General practitioners (GPs) and end-of-life care: a qualitative study of Australian GPs and specialist palliative care clinicians.

OBJECTIVES: General practitioners (GPs) are well placed to be involved in end-of-life care for patients with life-limiting illnesses. However, differing views exist regarding their role. This study aims to explore the views of GPs and specialist palliative care clinicians (SPCCs) on the role that GPs should play in the planning and provision of end-of-life care and important barriers and facilitators to GPs' involvement in end-of-life care including suggestions for improvement. METHODS: Qualitative description methodology using semistructured interviews of 11 GPs and 10 SPCCs. RESULTS: The participants identified two key roles that GPs should play in the planning and provision of end-of-life care: care planning and referring to palliative care services and being the primary clinician in charge of patient care. GPs and SPCCs expressed similar views; however, a significant proportion of the GP participants were not actively involved in end-of-life care. Factors affecting GPs' involvement in end-of-life care included: (1) GP and practice factors including continuity of care, long-term relationships with patients, knowledge and skills in end-of-life care, resource limitations and work patterns; (2) communication and collaboration between GPs and the acute healthcare system and (3) communication and collaboration between GPs and SPCCs. CONCLUSION: GPs have a key role in the planning and provision of end-of-life care. GPs could be encouraged in this role by providing them with education and practical experience in end-of-life care, making changes to remuneration structure, formalised arrangements for shared care and encouraging continuity of care and developing long-term relationship with their patients.

Systematic review of general practice end-of-life symptom control.

BACKGROUND: End of life care (EoLC) is a fundamental role of general practice, which will become more important as the population ages. It is essential that general practice's role and performance of at the end of life is understood in order to maximise the skills of the entire workforce. OBJECTIVE: To provide a comprehensive description of the role and performance of general practitioners (GPs) and general practice nurses (GPNs) in EoLC symptom control. METHOD: Systematic literature review of papers from 2000 to 2017 were sought from Medline, PsycINFO, Embase, Joanna Briggs Institute and Cochrane databases. RESULTS: From 6209 journal articles, 46 papers reported GP performance in symptom management. There was no reference to the performance of GPNs in any paper identified. Most GPs expressed confidence in identifying EoLC symptoms. However, they reported lack of confidence in providing EoLC at the beginning of their careers, and improvements with time in practice. They perceived emotional support as being the most important aspect of EoLC that they provide, but there were barriers to its provision. GPs felt most comfortable treating pain, and least confident with dyspnoea and depression. Observed pain management was sometimes not optimal. More formal training, particularly in the use of opioids was considered important to improve management of both pain and dyspnoea. CONCLUSIONS: It is essential that GPs receive regular education and training, and exposure to EoLC from an early stage in their careers to ensure skill and confidence. Research into the role of GPNs in symptom control needs to occur.

Using intuition or a formal palliative care needs assessment screening process in general practice to predict death within 12 months: A randomised controlled trial.

BACKGROUND: Population ageing will lead to more deaths with an uncertain trajectory. Identifying patients at risk of dying could facilitate more effective care planning. AIM: To determine whether screening for likely death within 12 months is more effective using screening tools or intuition. DESIGN: Randomised controlled trial of screening tools (Surprise Question plus the Supportive and Palliative Care Indicators Tool for Surprise Question positive patients) to predict those at risk of death at 12 months compared with unguided intuition (clinical trials registry: ACTRN12613000266763). SETTING/PARTICIPANTS: Australian general practice. A total of 30 general practitioners (screening tool = 12, intuition = 18) screened all patients ( n = 4365) aged ≥70 years seen at least once in the last 2 years. RESULTS: There were 142 deaths (screening tool = 3.1%, intuition = 3.3%; p = 0.79). General practitioners identified more at risk of dying using Surprise Question (11.8%) than intuition (5.4%; p = 0.01), but no difference with Surprise Question positive then Supportive and Palliative Care Indicators Tool (5.1%; p = 0.87). Surprise Question positive predicted more deaths (53.2%, intuition = 33.7%; p = 0.001), but Surprise Question positive/Supportive and Palliative Care Indicators Tool predictions were similar (5.1%; p = 0.87 vs intuition). There was no difference in proportions correctly predicted to die (Surprise Question = 1.6%, intuition = 1.1%; p = 0.156 and Surprise Question positive/Supportive and Palliative Care Indicators Tool = 1.1%; p = 0.86 vs intuition). Screening tool had higher sensitivity and lower specificity than intuition, but no difference in positive or negative predictive value. CONCLUSION: Screening tool was better at predicting actual death than intuition, but with a higher false positive rate. Both were similarly effective at screening the whole cohort for death. Screening for possible death is not the best option for initiating end-of-life planning: recognising increased burden of illness might be a better trigger.

