Quality of life is significantly associated with survival in women with advanced epithelial ovarian cancer: An ancillary data analysis of the NRG Oncology/Gynecologic Oncology Group (GOG-0218) study.

OBJECTIVE: Evaluate association between baseline quality of life (QOL) and changes in QOL measured by FACT-O TOI with progression-free disease (PFS) and overall survival (OS) in advanced epithelial ovarian cancer (EOC). METHODS: Patients enrolled in GOG-0218 with completed FACT-O TOI assessments at baseline and at least one follow-up assessment were eligible. Baseline FACT-O TOI scores were sorted by quartiles (Q1-4) and outcomes compared between Q1 and Q2-4 with log-rank statistic and multivariate Cox regression adjusting for age, stage, post-surgical residual disease size, and performance status (PS). Trends in FACT-O TOI scores from baseline to the latest follow-up assessment were evaluated for impact on intragroup (Q1 or Q2-4) outcome by log-rank analysis. RESULTS: Of 1152 eligible patients, 283 formed Q1 and 869 formed Q2-4. Mean baseline FACT-O TOI scores were 47.5 for Q1 vs. 74.7 for Q2-4 (P<0.001). Q1 compared to Q2-4 had worse median OS (37.5 vs. 45.6months, P=0.001) and worse median PFS (12.5 vs. 13.1months, P=0.096). Q2-4 patients had decreased risks of disease progression (HR 0.974, 95% CI 0.953-0.995, P=0.018), and death (HR 0.963, 95% CI 0.939-0.987, P=0.003) for each five-point increase in baseline FACT-O TOI. Improving versus worsening trends in FACT-O TOI scores were associated with longer median PFS (Q1: 12.7 vs. 8.6months, P=0.001; Q2-4: 16.7 vs. 11.1months, P<0.001) and median OS (Q1: 40.8 vs. 16months, P<0.001; Q2-4: 54.4 vs. 33.6months, P<0.001). CONCLUSIONS: Baseline FACT-O TOI scores were independently prognostic of PFS and OS while improving compared to worsening QOL was associated with significantly better PFS and OS in women with EOC.

Routine CT angiography to detect severe coronary artery disease prior to transcatheter aortic valve replacement.

Patients undergoing TAVR undergo routine CT angiography (CTA) to assess aorto-iliac pathology and annular dimensions. While coronary CTA may exclude severe CAD in younger patients, its efficacy in defining CAD severity prior to TAVR may be limited. We retrospectively studied 50 consecutive patients undergoing both invasive coronary angiography (ICA) and routine pre-TAVR CTA. Severe CAD was defined as ≥50% stenosis by quantitative coronary angiography and compared to a blinded CTA visual estimation of ≥50% stenosis. The analysis was confined to four segments: left main and three proximal to mid major coronaries to maximize myocardial territory at risk. Coronary assessment was performed using standard reconstructed ECG phases from pre-TAVR chest CTA on a Philips 256 iCT scanner. Nearly ¾ of patients were ≥75 years old, 57% were female, half were diabetic and 45% had prior PCI. By ICA, 49% had significant coronary calcification. The incidence of severe proximal to mid vessel CAD by ICA was 39%. Similarly, a third of patients required PCI prior to TAVR. CTA was unable to exclude severe proximal to mid vessel CAD in 88% of patients in all four segments: non-diagnostic CTA readings were mainly due to calcification (60%) or motion artifact (28%). Non-diagnostic coronary CTA readings ranged from 25 to 72% according to segment analyzed: only the left main segment had diagnostic quality CTA in the majority of patients (p < 0.01). PCI is performed frequently prior to TAVR based upon invasive coronary angiographic assessment. Routine chest CTA algorithms do not provide adequate diagnostic information to exclude severe CAD, primarily due to severe coronary calcification in the TAVR population.

ROMANA 3: a phase 3 safety extension study of anamorelin in advanced non-small-cell lung cancer (NSCLC) patients with cachexia.

