Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context?

BACKGROUND: Population preferences for care at the end of life can inform palliative care policy and direction. Research investigating preferences for care at the end of life has focused predominantly on the context of advanced cancer, with relatively little attention to other life-limiting illnesses that are common causes of death. OBJECTIVES: We aimed to investigate preferences for the care of older people at the end of life in three different disease contexts. The purpose was to understand if population preferences for care in the last 3 weeks of life would differ for patients dying from cancer, heart failure or dementia. METHODS: Three discrete choice experiments were conducted in Australia with a general population sample using similar methods but different end-of-life disease contexts. Some attributes were common across the three experiments and others differed to accommodate the specific disease context. Each survey was completed by a different panel sample aged ≥45 years (cancer, n = 1548; dementia, n = 1549; heart failure, n = 1003). Analysis was by separate mixed logit models. RESULTS: The most important attributes across all three surveys were costs to the patient and family, patient symptoms and informal carer stress. The probability of choosing an alternative was lowest (0.18-0.29) when any one of these attributes was at the least favourable level, holding other attributes constant across alternatives. The cancer survey explored symptoms more specifically and found patient anxiety with a higher relative importance score than the symptom attribute of pain. Dementia was the only context where most respondents preferred to not have a medical intervention to prolong life; the probability of choosing an alternative with a feeding tube was 0.40 (95% confidence interval 0.36-0.43). CONCLUSIONS: This study suggests a need for affordable services that focus on improving patient and carer well-being irrespective of the location of care, and this message is consistent across different disease contexts, including cancer, heart failure and dementia. It also suggests some different considerations in the context of people dying from dementia where medical intervention to prolong life was less desirable.

Specialist Palliative Care and Health Care Costs at the End of Life.

BACKGROUND/AIMS: The use and costs of health care rise substantially in the months prior to death, and although the use of palliative care services may be expected to lead to less costly care, the evidence is mixed. We analysed the costs of care over the last year of life and the extent to which these are associated with the use and duration of specialist palliative care (SPC) for decedents who died from cancer or another life-limiting illness. METHODS: The decedents were participants in a cohort study of older residents of the state of New South Wales, Australia. Using linked survey and administrative health data from 2007 to 2016, two cohorts were identified: n = 10,535 where the cause of death was cancer; and n = 11,179 where the cause of death was another life-limiting illness. Costs of various types were analysed with separate risk-adjusted linear regression models for the last 1, 3, 6, 9 and 12 months before death and for both cohorts. SPC was categorised according to time to death from first contact with the service as 1-7 days, 7-30 days, 30-180 days and more than 180 days. RESULTS: SPC use was higher among the cancer cohort (30.0%) relative to the non-cancer cohort (4.8%). The mean costs over the final year of life were AU$55,037 (SD 45,059) for the cancer cohort and AU$35,318 (SD 41,948) for the non-cancer cohort. Earlier use of SPC was associated with higher costs over the last year of life but lower costs in the last 1 and 3 months for both cohorts. Initiating SPC use more than 180 days before death was associated with a mean difference relative to the no SPC group of AU$15,590 (95% CI 10,617 to 20,562) and AU$13,739 (95% CI 733 to 26,746) over the last year of life for those dying from cancer and another illness, respectively. The same differences over the last month of life were - AU$2810 (95% CI -  3945 to -  1676) and - AU$4345 (95% CI -  6625 to - 2066). Admitted hospital care was the major driver of costs, with longer SPC associated with lower rates of death in hospital for both cohorts. CONCLUSION: Early initiation of SPC was associated with higher costs over the last year of life and lower costs over the last months of life. This was the case for both the cancer and non-cancer cohorts, and appeared to be largely attributed to reduced hospitalisation. Although further investigation is required, our results suggest that expanding the availability of SPC services to provide more equitable access could enable patients to spend more time at their usual place of residence, reduce pressure on inpatient services and facilitate death at home when that is preferred.

Evaluation of the Victorian Healthy Homes Program: protocol for a randomised controlled trial.

