64 research outputs found
Who provides care for people dying of cancer? A comparison of a rural and metropolitan cohort in a South Australian bereaved population study
No full textAuthor version under embargo for 12 months from publication. This is the peer reviewed version of the following article: [Burns, C.M., Dal Grande, E., Tieman, J.J., Abernethy, A.P. and Currow, D.C. (2015). Who provides care for people dying of cancer? A comparison of a rural and metropolitan cohort in a South Australian bereaved population study. Australian Journal of Rural Health, 23(1) pp. 24-31. ], which has been published in final form at [DOI:10.1111/ajr.12168]. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.Background: People in the rural and remote areas often have disparities in access to services and specific challenges when called upon to provide care. In order to plan and resource palliative care services, it is important to know what levels of service are available and what are the perceived unmet needs of caregivers for people at the end of life.
Purpose: To examine and compare urban and rural palliative care service availability and patterns of care from randomised, population-based surveys of caregivers of people at the end of life.
Methods: Survey responses on the death of ‘someone close’ from 23,588 interviews of South Australians conducted between 2001 and 2007 are analysed exploring palliative care service availability, caregiving provided, and characteristics of the deceased and caregivers.
Results: There was no difference in reported rates of accessing specialist palliative care services between rural and urban respondents (in unadjusted and adjusted analyses) nor did the proportion of people for whom cancer was their life-limiting illness. There was greater reliance on friends than first degree relatives in hands-on care provided at the end of life in rural settings. The rates of reported need for more support did not differ between urban and rural respondents for caregivers of people at the end of life.
Conclusion
Use of palliative care services was similar for rural and urban caregivers for someone close at the end of life with similar levels of met and unmet needs
Chemotherapy and radiotherapy: When to call it quits
No full textAbstract: Background: Patients diagnosed with cancer are often treated with chemotherapy and radiotherapy with curative intent. The transition from curative to palliative intent involves re-evaluation of treatment, and has to take into account the attitudes, beliefs and life aims of the patient. Objective: To discuss the difficulties in determining when to cease chemotherapy and radiotherapy in patients with advanced cancer. Discussion: The concept of treatment evaluation using a ‘burden versus benefit’ paradigm is discussed. Treatment aims must be in concordance with those of the patient, which are often couched in functional terms or linked to future significant life events. Chemotherapy and radiotherapy can offer patients in the palliative phase of cancer illness, benefits in terms of relief of symptoms and meaningful prolongation of life, and should be considered in appropriate circumstances. (author abstract
Development and external validation of the ‘Global Surgical-Site Infection’ (GloSSI) predictive model in adult patients undergoing gastrointestinal surgery
No full text© The Author(s) 2024. Published by Oxford University Press on behalf of BJS Foundation Ltd.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which
permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.Background Identification of patients at high risk of surgical-site infections may allow surgeons to minimize associated morbidity. However, there are significant concerns regarding the methodological quality and transportability of models previously developed. The aim of this study was to develop a novel score to predict 30-day surgical-site infection risk after gastrointestinal surgery across a global context and externally validate against existing models. Methods This was a secondary analysis of two prospective international cohort studies: GlobalSurg-1 (July–November 2014) and GlobalSurg-2 (January–July 2016). Consecutive adults undergoing gastrointestinal surgery were eligible. Model development was performed using GlobalSurg-2 data, with novel and previous scores externally validated using GlobalSurg-1 data. The primary outcome was 30-day surgical-site infections, with two predictive techniques explored: penalized regression (least absolute shrinkage and selection operator (‘LASSO’)) and machine learning (extreme gradient boosting (‘XGBoost’)). Final model selection was based on prognostic accuracy and clinical utility. Results There were 14 019 patients (surgical-site infections = 12.3%) for derivation and 8464 patients (surgical-site infections = 11.4%) for external validation. The LASSO model was selected due to similar discrimination to extreme gradient boosting (AUC 0.738 (95% c.i. 0.725 to 0.750) versus 0.737 (95% c.i. 0.709 to 0.765)), but greater explainability. The final score included six variables: country income, ASA grade, diabetes, and operative contamination, approach, and duration. Model performance remained good on external validation (AUC 0.730 (95% c.i. 0.715 to 0.744); calibration intercept −0.098 and slope 1.008) and demonstrated superior performance to the external validation of all previous models. Conclusion The ‘Global Surgical-Site Infection’ score allows accurate prediction of the risk of surgical-site infections with six simple variables that are routinely available at the time of surgery across global settings. This can inform the use of intraoperative and postoperative interventions to modify the risk of surgical-site infections and minimize associated harm.https://academic.oup.com/bjs/article/111/6/znae129/769699
Opioids, Exertion, and Dyspnea: A Review of the Evidence