BACKGROUND: Cancer anorexia-cachexia is a debilitating condition frequently observed in NSCLC patients, characterized by decreased body weight, reduced food intake, and impaired quality of life. Anamorelin, a novel selective ghrelin receptor agonist, has anabolic and appetite-enhancing activities. PATIENTS AND METHODS: ROMANA 3 was a safety extension study of two phase 3, double-blind studies that assessed safety and efficacy of anamorelin in advanced NSCLC patients with cachexia. Patients with preserved Eastern Cooperative Oncology Group ≤2 after completing 12 weeks (w) on the ROMANA 1 or ROMANA 2 trials (0-12 weeks) could enroll in ROMANA 3 and continue to receive anamorelin 100 mg or placebo once daily for an additional 12w (12-24 weeks). The primary endpoint of ROMANA 3 was anamorelin safety/tolerability (12-24 weeks). Secondary endpoints included changes in body weight, handgrip strength (HGS), and symptom burden (0-24 weeks). RESULTS: Of the 703 patients who completed ROMANA 1 and ROMANA 2, 513 patients entered ROMANA 3 (anamorelin, N = 345, mean age 62.0 years; placebo, N = 168; mean age 62.2 years). During ROMANA 3, anamorelin and placebo groups had similar incidences of treatment-emergent adverse events (TEAEs; 52.2% versus 55.7%), grade ≥3 TEAEs (22.4% versus 21.6%), and serious TEAEs (12.8% versus 12.6%). There were 36 (10.5%) and 23 (13.8%) deaths in the anamorelin and placebo groups, respectively; none were drug-related. Improvements in body weight and anorexia-cachexia symptoms observed in the original trials were consistently maintained over 12-24 weeks. Anamorelin, versus placebo, significantly increased body weight from baseline of original trials at all time points (P < 0.0001) and improved anorexia-cachexia symptoms at weeks 3, 6, 9, 12, and 16 (P < 0.05). No significant improvement in HGS was seen in either group. CONCLUSION: During the 12-24 weeks ROMANA 3 trial, anamorelin continued to be well tolerated. Over the entire 0-24w treatment period, body weight and symptom burden were improved with anamorelin. CLINICAL TRIAL REGISTRATION NUMBERS: ROMANA 1 (NCT01387269), ROMANA 2 (NCT01387282), and ROMANA 3 (NCT01395914).

Effect of nivolumab on health-related quality of life in patients with treatment-naïve advanced melanoma: results from the phase III CheckMate 066 study.

BACKGROUND: Nivolumab has shown significant survival benefit and a favorable safety profile compared with dacarbazine chemotherapy among treatment-naïve patients with metastatic melanoma in the CheckMate 066 phase III study. Results from the health-related quality of life (HRQoL) analyses from CheckMate 066 are presented. PATIENTS AND METHODS: HRQoL was evaluated at baseline and every 6 weeks while on treatment using the European Organisation for Research and Treatment of Care (EORTC) Core Quality of Life Questionnaire (QLQ-C30) and the EuroQoL Five Dimensions Questionnaire (EQ-5D). Via a multi-step statistical plan, data were analyzed descriptively, cross-sectionally, and longitudinally, adjusting for baseline covariates, in patients having baseline plus ≥1 post-baseline assessment. RESULTS: Baseline-adjusted completion rates for all HRQoL questionnaires across treatment arms were 65% and 70% for dacarbazine and nivolumab, respectively, and remained similar throughout treatment. The mean baseline HRQoL scores were similar for patients treated with nivolumab and dacarbazine. Baseline HRQoL levels with nivolumab were maintained over time. This exploratory analysis showed a between-arm difference in favor of nivolumab on the EQ-5D utility index and clinically meaningful EQ-5D improvements from baseline at several time points for patients receiving nivolumab. Patients treated with nivolumab did not show increased symptom burden as assessed by the EORTC QLQ-C30. No HRQoL change was noted with dacarbazine patients up to week 43, although the high attrition rate after week 13 did not allow any meaningful analyses. Patients receiving nivolumab deteriorated significantly later than those receiving dacarbazine on several EORTC QLQ-C30 scales and the EQ-5D utility index. CONCLUSIONS: In addition to prolonged survival, these exploratory HRQoL results show that nivolumab maintains baseline HRQoL levels to provide long-term quality of survival benefit, compared with dacarbazine in patients with advanced melanoma.