INTRODUCTION: The evaluation of the Victorian Healthy Homes Program (VHHP) will generate evidence about the efficacy and cost-effectiveness of home upgrades to improve thermal comfort, reduce energy use and produce health and economic benefits to vulnerable households in Victoria, Australia. METHODS AND ANALYSIS: The VHHP evaluation will use a staggered, parallel group clustered randomised controlled trial to test the home energy intervention in 1000 households. All households will receive the intervention either before (intervention group) or after (control group) winter (defined as 22 June to 21 September). The trial spans three winters with differing numbers of households in each cohort. The primary outcome is the mean difference in indoor average daily temperature between intervention and control households during the winter period. Secondary outcomes include household energy consumption and residential energy efficiency, self-reported respiratory symptoms, health-related quality of life, healthcare utilisation, absences from school/work and self-reported conditions within the home. Linear and logistic regression will be used to analyse the primary and secondary outcomes, controlling for clustering of households by area and the possible confounders of year and timing of intervention, to compare the treatment and control groups over the winter period. Economic evaluation will include a cost-effectiveness and cost-benefit analysis. ETHICS AND DISSEMINATION: Ethical approval was received from Victorian Department of Human Services Human Research Ethics Committee (reference number: 04/17), University of Technology Sydney Human Research Ethics Committee (reference number: ETH18-2273) and Australian Government Department of Veterans Affairs. Study results will be disseminated in a final report and peer-reviewed journals. TRIAL REGISTRATION NUMBER: ACTRN12618000160235.

Valuing End-of-Life Care for Older People with Advanced Cancer: Is Dying at Home Important?

BACKGROUND: Most health care systems are facing the challenge of providing health services to support the increasing numbers of older people with chronic life-limiting conditions at the end of life. Many policies focus primarily on increasing the proportion of deaths at home. OBJECTIVES: This study aims to investigate preferences for care throughout the latter stages of a life-limiting illness, particularly the importance of location of care, location of death, and the use of life-sustaining measures. It focuses on preferences for the care of an older person with advanced cancer in the last 3 weeks of life. METHODS: A survey using discrete choice experiment (DCE) methods was completed online by a general population sample of 1548 Australians aged 45 years and over. The experiment included 12 attributes, and each respondent completed 11 choice sets. Analysis was by a mixed logit model and latent class analysis (LCA). RESULTS: The most important attributes influencing care preferences were cost, patient anxiety, pain control, and carer stress (relative importance scores 0.21, 0.19, 0.14, and 0.14, respectively), with less importance given to place of care and place of death (relative importance scores 0.03 and 0.01). The model predicted that 42% would consider receiving most care in hospital better than at home (58%) holding the levels of other attributes constant across the alternatives, while 42% would consider death in hospital better than at home (58%). Three population segments with different preferences were identified by the LCA, the largest (46.5%) prioritised how the patient and carer felt as well as the pain control achieved, the next largest (28.1%) prioritised cost, and the smallest segment (25.4%) prioritised a single room when an inpatient. CONCLUSIONS: This study shows that investment in services to support people at the end of life would be better targeted toward programmes that improve patient and carer wellbeing irrespective of the location of care and death.

Choosing a Doctor: Does Presentation Format Affect the Way Consumers Use Health Care Performance Information?

BACKGROUND: Choosing a new health service provider can be difficult and is dependent on the type and clarity of the information available. This study examines if the presentation of service quality information affects the decisions of consumers choosing a general medical practice. OBJECTIVES: The aim was to examine the impact of presentation format on attribute level interpretation and relative importance. METHODS: A discrete choice experiment eliciting preferences for a general medical practice was conducted using four different presentation formats for service quality attributes: (1) frequency and percentage with an icon array, (2) star ratings, (3) star ratings with a text benchmark, and (4) percentage alone. A total of 1208 respondents from an online panel were randomised to see two formats, answering nine choices for each, where one was a dominated choice. Logistic regression was used to assess the impact of presentation format on the probability of choosing a dominated alternative. A generalised multinomial logit model was used to estimate the relative importance of the attribute levels. RESULTS: The probability of incorrectly choosing a dominated alternative was significantly higher when the quality information was presented as a percentage relative to a frequency with icon array, star rating or bench-marked star rating. Preferences for a practice did not differ significantly by presentation format, nor did the probability of finding the information difficult to understand. CONCLUSIONS: Quantitative health service quality information will be more useful to consumers if presented by combining the numerical information with a graphic, or using a star rating if appropriate for the context.