Prevalence and risk factors of sarcopenia among adults living in nursing homes.

OBJECTIVES: Sarcopenia is a progressive loss of skeletal muscle and muscle function, with significant health and disability consequences for older adults. We aimed to evaluate the prevalence and risk factors of sarcopenia among older residential aged care adults using the European Working Group on Sarcopenia in Older People (EWGSOP) criteria. STUDY DESIGN: A cross-sectional study design that assessed older people (n=102, mean age 84.5±8.2 years) residing in 11 long-term nursing homes in Australia. MAIN OUTCOME MEASUREMENTS: Sarcopenia was diagnosed from assessments of skeletal mass index by bioelectrical impedance analysis, muscle strength by handheld dynamometer, and physical performance by the 2.4m habitual walking speed test. Secondary variables where collected to inform a risk factor analysis. RESULTS: Forty one (40.2%) participants were diagnosed as sarcopenic, 38 (95%) of whom were categorized as having severe sarcopenia. Univariate logistic regression found that body mass index (BMI) (Odds ratio (OR)=0.86; 95% confidence interval (CI) 0.78-0.94), low physical performance (OR=0.83; 95% CI 0.69-1.00), nutritional status (OR=0.19; 95% CI 0.05-0.68) and sitting time (OR=1.18; 95% CI 1.00-1.39) were predictive of sarcopenia. With multivariate logistic regression, only low BMI (OR=0.80; 95% CI 0.65-0.97) remained predictive. CONCLUSIONS: The prevalence of sarcopenia among older residential aged care adults is very high. In addition, low BMI is a predictive of sarcopenia.

The Effect of Methylphenidate on Fatigue in Advanced Cancer: An Aggregated N-of-1 Trial.

CONTEXT: Fatigue is common in life-limiting cancer. Methylphenidate (MPH), a psychostimulant, may be a useful therapy. Gathering evidence in patients with advanced cancer can be challenging. OBJECTIVES: To determine if MPH improves cancer-related fatigue in people with advanced cancer. METHODS: N-of-1 trials are multicycle, double-blind, randomized, controlled crossover trials using standardized measures of effect in individuals. They are normally used to assess treatment effects in individuals. Aggregated N-of-1 trials from participants with end-stage cancer suffering fatigue were used to assess the group effect of MPH, producing an estimate of equivalent power to a parallel-group randomized controlled trial (RCT) but requiring less than half of the sample size. Up to three cycles of MPH 5 mg twice daily (three days) vs. identical placebo (three days) capsules were offered to participants. Primary outcome was improvement in fatigue as measured by the Functional Assessment of Chronic Illness Therapy-Fatigue Scale and the Wu Cancer Fatigue Scale. Analysis used Bayesian statistical methods using intention-to-treat principles. RESULTS: Forty-three participants completed 84 cycles of MPH and placebo in random order, exceeding sample size estimates. Overall, MPH did not improve fatigue (mean difference 3.2; 95% credible interval -2.0, 9.0; posterior probability of favorable effect 0.890). Eight participants showed important improvement, and one participant showed important worsening of fatigue on MPH. There were no features that distinguished participants whose fatigue responded to MPH compared with those who did not. CONCLUSION: MPH does not improve fatigue in the population of patients with end-stage cancer. Aggregated N-of-1 trial methodology is feasible and produces population-based sample estimates with less than half the sample size required for the equivalent parallel-group RCT. It also identified individuals who did and did not respond to MPH, which is a feature difficult to achieve in a standard RCT. The study was registered with the Australian Clinical Trials Registry (12609000794202).