Patient experience in the treatment of metastatic castration-resistant prostate cancer: state of the science.

BACKGROUND: Contemporary therapies for metastatic castration-resistant prostate cancer (mCRPC) have shown survival improvements, which do not account for patient experience and health-related quality of life (HRQoL). METHODS: This literature review included a search of MEDLINE for randomized clinical trials enrolling ⩾50 patients with mCRPC and reporting on patient-reported outcomes (PROs) since 2010. RESULTS: Nineteen of 25 publications describing seven treatment regimens (10 clinical trials and nine associated secondary analyses) met the inclusion criteria and were critically appraised. The most commonly used measures were the Functional Assessment of Cancer Therapy-Prostate (n=5 trials) and Brief Pain Inventory Short Form (n=4 trials) questionnaires. The published data indicated that HRQoL and pain status augmented the clinical efficacy data by providing a better understanding of treatment impact in mCRPC. Abiraterone acetate and prednisone, enzalutamide, radium-223 dichloride and sipuleucel-T offered varying levels of HRQoL benefit and/or pain mitigation versus their respective comparators, whereas three treatments (mitoxantrone, estramustine phosphate and docetaxel, and cabazitaxel) had no meaningful impact on HRQoL or pain. The main limitation of the data were that the PROs utilized were not developed for use in mCRPC patients and hence may not have comprehensively captured symptoms important to this population. CONCLUSIONS: Recently published randomized clinical trials of new agents for mCRPC have captured elements of the patient experience while on treatment. Further research is required to standardize methods for measuring, quantifying and reporting on HRQoL and pain in patients with mCRPC in the clinical practice setting.

Risk stratification, treatment selection, and transplant eligibility in multiple myeloma: a qualitative study of the perspectives and self-reported practices of oncologists.

BACKGROUND: Since the early 2000s, treatment options for multiple myeloma have rapidly expanded, adding significant complexity to the management of this disease. To our knowledge, no systematic qualitative research on clinical decision-making in multiple myeloma has been published. We sought to characterize how physicians view and implement guidelines and incorporate novel approaches into patient care. METHODS: We designed a semi-structured qualitative interview guide informed by literature review and an expert advisory panel. We conducted 60-minute interviews with a diverse sample of oncology physicians in the southeast United States. We used a constant comparative method to code and analyze interview transcripts. The research team and advisory panel discussed and validated emergent themes. RESULTS: Participants were 13 oncologists representing 5 academic and 4 community practices. Academic physicians reported using formal risk-stratification schemas; community physicians typically did not. Physicians also described differences in eligibility criteria for transplantation; community physicians emphasized distance, social support, and psychosocial capacity in making decisions about transplantation referral; the academic physicians reported using more specific clinical criteria. All physicians reported using a maintenance strategy both for post-transplant and for transplant-ineligible patients; however, determining the timing of maintenance therapy initiation and the response were reported as challenging, as was recognition or definition of relapse, especially in terms of when treatment re-initiation is indicated. CONCLUSIONS: Practices reported by both academic and community physicians suggest opportunities for interventions to improve patient care and outcomes through optimal multiple myeloma management and therapy selection. Community physicians in particular might benefit from targeted education interventions about risk stratification, transplant eligibility, and novel therapies.

Radiographic, computed tomographic and surgical anatomy of the equine sphenopalatine sinus in normal and diseased horses.