Satisfaction with nursing education, job satisfaction, and work intentions of new graduate nurses.

BACKGROUND AND OBJECTIVE: In the context of predictions of future shortages of nurses, retaining new graduate nurses in the nursing workforce is essential to ensure sufficient nurses in the future. This paper investigates the links between satisfaction with nursing education and job satisfaction, and job dissatisfaction and intentions to leave a nursing job. DESIGN AND DATA SOURCES: It uses survey data from a cohort study of nursing students recruited through two Australian universities and followed after graduation and workforce entry. METHOD: Structural equation modeling (SEM) was used to simultaneously estimate the impact of educational satisfaction (work preparation component) on job satisfaction and the impact of job satisfaction on the expectation of leaving the current job. RESULTS: Two job satisfaction sub-scales were identified: 1) work environment satisfaction and 2) work hours and wages satisfaction. Work preparation satisfaction was significantly and positively associated with both job satisfaction scales but only work environment satisfaction was significantly associated with the expectation to stay in the job; a one standard deviation increase in work environment satisfaction was associated with a 13.5 percentage point reduction in the probability of expecting to leave. The estimated effect of satisfaction with education on expecting to leave, occurring indirectly through job satisfaction, was small (reducing the probability by less than 3 percentage points for a 1 point increase in work preparation satisfaction). Participating in a graduate transition program had the largest effect, reducing the probability of expecting to leave by 26 percentage points, on average. CONCLUSIONS: The study results suggest policies which focus on improving satisfaction with the work environment would be more effective at retaining nurses early in their career than improvements to conditions such as work hours and wages. Investment in new graduate transition programs would potentially have the largest impact on retention.

Development and testing of two implementation tools to measure components of professional pharmacy service fidelity.

RATIONALE, AIMS AND OBJECTIVES: There is a need to evaluate both service process and implementation outcomes as professional services are being implemented into pharmacy practice. Fidelity is an implementation outcome, which may be used for service optimization, by associating service components to patient outcomes, as well as use in process evaluation. The objective of this study was to develop tools to measure components of fidelity, specifically, an adherence index (adherence of the service provider to the elements of the service) and a patient responsiveness scale for the professional pharmacy service, medication review with follow-up. METHODS: The procedure described by DeVellis was followed to develop the tools. An expert panel was used to create items and establish content validity. Primary data were collected from 190 service provider pharmacists from 128 pharmacies across 11 provinces of Spain using Spanish version tools as part of an ongoing implementation study (English translations appended to the online version of the article as supplementary material). An initial assessment of item functionality was performed using descriptive statistics and item discrimination for both tools. The patient responsiveness scale's internal consistency was confirmed by calculating Cronbach's alpha coefficient and inter-item correlations. In addition, for the patient responsiveness scale, the number of factors to retain was based on Kaiser criterion, parallel analysis and Cattell's scree test and the number of items was optimized as guided by iterative exploratory factor analysis (EFA). RESULTS: Acceptability of both tools was high. An adherence index of 39 items was developed. After five EFA iterations, four items were removed, resulting in a reliable, 12-item, two-factor patient responsiveness scale, explaining 53.9% of total variance. CONCLUSIONS: Two tools for measuring implementation fidelity, an adherence index and a patient responsiveness scale, have been developed and tested. Future assessment, in particular to establish criterion validity, is recommended.

Community preferences in general practice: important factors for choosing a general practitioner.