No full text© 2014, © The Author(s) 2014. The aim of this paper is to review the evidence for a role for opioids as an intervention for exertion induced breathlessness with regard to exercise tolerance and breathlessness intensity. Current knowledge about exogenous opioids in exertion-induced breathlessness due to disease comes from a variety of phase 2 feasibility or pilot designs with differing duration, doses, drugs, exercise regimes, underlying aetiologies, and outcome measures. They provide interesting data but firm conclusions for either breathlessness severity or exercise endurance cannot be drawn. There are no adequately powered phase 3 trials of opioids which show improved exercise tolerance and/or exertion induced breathlessness. Low dose oral morphine seems well tolerated by most, and is beneficial for breathlessness intensity. Current work to investigate the effect on exercise tolerance is ongoing
Breathlessness - Current and emerging mechanisms, measurement and management: A discussion from an European Association of Palliative Care workshop
No full textBackground: A pre-conference workshop at the 2012 European Association of Palliative Care meeting discussed the current scientific and clinical aspects of breathlessness. Aim: To describe a current overview of clinically relevant science in breathlessness. Design: A collation of workshop presentations and discussions. Data sources: Narrative review. Results: The mismatch between the drive to breathe and the ability to breathe underlies the major theories of breathlessness unifying central processing of peripheral inputs including more recent recognition of the importance of peripheral muscles in mediating efferent inputs, supporting reduction of breathlessness with muscle conditioning. Key questions are whether there is a 'final common pathway' for breathlessness? Are the central nervous system targets for reducing breathlessness identical irrespective of underlying aetiology? Central nervous system functional imaging confirms an ability to differentiate severity (intensity) from affective components (unpleasantness). Breathlessness generates suffering across the community for patients and their caregivers often for long periods. The exertional nature of breathlessness means that reduction rather than elimination of the symptom is the therapeutic goal. No single intervention is likely to relieve chronic refractory breathlessness, but interventions made up of several components may provide incremental relief. Having optimally treated any underlying reversible components, the resultant chronic refractory breathlessness can be treated with pharmacological, psychological and physical therapies to reduce the sensation and its impacts. Conclusion: Ensuring optimal delivery of interventions for breathlessness, whose design is underpinned by improving the understanding in the aetiology and maintenance of breathlessness, is the subject of ongoing controlled clinical trials. © The Author(s) 2013
Symptomatic oxygen for non-hypoxaemic chronic obstructive pulmonary disease.
No full textDyspnoea is a common symptom in chronic obstructive pulmonary disease (COPD). People who are hypoxaemic may be given long-term oxygen relief therapy (LTOT) to improve their life expectancy and quality of life. However, the symptomatic benefit of home oxygen therapy in mildly or non-hypoxaemic people with COPD with dyspnoea who do not meet international funding criteria for LTOT (PaO(2)< 55 mmHg or other special cases) is unknown. To determine the efficacy of oxygen versus medical air for relief of subjective dyspnoea in mildly or non-hypoxaemic people with COPD who would not otherwise qualify for home oxygen therapy. The main outcome was patient-reported dyspnoea and secondary outcome was exercise tolerance. We searched the Cochrane Airways Group Register, Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE and EMBASE, to November 2009, to identify randomised controlled trials. We handsearched reference lists of included articles. We only included randomised controlled trials of oxygen versus medical air in mildly or non-hypoxaemic people with COPD. Two review authors independently assessed articles for inclusion. One review author completed data extraction and methodological quality assessment. A second review author then over-read evidence tables to assess for accuracy. Twenty-eight trials on 702 patients met the criteria for inclusion; 18 trials (431 participants) were included in the meta-analysis. Oxygen reduced dyspnoea with a standardised mean difference (SMD) of -0.37 (95% confidence interval (CI) -0.50 to -0.24, P < 0.00001). We observed significant heterogeneity. Oxygen can relieve dyspnoea in mildly and non-hypoxaemic people with COPD who would not otherwise qualify for home oxygen therapy. Given the significant heterogeneity among the included studies, clinicians should continue to evaluate patients on an individual basis until supporting data from ongoing, large randomised controlled trials are available
Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey
No full textBackground: Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful. Methods: In a population survey, a respondent-defined question was asked regarding 'additional spiritual support' that would have been helpful if someone 'close to them had died' an expected death in the previous five years. Data (socio-demographic [respondent]); clinical [deceased]) directly standardized to the whole population were analysed. Results: There were 14,902 participants in this study (71.6% participation rate), of whom 31% (4665) experienced such a death and 1084 (23.2%) provided active hands-on (day-to-day or intermittent) care. Fifty-one of the 1084 (4.7%) active caregivers identified that additional spiritual support would have been helpful. The predictors in a regression analysis were: other domains where additional support would have been helpful (OR 1.69; 95% CI 1.46-1.94; p < 0.001); and being female (OR 3.23; 95% CI 1.23 to 8.33; p = 0.017). 'Additional spiritual support being helpful' was strongly associated with higher rates where additional support in other domains would also have been helpful in: all bereaved people (2.7 vs 0.6; p < 0.0001); and in active caregivers (3.7 vs 0.8; p < 0.0001). Conclusion: People who identify that additional spiritual support would have been helpful have specific demographic characteristics. There is also a strong association with the likelihood of identifying that a number of other additional supports would have been helpful. Clinically, the need for additional spiritual support should open a conversation about other areas where the need for further support may be identified. © The Author(s) 2010
Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: Community facilitator pilot
No full textBackground: Although the unit of care in palliative care is defined as the patient and their family, there are few rigorous studies on how to improve support for family and friends as they take on the role of caregiver for someone at the end of life. Aim: Separate to patient evaluation and care, this pilot study aimed to define the feasibility and possible outcome measures to evaluate routine assessments and supports specifically for caregivers. Design: In a quasi-experimental design, two communities were included: one received standard specialist palliative care support and one additionally was allocated to a community network facilitator who assessed caregivers' needs and helped mobilize the caregiver's own support network or initiated contact with other community supports in three planned visits. Data were collected at baseline, 4 and 8 weeks using three caregiver assessment tools. Within group comparisons were made using Wilcoxon signed rank test and between group using the Mann-Whitney U-test. Participants: Sixty-six caregivers participated. Results: At 8 weeks, participants in the intervention arm showed significant within-group improvement in caregiver fatigue, sufficient support from others, decreased resentment in the role, greater confidence in asking for assistance and were better able to find resources and support. No between-group changes were seen in this pilot study. Conclusions: There were objective measures of improved support within the intervention group over time for caregivers through the active engagement of the community network facilitator. This pilot supports the case for an adequately powered study. © 2011 The Author(s)
Moving on: Factors associated with caregivers’ bereavement adjustment using a random population-based face-to-face survey
No full text© 2017, © The Author(s) 2017. Background: Providing care at end of life has consequences for caregivers’ bereavement experience. ‘Difficulty moving on with life’ is an informative and unbiased symptom of prolonged grief disorder. Predictors of bereaved caregivers’ ability to ‘move on’ have not been examined across the population. Aim: To identify the characteristics of bereaved hands-on caregivers who were, and were not, able to ‘move on’ 13–60 months after the ‘expected’ death of someone close. Design: The South Australian Health Omnibus is an annual, random, cross-sectional community survey. From 2000 to 2007, respondents were asked about providing care for someone terminally ill and their subsequent ability to ‘move on’. Multivariable logistic regression models explored the characteristics moving on and not moving on. Setting: Respondents were aged ⩾15 years and lived in households within South Australia. They had provided care to someone who had died of terminal illness in the preceding 5 years. Results: A total of 922 people provided hands-on care. In all, 80% of caregivers (745) had been able to ‘move on’. Closeness of relationship to the deceased, increasing caregiver age, caregiver report of needs met, increasing time since loss, sex and English-speaking background were significantly associated with ‘moving on’. A closer relationship to the deceased, socioeconomic disadvantage and being male were significantly associated with not ‘moving on’. Conclusion: These results support the relevance of ‘moving on’ as an indicator of caregivers’ bereavement adjustment. Following the outcomes of bereaved caregivers longitudinally is essential if effective interventions are to be developed to minimise the risk of prolonged grief disorder
Health-related quality of life measured using the EQ-5D–5L: South Australian population norms
No full textOpen AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Background
Although a five level version of the widely-used EuroQol 5 dimensions (EQ-5D) instrument has been developed, population norms are not yet available for Australia to inform the future valuation of health in economic evaluations. The aim of this study was to estimate HrQOL normative values for the EQ-5D-5L preference-based measure in a large, randomly selected, community sample in South Australia.
Methods
The EQ-5D-5L instrument was included in the 2013 South Australian Health Omnibus Survey, an interviewer-administered, face-to-face, cross-sectional survey. Respondents rated their level of impairment across dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) and global health rating on a visual analogue scale (EQ-VAS). Utility scores were derived using the newly-developed UK general population-based algorithm and relationships between utility and EQ-VAS scores and socio-demographic factors were also explored using multivariate regression analyses.
Results
Ultimately, 2,908 adults participated in the survey (63.4 % participation rate). The mean utility and EQ-VAS scores were 0.91 (95 CI 0.90, 0.91) and 78.55 (95 % CI 77.95, 79.15), respectively. Almost half of respondents reported no problems across all dimensions (42.8 %), whereas only 7.2 % rated their health >90 on the EQ-VAS (100 = the best health you can imagine). Younger age, male gender, longer duration of education, higher annual household income, employment and marriage/de facto relationships were all independent, statistically significant predictors of better health status (p < 0.01) measured with the EQ-VAS. Only age and employment status were associated with higher utility scores, indicating fundamental differences between these measures of health status.
Conclusions
This is the first Australian study to apply the EQ-5D-5L in a large, community sample. Overall, findings are consistent with EQ-5D-5L utility and VAS scores reported for other countries and indicate that the majority of South Australian adults report themselves in full health. When valuing health in Australian economic evaluations, the utility population norms can be used to estimate HrQOL. More generally, the EQ-VAS score may be a better measure of population health given the smaller ceiling effect and broader coverage of HrQOL dimensions. Further research is recommended to update EQ-5D-5L population norms using the Australian general population specific scoring algorithm once this becomes publically available
- …