Assessing sarcopenic prevalence and risk factors in residential aged care: methodology and feasibility.

BACKGROUND: Sarcopenia is a significant geriatric syndrome with both health care expenditure and personal burden. Most recently, the European Working Group in Sarcopenia in Older Adults has established a consensus definition and assessment criteria for sarcopenia that includes a below-normal muscle mass and muscle function (either or both of below-normal muscle strength and physical performance). Using these criteria, work is needed to identify the prevalence and risk factors among the old, and those most susceptible to sarcopenia, the very old. This manuscript describes the recruitment and data collection methodology, and direct burden to participants, among a very old cohort residing in a residential aged care (RAC) setting. METHODS: Eleven RAC facilities participated in the study. Potential participants were identified by the facility service manager and then randomised into the study. All participants gave self or substitute decision maker consent. Participants undertook a single one on one assessment that included measures of sarcopenia, functional capacity, cognitive and nutritional health, falls, activity, facility and hospital history, physical activity and assessment burden. A sub-study of physical activity and sedentary behaviours measured by activPAL3™ inclinometer was also conducted. RESULTS: Of 709 residents, 328 were ineligible to participate. Two hundred and seventy-three residents were randomised to the study and 102 gave informed or substitute decision maker consent. Participants were 84.5 ± 8.2 years of age and had been in care for 1,204.2 ± 1,220.1 days. The groups need for care was high (Aged Care Funding Instrument score of 2.6 ± 1.7) and they had a below-normal functional (Short Physical Performance Battery summery score of 3.5 ± 2.4). The larger percentage of participants had no depression and normal cognitive capacity. A total of 33 residents participated in the activPAL study. Each assessment took an average of 27.0 ± 7.0 min, with a low assessment burden reported by participants. CONCLUSIONS: The successful assessment of sarcopenia and physical activity in a RAC setting is labour intensive to establish, but feasible to conduct. Low recruitment numbers and the restrictive exclusion criteria, may have limited the accuracy of this work. However, this work is a primary step in establishing the level of sarcopenia and its risk factors for those in end-of-life care.

Promoting independence in frail older people: a randomised controlled trial of a restorative care service in New Zealand.

BACKGROUND: frail older people often require tailored rehabilitation in order to remain at home, especially following a period of hospitalisation. Restorative care services aim to enhance an older person's ability to remain improve physical functioning, either at home or in residential care but evidence of their effectiveness is limited. OBJECTIVE: to evaluate the effectiveness of a restorative care service on institutional-free survival and health outcomes in frail older people referred for needs assessment in New Zealand. METHODS: a randomised controlled trial of restorative care or usual care in 105 older people at risk of permanent residential who were follow-up over 24 months. The restorative care service was delivered in short-stay residential care facilities and at participants' residences with the aim of reducing the requirement for permanent residential care. It included a comprehensive geriatric assessment and care plan developed and delivered, initially by a multi-disciplinary team and subsequently by home care assistants. RESULTS: compared with usual care, there was a non-significant absolute risk reduction of 14.3% for death or permanent residential care (8.8% for residential care and 7.2% for death alone) for the restorative care approach. There was no difference in levels of burden among caregivers. CONCLUSIONS: restorative care models that utilise case management and multi-disciplinary care may positively impact on institutional-free survival for frail older people without adversely impacting on the health of caregivers.

Aggregated n-of-1 trials of central nervous system stimulants versus placebo for paediatric traumatic brain injury--a pilot study.