BACKGROUND: Understanding the important factors for choosing a general practitioner (GP) can inform the provision of consumer information and contribute to the design of primary care services. OBJECTIVE: To identify the factors considered important when choosing a GP and to explore subgroup differences. DESIGN: An online survey asked about the respondent's experience of GP care and included 36 questions on characteristics important to the choice of GP. PARTICIPANTS: An Australian population sample (n = 2481) of adults aged 16 or more. METHODS: Principal components analysis identified dimensions for the creation of summated scales, and regression analysis was used to identify patient characteristics associated with each scale. RESULTS: The 36 questions were combined into five scales (score range 1-5) labelled: care quality, types of services, availability, cost and practice characteristics. Care quality was the most important factor (mean = 4.4, SD = 0.6) which included questions about technical care, interpersonal care and continuity. Cost (including financial and time cost) was also important (mean = 4.1, SD = 0.6). The least important factor was types of services (mean = 3.3, SD = 0.9), which covered the range of different services provided by or co-located with the practice. Frequent GP users and females had higher scores across all 5 scales, while the importance of care quality increased with age. CONCLUSIONS: When choosing a GP, information about the quality of care would be most useful to consumers. Respondents varied in the importance given to some factors including types of services, suggesting the need for a range of alternative primary care services.

Computer modeling with randomized-controlled trial data informs the development of person-centered aged care homes.

AIM: To answer questions on the essential components (services, operations and resources) of a person-centered aged care home (iHome) using computer simulation. MATERIALS & METHODS: iHome was developed with AnyLogic software using extant study data obtained from 60 Australian aged care homes, 900+ clients and 700+ aged care staff. Bayesian analysis of simulated trial data will determine the influence of different iHome characteristics on care service quality and client outcomes. Interim results: A person-centered aged care home (socio-cultural context) and care/lifestyle services (interactional environment) can produce positive outcomes for aged care clients (subjective experiences) in the simulated environment. CONCLUSION: Further testing will define essential characteristics of a person-centered care home.

Factors affecting general practitioner charges and Medicare bulk-billing: results of a survey of Australians.

OBJECTIVE: To identify factors affecting bulk-billing by general practitioners in Australia. DESIGN, PARTICIPANTS AND SETTING: A community-based survey was administered to Australians aged 16 years or older in July 2013 via an online panel. Survey questions focused on patient characteristics, visit characteristics, practice characteristics. MAIN OUTCOME MEASURES: Factors associated with GP bulk-billing. RESULTS: 2477 respondents completed the survey, of whom 2064 (83.33%) reported that the practice that they went to for their most recent GP visit bulk billed some or all patients. Overall, 1763 respondents (71.17%) reported that their most recent GP visit was bulk billed. Taking into account the duration of visits and the corresponding Medicare Benefits Schedule rebate, the mean out-of-pocket cost for those who were not bulk billed was $34.09. RESULTS of a multivariate logistic regression analysis suggest that the odds of being bulk billed was negatively associated with larger practice size, respondents having had an appointment for their visit, higher household income and inner or outer regional area of residence. It was positively associated with the presence of a chronic disease, being a concession card holder and having private health insurance. There was no association between bulk-billing and duration of GP visit, age or sex. CONCLUSIONS: Our results indicate that there are associations between patient characteristics and bulk-billing, and between general practice characteristics and bulk-billing. This suggests that caution is needed when considering changes to GP fees and Medicare rebates because of the many possible paths by which patients' access to services could be affected. Our results do not support the view that bulk-billing is associated with shorter consultation times.

The physical functioning and mental health of informal carers: evidence of care-giving impacts from an Australian population-based cohort.

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care-giving. This study investigated the impact of care-giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care-giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score-matched non-carers. Health was self-assessed, measured with the SF-36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care-giving was classified as non-carer, low (<5 hours/week), moderate (5-19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care-giving, covariates (including work, family and socio-demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care-giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40-64 years, there was a 17-point decline in PF (P = 0.009) and a 14-point decline in MH (P < 0.0001) after 2 years for female high caregivers working full-time and 9.3 point improvement (P = 0.02) for non-working male high caregivers. Change was not significant for non-carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care-giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.

PerCEN: a cluster randomized controlled trial of person-centered residential care and environment for people with dementia.

