Background Palliative oxygen therapy is widely used for dyspnea in individuals with life-limiting illness ineligible for long-term oxygen therapy. Methods This international double-blind randomized controlled trial evaluatedeffectiveness of oxygen vs. medical (room) air for relieving breathlessness in patients with life-limiting illness, refractory dyspnea, and PaO2>55 mm Hg. Participants were recruited from outpatient clinics at 9 sites (Australia, United States, England). Participants received oxygen or medical air via concentrator through nasal cannulae at 2 liters/minute for 7 days. The primary outcome measure was breathlessness (0-10 numerical rating scale [NRS]), measured twice daily. Findings Participants (N=239) were: mean age, 73 (standard deviation [SD] 10); 62% male; mean PaO2, 77 mm Hg (SD 12); mean morning dyspnea, 4.5 on NRS (SD 2.2); chronic obstructive pulmonary disease, 64%; cancer, 16%. Oxygen was not significantly superior to medical air for relief of breathlessness. Over the 7-day period, after provision of medical gas, mean morning and evening dyspnea decreased by -0.8 (95% confidence interval [CI]: -1.1, -0.5) and -0.4 (CI: -0.7, 0.1), respectively (p<0.001), regardless of intervention. Baseline dyspnea predicted improvement with medical gas; participants with moderate (4-6 NRS) and severe (7-10 NRS) baseline dyspnea had average decreases in morning dyspnea of -0.7 (CI: -1.1, -0.4) and -2.4 (CI: -3.0, -1.8), respectively. Interpretation There is no additional symptomatic benefit of oxygen over room air delivered by nasal cannulae for relieving refractory dyspnea related to life-limiting illness in patients with PaO2>55 mm Hg. Dyspnea intensity decreased in both study arms, temporally related to provision of medical gas.

e/Tablets offer a valid, feasible, acceptable method for collecting research-quality, patient-reported outcomes data in outpatient academic oncology.

An ePRO-based rapid learning cancer clinic is feasible, providing real-time research-quality data to support comparative effectiveness research.

Goals of work The goal of this study was to evaluate, at a population level, the association between specialized palliative care services (SPCS) and short- and long-term caregiver outcomes. Patients and methods The Health Omnibus Survey, a face-to-face survey conducted annually in South Australia since 1991, collects health-related data from a rigorously derived, representative sample of 4,400 households. This study included piloted questions in the 2001, 2002, and 2003 Health Omnibus Survey on the impact of SPCS. Sample size was 9,088 individuals. “Unmet needs,” a short-term outcome relevant to the caregiving period during a life-limiting illness, were tallied. “Moving on,” a long-term caregiver-defined outcome reflecting the caregiver’s adaptation and return to a new equilibrium after the death, was assessed with and without SPCS. Results Thirty-seven percent (3,341) indicated that someone close to them had died of a terminal illness in the preceding 5 years, of whom 949 (29%) reported that they provided care. SPCS were involved in caring for 60% of deceased patients. Day-to-day caregivers indicated fewer unmet needs when SPCS were involved ( p = 0.0028). More caregivers were able to “move on” with their lives when SPCS were involved than when SPCS were not involved (86 vs 77%, p = 0.0016); this effect was greatest in the first 2 years after the loved one’s death. Conclusion At a population level, SPCS were associated with meaningful improvements in short-term (“unmet needs”) and long-term (”moving on”) caregiver-defined outcomes.

Programmed, notebook-style, personal computers ("e/Tablets") can collect symptom and quality-of-life (QOL) data at the point of care. Patients use an e/Tablet in the clinic waiting area to complete electronic surveys. Information then travels wirelessly to a server, which generates a real-time report for use during the clinical visit. The objective of this study was to determine whether academic oncology patients find e/Tablets logistically acceptable and a satisfactory means of communicating symptoms to providers during repeated clinic visits. Sixty-six metastatic breast cancer patients at Duke Breast Cancer Clinic participated. E/Tablets were customized to electronically administer a satisfaction/acceptability survey, several validated questionnaires, and the Patient Care Monitor (PCM) review of symptoms survey. At each of the four visits within six months, participants completed the patient satisfaction/acceptability survey, which furnished data for the current analysis. Participant demographics were: mean age of 54 years, 77% Caucasian, and 47% with less than a college education. Participants reported that e/Tablets were easy to read (94%), easy to navigate (99%), and had a comfortable weight (90%); they found it easy to respond to questions using the e/Tablet (98%). Seventy-five percent initially indicated satisfaction with PCM for reporting symptoms; this proportion increased over time. By the last visit, 88% of participants indicated that they would recommend the PCM to other patients; 74% felt that the e/Tablet helped them remember symptoms to report to their clinician. E/Tablets offered a feasible and acceptable method for collecting longitudinal patient-reported symptom and QOL data within an academic, tertiary care, breast cancer clinic.

Palliative medicine has only recently joined the ranks of evidence-based medical subspecialties. Palliative medicine is a rapidly evolving field, which is quickly moving to redress its historical paucity of high-quality research evidence. This burgeoning evidence base can help support the application of evidence-based principles in palliative and hospice clinical care and service delivery. New knowledge is generally taken into practice relatively slowly by established practitioners. At present, the translation of evidence into palliative and hospice care clinical practice lags behind emerging research evidence in palliative care at even greater rates for three critical reasons: 1) the application of research results to specific clinical subpopulations is complicated by the heterogeneity of palliative care study subpopulations and by the lack of a recognized schema for describing populations or services; 2) definitional issues in service provision are, at best, confusing; and 3) fundamental research concepts (e.g., external validity, effect size, generalizability, applicability) are difficult to apply meaningfully in palliative care. This article provides a suggested framework for classifying palliative care research subpopulations and the clinical subpopulations to which the research findings are being applied to improve the ability of clinicians, health planners, and funders to interpret and apply palliative care research in real-world settings. The framework has five domains: patients and caregivers; health professionals; service issues; health and social policy; and research.

Within three unique academic oncology populations, PCM 2.0 is a valid ePRO instrument for assessing symptoms with seven patient-centered subscale or index domains.

Background: Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. Methods: A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. Results: The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success.