REASONS FOR PERFORMING STUDY: Knowledge of imaging anatomy, surgical anatomy and disorders affecting the sphenopalatine sinus are currently lacking. OBJECTIVES: To describe the computed tomographic (CT) and surgical anatomy of the sphenopalatine sinus and diagnosis, treatment and outcome in clinical cases with sphenopalatine sinus disease. STUDY DESIGN: Cadaver observational study and retrospective case series. METHODS: The sphenopalatine sinuses of 10 normal cadaver heads were examined with digital radiography, CT and sinoscopic examination prior to anatomical sectioning. Sphenopalatine sinus anatomy was described and compared between cadaver specimens across the imaging modalities. Medical records (January 2004-2014) of cases diagnosed with sphenopalatine sinus disease were reviewed. RESULTS: The anatomy of the sphenopalatine sinus was variable. The borders of the sphenopalatine sinus were not identifiable on plain radiographs, whereas CT provided useful anatomical information. The palatine portion of the sphenopalatine sinus was consistently accessible sinoscopically and the sphenoidal portion was accessible in 6/10 cadaver heads. Fourteen cases of sphenopalatine sinus disease were identified, presenting with one or more clinical signs of exophthalmos, blindness, unilateral epistaxis or unilateral nasal discharge. Diagnoses included neoplasia (7), progressive ethmoidal haematoma (4), sinus cyst (2) and empyema (1). Computed tomography provided diagnostic information but could not differentiate the nature of soft tissue masses. Standing sinoscopic access to the palatine portion of the sphenopalatine sinus was possible for evaluation, biopsy and resection of abnormal soft tissues. Surgical access to the sphenoidal portion was limited. Eight horses were alive at 1 year after diagnosis, with a worse outcome associated with CT evidence of bone loss and a diagnosis of neoplasia. CONCLUSIONS: Sphenopalatine sinus disease should be considered a rare cause of the clinical signs described. Knowledge of the anatomical variation of the sphenopalatine sinus is vital for interpreting CT images. A combination of CT and sinoscopy provides the most comprehensive approach for diagnosis and treatment of sphenopalatine sinus disease.

Best supportive care in clinical trials: review of the inconsistency in control arm design.

BACKGROUND: Best supportive care (BSC) as a control arm in clinical trials is poorly defined. We conducted a review to evaluate clinical trials' concordance with published, consensus-based framework for BSC delivery in trials. METHODS: A consensus-based Delphi panel previously identified four key domains of BSC delivery in trials: multidisciplinary care; supportive care documentation; symptom assessment; and symptom management. We reviewed trials including BSC control arms from 2002 to 2014 to assess concordance to BSC standards and to selected items from the CONSORT 2010 guidelines. RESULTS: Of 408 articles retrieved, we retained 18 after applying exclusion criteria. Overall, trials conformed to the CONSORT guidelines better than the BSC standards (28% vs 16%). One-third of articles offered a detailed description of BSC, 61% reported regular symptom assessment, and 44% reported using validated symptom assessment measures. One-third reported symptom assessment at identical intervals in both arms. None documented evidence-based symptom management. No studies reported educating patients about symptom management or goals of therapy. No studies reported offering access to palliative care specialists. CONCLUSIONS: Reporting of BSC in trials is incomplete, resulting in uncertain internal and external validity. Such studies risk systematically over-estimating the net clinical effect of the comparator arms.

Indicators of integration of oncology and palliative care programs: an international consensus.