BACKGROUND: There is good evidence of the positive effects of person-centered care (PCC) on agitation in dementia. We hypothesized that a person-centered environment (PCE) would achieve similar outcomes by focusing on positive environmental stimuli, and that there would be enhanced outcomes by combining PCC and PCE. METHODS: 38 Australian residential aged care homes with scope for improvement in both PCC and PCE were stratified, then randomized to one of four intervention groups: (1) PCC; (2) PCE; (3) PCC +PCE; (4) no intervention. People with dementia, over 60 years of age and consented were eligible. Co-outcomes assessed pre and four months post-intervention and at 8 months follow-up were resident agitation, emotional responses in care, quality of life and depression, and care interaction quality. RESULTS: From 38 homes randomized, 601 people with dementia were recruited. At follow-up the mean change for quality of life and agitation was significantly different for PCE (p = 0.02, p = 0.05, respectively) and PCC (p = 0.0003, p = 0.002 respectively), compared with the non-intervention group (p = 0.48, p = 0.93 respectively). Quality of life improved non-significantly for PCC+PCE (p = 0.08), but not for agitation (p = 0.37). Improvements in care interaction quality (p = 0.006) and in emotional responses to care (p = 0.01) in PCC+PCE were not observed in the other groups. Depression scores did not change in any of the groups. Intervention compliance for PCC was 59%, for PCE 54% and for PCC+PCE 66%. CONCLUSION: The hypothesis that PCC+PCE would improve quality of life and agitation even further was not supported, even though there were improvements in the quality of care interactions and resident emotional responses to care for some of this group. The Australian New Zealand Clinical Trials Registry Number is ACTRN 12608000095369.

Providing Informal Care in Terminal Illness: An Analysis of Preferences for Support Using a Discrete Choice Experiment.

BACKGROUND: The trend for terminally ill patients to receive much of their end-of-life care at home necessitates the design of services to facilitate this. Care at home also requires that informal care be provided by family members and friends. This study investigated informal carers' preferences for support services to aid the development of end-of-life health care services. METHODS: This cross-sectional study used 2 discrete choice experiments to ascertain the preferences of carers supporting patients with different levels of care need, determined by the assistance needed with personal care and labeled High Care (HC) and Low Care (LC). The sample included 168 informal carers of people receiving palliative care at home from 2 palliative care services in Sydney, Australia. Data were collected in face-to-face interviews; carers chose between 2 hypothetical plans of support services and their current services. Data were analyzed with generalized multinomial logit models that were used to calculate the impact of each attribute on the probability of a carer choosing a service plan. RESULTS: Preferred support included nursing services; the probability of choosing a plan increased significantly if it included nurse home visits and phone advice (P < 0.001). HC carers also wanted doctor home visits, home respite, and help with personal care (P < 0.05), and LC carers wanted help with household tasks, transport, and a case coordinator (P < 0.001). On average, both groups of carers preferred their current services, but this varied with characteristics of the carer and the caregiving situation. CONCLUSIONS: The most valued services are those that support carers in their caregiving role; however, supportive care preferences vary with the different circumstances of patients and carers.

Educational preparation for clinical nursing: the satisfaction of students and new graduates from two Australian universities.

BACKGROUND: Attrition rates among young and newly registered nurses are high; the capacity of nurse education programmes to prepare nurses for their professional role and the extent to which they are supported during the transition from student to registered nurse may be important factors. OBJECTIVES: This paper examines nursing student and recent graduate satisfaction with their education, focusing on their preparation for work. DESIGN: A descriptive cohort design was used, combining qualitative and quantitative methods to measure and interpret satisfaction. SETTING: Two Australian universities, one urban and one regional. PARTICIPANTS: 530 undergraduate nursing students and recent graduates from the Bachelor of Nursing programmes at the two universities. METHODS: Data were collected via an online survey. Satisfaction with the programmes was measured with closed format questions covering different aspects of the programmes and a single open ended question. Responses were compared between older and younger respondents and between graduates and students at different stages of the programme. RESULTS: Older students were more dissatisfied than younger students with the amount and type of training and their preparation for nursing work. First year students reported the highest levels of satisfaction, and third year students the lowest. The majority of graduates and third year students thought that the programme only partly prepared them for work in nursing. The free text comments particularly highlighted concerns with the amount and quality of clinical education. CONCLUSIONS: Programmes need to take account of the learning requirements of students to maximise the integration of theory and skill development in hospital environments with limited staffing and resources. The clinical environment and support received impact on the quality of learning and satisfaction of student nurses. Students who are dissatisfied with their educational and clinical experiences may choose to change their career direction.

