) and 0.87 (SD 0.13, range 0.59-1.00) respectively, with higher scores reflecting better ratings of QOL. EQ-5D scores were positively associated with OPQOL-brief (rho: .730, p<.01), but not ASCOT. Approximately half (52.4%) of the respondents ranked either “health” or “psychological and emotional well- being” as the domain most important to their quality of life. However, one-third (33.3%) of the total sample ranked a non-health domain from the ASCOT or OPQOL-brief (safety, dignity, independence) as the most important contributing factor to their overall quality of life. Qualitative analysis of focus group transcripts supported the high value of both health-related (health, psychological well-being) and social (independence, safety) domains to quality of life.

Conclusions
Older adults value both health and social domains as important to their overall quality of life. Future economic evaluations of health, community and aged-care services for older adults should include assessment of both healthrelated and broader aspects quality of life.

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 Introduction
Our aim was to provide descriptive information to burn clinicians, who have extensive experience treating major burns and determining prognosis, as to whether significant differences in mortality exist between major burns injuries and the comparatively less common toxic epidermal necrolysis for a given age and total body surface area percentage.

Methods
Retrospective data was analyzed of all deceased patients admitted to the Victorian Adult Burns Service in Melbourne, Australia over a period of 10 years with greater than 30% total body surface area burned or greater than 30% total body surface area epidermal detachment in the case of toxic epidermal necrolysis. Retrospective data was also collected on all patients, survivors and deceased, with toxic epidermal necrolysis and these patients were matched with burns patients by age and % total body surface area burned. Comparisons in outcomes were performed with mortality being the primary variable of interest.

Results
Toxic epidermal necrolysis patients that died were older (median: 68.5 vs 57 yrs; P = 0.04), had a longer length of hospital stay (36.5 vs 0.8 days; P = 0.001) and significantly longer periods of mechanical ventilation (1404 vs 14.5 h; P = 0.011) than major burns patients that died. When toxic epidermal necrolysis patients were matched to major burns patients by age and total body surface area burned, there were no significant differences between the two groups with respect to mortality.

Conclusion
Palliative care approaches are more frequently administered at the time of presentation for major burns patients in comparison to toxic epidermal necrolysis patients. This may be due to a perception that if toxic epidermal necrolysis patients can survive their initial systemic injury, they are likely to survive, as opposed to major burns patients who often undergo extensive surgery and for whom other factors should be taken into account in the context of end-of-life decision making.

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To determine whether bronchoalveolar lavage (BAL)-directed therapy for infants and young children with cystic fibrosis (CF), rather than standard therapy, was justified on the grounds of a decrease in average costs and whether the use of BAL reduced treatment costs associated with hospital admissions.

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Aim: Climate change is expected to increase the frequency and intensity of extreme climatic events, such as severe droughts and intense rainfall periods. We explored how the avifauna of a highly modified region responded to a 13-year drought (the 'Big Dry'), followed by a two-year period of substantially higher than average rainfall (the 'Big Wet'). Location: Temperate woodlands in north central Victoria, Australia. Methods: We used two spatially extensive, long-term survey programmes, each of which was repeated three times: early and late in the Big Dry, and in the Big Wet. We compared species-specific changes in reporting rates between periods in both programmes to explore the resistance (the ability to persist during drought) and resilience (extent of recovery post-drought) of species to climate extremes. Results: There was a substantial decline in the reporting rates of 42-62% (depending on programme) of species between surveys conducted early and late in the Big Dry. In the Big Wet, there was some recovery, with 21-29% of species increasing substantially. However, more than half of species did not recover and 14-27% of species continued to decline in reporting rate compared with early on in the Big Dry. Species' responses were not strongly related to ecological traits. Species resistance to the drought was inversely related to resilience in the Big Wet for 20-35% of the species, while 76-78% of species with low resistance showed an overall decline across the study period. Conclusions: As declines occurred largely irrespective of ecological traits, this suggests a widespread mechanism is responsible. Species that declined the most during the Big Dry did not necessarily show the greatest recoveries. In already much modified regions, climate extremes such as extended drought will induce on-going changes in the biota. © 2014 John Wiley & Sons Ltd.

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This article reviews recent studies relating to the impact of depression and its treatment on the health-related quality of life (HRQOL) of patients with coronary artery disease (CAD).