BACKGROUND: In 2006 there were 432,700 people in Australia who had acquired brain injury (ABI) with some limitation of activities; 90% of these were traumatic brain injuries (TBIs) and nearly a third sustained injury below age 15 years. One to four years post injury, 20% to 46% of children with traumatic brain injury (TBI) have clinically significant disorders of attention. There is controversy as to whether central nervous system (CNS) stimulants can be an effective method of treating these.Objectives were to determine the efficacy of CNS stimulants for children with TBI, and to calculate the sample size for a larger trial using the Conners' 3 Parent Rating Scales Score as the primary endpoint. METHODS: Pilot series of aggregated prospective randomised, double-blind, n-of-1 trials of stimulant versus placebo within individual patients. SETTING: tertiary children's public hospital. PARTICIPANTS: ten children aged 6 to 16 years more than 12 months post TBI with attention, concentration and behavioral difficulties on stimulants. INTERVENTIONS: Three cycles of methylphenidate or dexamphetamine orally at doses titrated by physician compared to placebo. MAIN OUTCOME MEASURES: Conners 3 Parent (Conners 3-P) and Teacher (Conners 3-T) Rating Scales (Global Index), Behaviour Rating Inventory of Executive Function (BRIEF) and Eyberg Child Behaviour Inventory (ECBI). RESULTS: Five of ten patients completed the study. Data from 18 completed cycles from seven patients were analysed. The posterior mean difference between stimulant and placebo scores for the Conners 3-PS (Global Index) was 2.3 (SD 6.2; 95% credible region -1.0 to 6.1; posterior probability that this mean difference was greater than zero was 0.92), and for the Conners 3-T (Global Index) the posterior mean difference was 5.9 (SD 4.5; 95% credible region -3.1 to 14.9; posterior probability 0.93). Posterior mean differences suggest improvement in behaviour and executive function and a decrease in number and intensity of child behaviour problems when taking stimulants compared to placebo. Taken together these data are suggestive of a small benefit at group level. CONCLUSIONS: In this pilot study, there was sufficient evidence that stimulants may be useful in management of behavioral and cognitive sequelae following TBI, to warrant a larger trial. TRIAL REGISTRATION: he trial was registered with the Australian and New Zealand Clinical Trials Registry: registration number ACTRN12609000873224.

Objectively measured activity patterns among adults in residential aged care.

OBJECTIVES: To determine the feasibility of using the activPAL3(TM) activity monitor, and, to describe the activity patterns of residential aged care residents. DESIGN: Cross-sectional. SETTING: Randomly selected aged care facilities within 100 km of the Gold Coast, Queensland, Australia. PARTICIPANTS: Ambulatory, older (≥60 years) residential aged care adults without cognitive impairment. MEASUREMENTS: Feasibility was assessed by consent rate, sleep/wear diary completion, and through interviews with staff/participants. Activity patterns (sitting/lying, standing, and stepping) were measured via activPAL3(TM) monitors worn continuously for seven days. Times spent in each activity were described and then compared across days of the week and hours of the day using linear mixed models. RESULTS: Consent rate was 48% (n = 41). Activity patterns are described for the 31 participants (mean age 84.2 years) who provided at least one day of valid monitor data. In total, 14 (45%) completed the sleep/wear diary. Participants spent a median (interquartile range) of 12.4 (1.7) h sitting/lying (with 73% of this accumulated in unbroken bouts of ≥30 min), 1.9 (1.3) h standing, and 21.4 (36.7) min stepping during their monitored waking hours per day. Activity did not vary significantly by day of the week (p ≥ 0.05); stepping showed significant hourly variation (p = 0.018). CONCLUSIONS: Older adults in residential aged care were consistently highly sedentary. Feasibility considerations for objective activity monitoring identified for this population include poor diary completion and lost monitors.

Providing general practice needs-based care for carers of people with advanced cancer: a randomised controlled trial.