Effect of a pharmacist intervention on asthma control. A cluster randomised trial.

INTRODUCTION: Achievement and maintenance of good asthma control is a major objective in asthma management. However, asthma control in many patients is suboptimal, due to improper use of asthma medications and non-adherence. The aim of this study was to evaluate the effect of a pharmacist intervention on asthma control in adult patients. METHODS: A 6-month cluster randomized controlled trial was undertaken with allocation of community pharmacies to intervention or control group. Adult asthma patients in the intervention group received a protocol-based intervention addressing individual needs related to asthma control, inhaler technique and medication adherence. Patients in the control group received usual care. Main variables were measured at baseline, 3 and 6 months. RESULTS: 336 patients completed the study, 150 in the control group and 186 in the intervention group. The intervention resulted in enhanced asthma control: Patients receiving the intervention had an Odds ratio of 3.06 (95% CI:1.63-5.73; p < 0.001) of having controlled asthma six months later. In the intervention group mean ACQ scores significantly improved [0.66 points (SD: 0.78); p < 0.001] and the number of controlled asthma patients increased by 30.1% (p < 0.001) after 6 months. The intervention also resulted in improved medication adherence (by 40.3%, p < 0.001) and inhaler technique (by 56.2%, p < 0.001). No significant changes for any of these variables were observed in the control group. CONCLUSION: The AFasma study focused on the important outcomes of asthma management, and showed that through the designed intervention, community pharmacists can increase controlled asthma patients compared to usual care. Trial registration NCT01085474.

Preferences for support services among adolescents and young adults with cancer or a blood disorder: a discrete choice experiment.

BACKGROUND: Life-threatening illnesses in young people are traumatic for patients and their families. Support services can help patients and families deal with various non-medical impacts of diagnosis, disease and treatment. The aim of this study was to determine which types of support are most valued by adolescents and young adults (AYA) with cancer or blood disorders and their families. METHOD: A discrete choice experiment (DCE). Separate experiments were conducted with AYA and their carers. RESULTS: Completed surveys were returned by 83 patients and 78 carers. AYA preferred emotional support for themselves (either by counsellors and/or peers), emotional support for their family, financial support and assistance returning to school/work over services relating to cultural and spiritual needs. Covariate analysis indicated female AYA were more likely than males to prefer emotional support, while males were more likely to prefer assistance returning to work/school. Carers preferred emotional support for their AYA and assistance returning to school/work. Like AYA, they were indifferent about services relating to cultural and spiritual needs. CONCLUSION: Providing the types of support services that people prefer should maximise effectiveness. This study suggests that AYA patients require support services that included financial aid, assistance returning to work/study, emotional support for themselves and for their family.

Repeatability of the six-minute walk test and relation to physical function in survivors of a critical illness.

BACKGROUND: The Six-Minute Walk Test (6MWT) is widely used as an outcome measure in exercise rehabilitation. However, the repeatability of the 6MWT performed at home in survivors of a critical illness has not been evaluated. OBJECTIVE: The purpose of this study was to evaluate, in survivors of a critical illness: (1) the repeatability of the 6MWT performed at home, (2) the effect on estimates of change in functional exercise capacity if only one 6MWT was performed at follow-up assessments, and (3) the relationship between the physical functioning (PF) score of the 36-Item Short-Form Health Survey questionnaire (SF-36) and the 6MWT. DESIGN: Repeated measures of the 6MWT and SF-36 were obtained. METHODS: Eligible participants had an intensive care unit (ICU) length of stay of ≥48 hours and were mechanically ventilated for ≥24 hours. Two 6MWTs and the SF-36 were conducted in participants' homes at weeks 1, 8, and 26 after hospital discharge. RESULTS: One hundred seventy-three participants completed the study. The participants had a mean age of 57 years (SD=16), a mean Acute Physiology and Chronic Health Evaluation II (APACHE II) score on admission of 19 (SD=10), a mean ICU length of stay of 9 days (SD=8), and a mean mechanical ventilation time of 140 hours (SD=137). Of the 173 participants, 110 performed two 6MWTs at weeks 1, 8, and 26. There were significant mean increases in 6-minute walk distance in the second test of 15 m (P<.0001) at week 1, 13 m (P<.0001) at week 8, and 9 m (P=.04) at week 26. If only one 6MWT was performed at weeks 8 and 26, the estimate of change in 6-minute walk distance from week 1 was 19 m less (P<.001) at both weeks 8 and 26. There was a moderate to strong correlation between SF-36 PF score and 6-minute walk distance at each assessment (week 1: r=.62, P<.001; week 8: r=.55, P<.001; and week 26: r=.47, P<.001). LIMITATIONS: Some study participants were unable to perform a second 6MWT, and these participants may have differed in important aspects of function compared with those individuals who completed two 6MWTs. CONCLUSIONS: In survivors of a critical illness, the 6MWT in the home environment should be performed twice at each assessment to give an accurate reflection of change in exercise capacity over time. The SF-36 PF score was a strong indicator of 6-minute walk distance in early recovery from a critical illness.