BACKGROUND: Recently, the concept of integrating oncology and palliative care has gained wide professional and scientific support; however, a global consensus on what constitutes integration is unavailable. We conducted a Delphi Survey to develop a consensus list of indicators on integration of specialty palliative care and oncology programs for advanced cancer patients in hospitals with ≥100 beds. METHODS: International experts on integration rated a list of indicators on integration over three iterative rounds under five categories: clinical structure, processes, outcomes, education, and research. Consensus was defined a priori by an agreement of ≥70%. Major criteria (i.e. most relevant and important indicators) were subsequently identified. RESULTS: Among 47 experts surveyed, 46 (98%), 45 (96%), and 45 (96%) responded over the three rounds. Nineteen (40%) were female, 24 (51%) were from North America, and 14 (30%) were from Europe. Sixteen (34%), 7 (15%), and 25 (53%) practiced palliative care, oncology, and both specialties, respectively. After three rounds of deliberation, the panelists reached consensus on 13 major and 30 minor indicators. Major indicators included two related to structure (consensus 95%-98%), four on processes (88%-98%), three on outcomes (88%-91%), and four on education (93%-100%). The major indicators were considered to be clearly stated (9.8/10), objective (9.4/10), amenable to accurate coding (9.5/10), and applicable to their own countries (9.4/10). CONCLUSIONS: Our international experts reached broad consensus on a list of indicators of integration, which may be used to identify centers with a high level of integration, and facilitate benchmarking, quality improvement, and research.

Prescribing for comorbid disease in a palliative population: focus on the use of lipid-lowering medications.

BACKGROUND: The balance of benefit versus burden of ongoing treatments for comorbid disease in palliative populations as death approaches needs careful consideration given their particular susceptibility to adverse drug effects. AIM: To provide descriptive data regarding the medications being prescribed to patients who have a life-limiting illness at the time of referral to a palliative care service in regional Australia, with particular focus on lipid-lowering medications. METHODS: A prospective case note review of 203 patients reporting the number of medications prescribed and, for lipid-lowering medications, the indication and level of prevention sought (primary, secondary, tertiary). Rates were compared by performance status, disease phase and comorbidity burden. RESULTS: Mean number of regular medications prescribed was 7.2, with higher rates observed in those patients with a non-malignant primary diagnosis (rate ratio 1.28, confidence interval (CI) 1.11-1.50) or poorer performance status (rate ratio 1.37, CI 1.11-1.69) and lower rates for those in the terminal phase of disease (rate ratio 0.48, CI 0.30-0.76). Over one fifth of patients were prescribed a lipid-lowering medication, and two fifths of these prescriptions were for primary prevention of cardiovascular disease. Patients in the highest quartile of Charlson Comorbidity Index score were 4.6 (CI 2.06-10.09) times more likely to be prescribed a lipid-lowering medication than those in the lowest quartile. CONCLUSIONS: Polypharmacy is prevalent for this group of patients, placing them at high risk of drug-drug and drug-host interactions. Prescribing may be driven by risk factors and disease guidelines rather than a rational, patient-centred approach.

Cardiopulmonary fitness in patients undergoing hematopoietic SCT: a pilot study.

Hematopoietic cell transplantation (HCT) is a life-saving treatment for patients with high-risk hematological malignancies. Prognostic measures to determine fitness for HCT are needed to inform decision-making and interventions. VO(2peak) is obtained by measuring gas exchange during cycle ergometry and has not been studied as a prognostic factor in HCT. Thirty-two autologous and allogeneic HCT patients underwent VO(2peak) and 6 Minute Walk (6MW) testing before HCT, and provided weekly symptom and health-related quality of life (HRQOL) assessments before HCT and concluding at Day 100. Twenty-nine patients completed pre-HCT testing. Pre-HCT VO(2peak) was positively correlated with pre-HCT 6MW (r=0.65, P<0.001) and negatively correlated with number of chemotherapy regimens and months of chemotherapy. Patients with lower VO(2peak) reported higher symptom burden and inferior HRQOL at baseline and during early post-HCT period. Patients with pre-HCT VO(2peak) <16 mL/kg/min had higher risk of mortality post HCT (entire cohort: hazard ratio (HR) 9.1 (1.75-47.0), P=0.01; allogeneic HCT patients only: HR 6.70 (1.29-34.75), P=0.02) and more hospitalized days before Day 100 (entire cohort: median 33 vs 19, P=0.003; allogeneic HCT patients only: median 33 vs 21, P=0.004). VO(2peak) pre-HCT is feasible and might predict symptom severity, HRQOL and mortality. Additional studies are warranted.