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Aims: To identify the impact of in-reach services providing specialist nursing care on outcomes for older people presenting to the emergency department from residential aged care. Methods: Retrospective cohort study compared clinical outcomes of 2278 presentations from 2009 with 2051 presentations from 2011 before and after the implementation of in-reach services. Results: Median emergency department length of stay decreased by 24 minutes (7.0 vs 6.6 hours, P<0.001) and admission rates decreased by 23% (68 vs 45%, P<0.001). The proportion of people with repeat emergency department visits within six months decreased by 12% (27 vs 15%). The proportion of admitted patients who were discharged with an end of life palliative care plan increased by 13% (8 vs 21%, P=0.007). Conclusions: There was a significant reduction in the median length of stay, fewer hospital admissions and fewer repeat visits for people from residential aged care following implementation of in-reach services.

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AIM: The American Society of Clinical Oncology and US Institute of Medicine emphasize the need to trial novel models of posttreatment care, and disseminate findings. In 2011, the Victorian State Government (Australia) established the Victorian Cancer Survivorship Program (VCSP), funding six 2-year demonstration projects, targeting end of initial cancer treatment. Projects considered various models, enrolling people of differing cancer types, age and residential areas. We sought to determine common enablers of success, as well as challenges/barriers. METHODS: Throughout the duration of the projects, a formal "community of practice" met regularly to share experiences. Projects provided regular formal progress reports. An analysis framework was developed to synthesize key themes and identify critical enablers and challenges. Two external reviewers examined final project reports. Discussion with project teams clarified content. RESULTS: Survivors reported interventions to be acceptable, appropriate and effective. Strong clinical leadership was identified as a critical success factor. Workforce education was recognized as important. Partnerships with consumers, primary care and community organizations; risk stratified pathways with rapid re-access to specialist care; and early preparation for survivorship, self-management and shared care models supported positive project outcomes. Tailoring care to individual needs and predicted risks was supported. Challenges included: lack of valid assessment and prediction tools; limited evidence to support novel care models; workforce redesign; and effective engagement with community-based care and issues around survivorship terminology. CONCLUSION: The VCSP project outcomes have added to growing evidence around posttreatment care. Future projects should consider the identified enablers and challenges when designing and implementing survivorship care.

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Abstract
The transition from adolescence to young adulthood is a watershed period in development that carries risk for poor psychosocial adjustment. It also carries potential for positive transitions into the caregiving roles and responsibilities of adult life. Research to date has predominantly focused on adolescent predictors of problematic rather than positive transitions; yet predictors of the latter hold equal (if not greater) promise for informing health promoting interventions. The purpose of this study was threefold: (1) to use Latent Profile Analysis (LPA) to define patterns of psychosocial adjustment and maladjustment in young adulthood (21-years of age); (2) to examine the unique role of adolescent prosocial behaviour (e.g., volunteering and civic engagement) in promoting adjustment and reducing maladjustment in young adulthood; and, (3) to examine whether protective developmental relationships are maintained after adjustment for other covariates including socio-economic background factors and personality characteristics. Data were drawn from the Victorian cohort of the International Youth Development Study (IYDS; N = 2407), a representative sample of students in Victoria, Australia. Students were assessed in Grade 9 (Mean age = 15-years) and followed up at age 21-years. LPA identified three psychosocial adjustment classes at age 21 defined as: (1) Adjusted (24.8 %); (2) Normative (63.9 %); and, (3) Maladjusted (11.3 %). Adolescent volunteering, belief in a moral order, family opportunities for prosocial behaviour, and commitment to school were associated with enhanced adjustment and reduced maladjustment in young adulthood. Findings highlight the potential benefit of interventions designed to enhance adolescent prosocial behaviours and care orientation in promoting healthy transitions into young adult life.

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BACKGROUND: Poor health-related quality of life (HRQL) has been shown to be predictive of adverse outcomes in cardiac patients. As women with coronary heart disease have been shown to have lower HRQL than men with coronary heart disease, women are at greater risk of a poor clinical outcome. This study tested the effect of a 12-week home walking intervention after completion of outpatient cardiac rehabilitation (OCR) on HRQL and maintenance of physical activity among women. DESIGN: Multicenter two-group randomized trial. METHODS: After completion of OCR, participants were randomly allocated to the intervention or usual care groups. The outcomes were HRQL (assessed using the MacNew Heart Disease HRQL instrument) and self-reported physical activity (assessed using the Stages of Change model of exercise behavior) at 3, 6, and 12 months after OCR. RESULTS: Seventy-two women were randomized to the intervention and 81 to usual care. Attrition was greater in the treatment group (13 vs. 1%). HRQL scores increased relative to the base level in both arms and were significantly higher in the intervention group at 6 months, but not at 3 or 12 months. Maintenance of physical activity declined over time in both groups, however, this decline was significantly reduced among women in the intervention group. CONCLUSION: HRQL improved in both groups, but seemed to increase earlier among women in the intervention group. As maintenance of physical activity was higher among women in the intervention group, this minimal intervention could be used to facilitate women's progression from supervised to independent exercise.