Health-related quality of life and physical recovery after a critical illness: a multi-centre randomised controlled trial of a home-based physical rehabilitation program.

INTRODUCTION: Significant physical sequelae exist for some survivors of a critical illness. There are, however, few studies that have examined specific interventions to improve their recovery, and none have tested a home-based physical rehabilitation program incorporating trainer visits to participants' homes. This study was designed to test the effect of an individualised eight-week home-based physical rehabilitation program on recovery. METHODS: A multi-centre randomised controlled trial design was used. Adult intensive care patients (length of stay of at least 48 hours and mechanically ventilated for 24 hours or more) were recruited from 12 Australian hospitals between 2005 and 2008. Graded, individualised endurance and strength training intervention was prescribed over eight weeks, with three physical trainer home visits, four follow-up phone calls, and supported by a printed exercise manual. The main outcome measures were blinded assessments of physical function; SF-36 physical function (PF) scale and six-minute walk test (6MWT), and health-related quality of life (SF-36) conducted at 1, 8 and 26 weeks after hospital discharge. RESULTS: Of the 195 participants randomised, 183, 173 and 161 completed the 1, 8 and 26 weeks assessments, respectively. Study groups were similar at Week 1 post-hospital; for the intervention and control groups respectively, mean norm-based PF scores were 27 and 29 and the 6MWT distance was 291 and 324 metres. Both groups experienced significant and clinically important improvements in PF scores and 6MWT distance at 8 weeks, which persisted at 26 weeks. Mixed model analysis showed no significant group effects (P = 0.84) or group by time interactions (P = 0.68) for PF. Similar results were found for 6MWT and the SF-36 summary scores. CONCLUSIONS: This individualised eight-week home-based physical rehabilitation program did not increase the underlying rate of recovery in this sample, with both groups of critically ill survivors improving their physical function over the 26 weeks of follow-up. Further research should explore improving effectiveness of the intervention by increasing exercise intensity and frequency, and identifying individuals who would benefit most from this intervention. TRIAL REGISTRATION: Australia and New Zealand Clinical Trials Register ACTRN12605000166673.

Informal care and home-based palliative care: the health-related quality of life of carers.

Health is an important factor in the capacity of family and friends (informal carers) to continue providing care for palliative care patients at home. This study investigates associations between the health-related quality of life (HRQOL) of current informal carers and characteristics of the carers and their caregiving situation, in a sample of Australian carers of palliative care patients. The cross-sectional study used the Short Form-36 Health Survey to measure HRQOL. It found carers to have better physical health and worse mental health than the general population. Of 178 carers, 35% reported their health to be worse than it was one year ago. Multiple regression analyses found that the HRQOL of carers whose health had deteriorated in the previous year was associated with the patient's care needs but not the carer's time input, unlike the carers reporting stable health. Clinicians caring for palliative care patients should be alert to the potential health impairments of informal carers and ensure that they are adequately supported in their caregiving role and have access to appropriate treatment and preventive health care.