Investment of palliative medicine in bridging the gap with academia: a call to action.

Palliative care and palliative medicine define a relatively new medical discipline that has arisen in response to the need for better approaches to caring for people with advanced life-limiting illnesses. For professional, managerial and cultural reasons, it has evolved largely outside of academic structures. As the discipline has matured, its needs for education, training, intellectual discourse, evidence development and new science have become more apparent. Traditional academia remains sceptical about the role of palliative medicine, and bastions of palliative medicine expertise in universities have been slow to develop. Yet the engagement of the academic sector in palliative medicine has distinct benefits: (1) promoting the exploration of the culture, humanities and science of the discipline; (2) generating evidence to support practice; (3) creating a legion of educators to train a palliative medicine workforce and to inform clinical colleagues of the role of palliative medicine; and (4) providing order and direction to the discipline's development. A roadmap leading to better engagement between palliative medicine and academia is needed. Examples of developments that could help bridge the two domains include: standardisation of terminology and clarification of boundaries of influence; focus on high-quality research that will generate robust evidence to support clinical decision-making; and clear definition of outcomes, with measures that are understandable across medical disciplines.

The antibacterial effect of photodynamic therapy in dental plaque-derived biofilms.

BACKGROUND AND OBJECTIVE: Photodynamic therapy has been advocated as an alternative to antimicrobial agents to suppress subgingival species and to treat periodontitis. Bacteria located within dense biofilms, such as those encountered in dental plaque, have been found to be relatively resistant to antimicrobial therapy. In the present study, we investigated the ability of photodynamic therapy to reduce the number of bacteria in biofilms by comparing the photodynamic effects of methylene blue on human dental plaque microorganisms in the planktonic phase and in biofilms. MATERIAL AND METHODS: Dental plaque samples were obtained from 10 subjects with chronic periodontitis. Suspensions of plaque microorganisms from five subjects were sensitized with methylene blue (25 microg/mL) for 5 min then exposed to red light. Multispecies microbial biofilms developed from the same plaque samples were also exposed to methylene blue (25 microg/mL) and the same light conditions as their planktonic counterparts. In a second set of experiments, biofilms were developed with plaque bacteria from five subjects, sensitized with 25 or 50 microg/mL of methylene blue and then exposed to red light. After photodynamic therapy, survival fractions were calculated by counting the number of colony-forming units. RESULTS: Photodynamic therapy killed approximately 63% of bacteria present in suspension. By contrast, in biofilms, photodynamic therapy had much less of an effect on the viability of bacteria (32% maximal killing). CONCLUSION: Oral bacteria in biofilms are affected less by photodynamic therapy than bacteria in the planktonic phase. The antibacterial effect of photodynamic therapy is reduced in biofilm bacteria but not to the same degree as has been reported for treatment with antibiotics under similar conditions.

Does palliative home oxygen improve dyspnoea? A consecutive cohort study.

Palliative oxygen for refractory dyspnoea is frequently prescribed, even when the criteria for long-term home oxygen (based on survival, rather than the symptomatic relief of breathlessness) are not met. Little is known about how palliative home oxygen affects symptomatic breathlessness. A 4-year consecutive cohort from a regional community palliative care service in Western Australia was used to compare baseline breathlessness before oxygen therapy with dyspnoea sub-scales on the symptom assessment scores (SAS; 0-10) 1 and 2 weeks after the introduction of oxygen. Demographic and clinical characteristics of people who responded were included in a multi-variable logistic regression model. Of the study population (n = 5862), 21.1% (n = 1239) were prescribed oxygen of whom 413 had before and after data that could be included in this analysis. The mean breathlessness before home oxygen was 5.3 (SD 2.5; median 5; range 0-10). There were no significant differences overall at 1 or 2 weeks (P = 0.28) nor for any diagnostic sub-groups. One hundred and fifty people (of 413) had more than a 20% improvement in mean dyspnoea scores. In multi-factor analysis, neither the underlying diagnosis causing breathlessness nor the demographic factors predicted responders at 1 week. Oxygen prescribed on the basis of breathlessness alone across a large population predominantly with cancer does not improve breathlessness for the majority of people. Prospective randomised trials in people with cancer and non-cancer are needed to determine whether oxygen can reduce the progression of breathlessness compared to a control arm.