BACKGROUND: Carers of patients with advanced cancer often have health and psychosocial needs, which are frequently overlooked. AIM: To meet the needs of carers through a GP consultation directed by a self-completed carer needs checklist. DESIGN AND SETTING: Randomised controlled trial in general practice with recruitment through specialist oncology clinics, in Brisbane, Australia. METHOD: Intervention was (a) carer-GP consultations directed by a self-completed checklist of needs at baseline and 3 months; and (b) a GP-Toolkit to assist GPs to address carer-identified needs. Control group received usual care. Outcome measures were intensity of needs, anxiety and depression, and quality of life. RESULTS: Total recruitment 392. Overall, no significant differences were detected in the number or intensity of need between groups. Compared to controls, intervention participants with baseline clinical anxiety showed improvements in mental wellbeing (P = 0.027), and those with baseline clinical depression had slower development of anxiety (P = 0.044) at 6 months. For those not anxious, physical wellbeing improved at 1 month (P = 0.040). Carers looking after patients with poor functional status had more physical needs (P = 0.037) at 1 month and more psychological and emotional needs at 3 months (P = 0.034). Those caring for less unwell patients showed improved mental wellbeing at 3 months (P = 0.022). CONCLUSION: The intervention did not influence the number or intensity of needs reported by carers of people with advanced cancer. There was limited impact in people with pre-existing clinical anxiety and depression. For the carer of those most severely affected by advanced cancer, it drew attention to the needs arising from the caregiving role.

Central nervous system stimulants for secondary attention deficit-hyperactivity disorder after paediatric traumatic brain injury: a rationale and protocol for single patient (n-of-1) multiple cross-over trials.

BACKGROUND: It is estimated that 22,800 children were living with an Acquired Brain Injury (ABI) (0.6% of children aged under 15 years) in Australia during 2003. Many children after a traumatic brain injury will experience difficulties with attention and concentration; a condition termed secondary Attention Deficit-Hyperactivity Disorder. There is conflicting evidence on whether treatment with stimulant therapy with medications such as methylphenidate or dexamphetamine will improve the attention and behavior of children with this condition. METHODS/DESIGN: Single patient trials (n-of-1s or SPTs) evaluate the effect of titrated doses of psychostimulants methylphenidate or dexamphetamine compared to placebo on attention and behavior, in children with TBI and secondary ADHD. The aggregation of multiple SPTs will produce a population estimate of the benefit. Forty-two children will be registered into the trial through rehabilitation services at three large children's hospitals in Australia. Patients will complete up to 3 cycles of treatment. Each cycle is 2 weeks long comprising seven days each of treatment and placebo, with the first two days of each cycle considered a washout period and the data not analysed. The order of treatment and placebo is randomly allocated for each cycle. The Conners' Parent Rating Scales long forms will be employed to measure change in attention-deficit/hyperactivity and related problems of the child, and the primary outcome measure is the Conners' Global Index Parent Version. Secondary outcomes include the teacher and child (if aged > 12 years) Conners' Rating Scales, the Behaviour Rating Inventory of Executive Function among other measures. This study will provide high-level evidence using a novel methodological approach to inform clinicians about the most appropriate treatment for individual children. Through aggregation of individual trials, a population estimate of treatment effect will be provided to guide clinical practice in the treatment of children with secondary ADHD after a traumatic brain injury. DISCUSSION: This study employs an innovative methodological approach on the effectiveness of CNS stimulants for secondary ADHD from a brain injury. The findings will both guide clinicians on treatment recommendations, and inform the concept and acceptance of SPTs in paediatric research. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry. ACTRN12609000873224.

The Assessment of Services Promoting Independence and Recovery in Elders Trial (ASPIRE): a pre-planned meta-analysis of three independent randomised controlled trial evaluations of ageing in place initiatives in New Zealand.

INTRODUCTION: intermediate care has been developed to support older people to remain living in their own homes, combining a higher level of support with a rehabilitation focus. Evidence around their effectiveness remains mixed and there is ambiguity around the components. AIMS: to establish the impact of intermediate care on institutional free survival in frail older people referred for needs assessment in New Zealand (NZ). METHODS: pre-planned meta-analysis of three randomised controlled trials with follow-up at 3, 6, 12, 18 and 24 months. A total of 567 older people at risk of permanent institutionalisation as well as their primary informal carer (n = 234) were randomised to either intermediate or usual care. Interventions had common key features of care management, though varied in the use of ongoing care provision. RESULTS: the adjusted hazard ratio for the combined primary outcome of death or residential entry was 31% lower with a 95% confidence interval of (9%, 47%) for the intermediate care initiatives compared with usual care. CONCLUSION: intermediate care utilising a care management approach reduces a frail older person's risk of mortality and permanent institutionalisation.