Changes in anticholinergic load from regular prescribed medications in palliative care as death approaches.

Although there is an understandable emphasis on the side effects of individual medications, the cumulative effects of medications have received little attention in palliative care prescribing. Anticholinergic load reflects a cumulative effect of medications that may account for several symptoms and adverse health outcomes frequently encountered in palliative care. A secondary analysis of 304 participants in a randomised controlled trial had their cholinergic load calculated using the Clinician-Rated Anticholinergic Scale (modified version) longitudinally as death approached from medication data collected prospectively by study nurses on each visit. Mean time from referral to death was 107 days, and mean 4.8 visits were conducted in which data were collected. Relationships to key factors were explored. Data showed that anticholinergic load rose as death approached because of increasing use of medications for symptom control. Symptoms significantly associated with increasing anticholinergic load included dry mouth and difficulty concentrating (P < 0.05). There were also significant associations with increasing anticholinergic load and decreasing functional status (Australia-modified Karnofsky Performance Scale; and quality of life (P < 0.05). This study has documented in detail the longitudinal anticholinergic load associated with medications used in a palliative care population between referral and death, demonstrating the biggest contributor to anticholinergic load in a palliative care population is from symptom-specific medications, which increased as death approached.

Researching breathlessness in palliative care: consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup.

Breathlessness is common in advanced disease and can have a devastating impact on patients and carers. Research on the management of breathlessness is challenging. There are relatively few studies, and many studies are limited by inadequate power or design. This paper represents a consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup. The aims of this paper are to facilitate the design of adequately powered multi-centre interventional studies in breathlessness, to suggest a standardised, rational approach to breathlessness research and to aid future 'between study' comparisons. Discussion of the physiology of breathlessness is included.

Defining distinct caregiver subpopulations by intensity of end-of-life care provided.

Interventions designed to assist informal caregivers who serve individuals at or near the end of life have predominantly focused on caregiving spouses. Can we define other caregiver subpopulations--by intensity of care provided--so as to enable better a) identification of caregiver needs and b) targeting of support to caregivers? The Health Omnibus Survey, an annual face-to-face survey in South Australia, collects health-related data from a representative sample of 4400 households. Piloted questions included in the 2001-2005 Health Omnibus surveys addressed death of a loved one, caregiving provided, impact of caregiving and caregiver characteristics. Of 18,224 respondents, 5302 reported a loved one's death due to terminal illness in the previous 5 years. In all, 502 (10%) provided daily care [5-7 days/week], 619 (12%) provided intermittent care [2-4 days/week] and 425 (8%) provided rare care. Active (daily plus intermittent) caregivers, compared with non-active (rare) caregivers, were more often women (63% vs 50%; P < 0.0001). Daily caregivers were distinguishable from intermittent; daily caregivers were more often widowed (95% vs 7%; P < 0.0001) and >or=60 years (80% vs 64%; P < 0.0001); intermittent caregivers were more commonly children/parents (35%), other relatives (33%), or friends (26%; P < 0.0001) and were better educated, more active in paid work and wealthier. Financial burden, experience at time of death, ability to move on after the death and need for grief support also differed by intensity of caregiving. Caregiver subpopulations can be defined according to intensity of caregiving with distinct demographic features helping to distinguish them.

Preference for place of care and place of death in palliative care: are these different questions?

Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (kappa 0.33) and 36% (kappa 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.