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Palliative oxygen therapy is widely used for treatment of dyspnoea in individuals with life-limiting illness who are ineligible for long-term oxygen therapy. We assessed the effectiveness of oxygen compared with room air delivered by nasal cannula for relief of breathlessness in this population of patients. Adults from outpatient clinics at nine sites in Australia, the USA, and the UK were eligible for enrolment in this double-blind, randomised controlled trial if they had life-limiting illness, refractory dyspnoea, and partial pressure of oxygen in arterial blood (PaO 2) more than 7·3 kPa. Participants were randomly assigned in a 1:1 ratio by a central computer-generated system to receive oxygen or room air via a concentrator through a nasal cannula at 2 L per min for 7 days. Participants were instructed to use the concentrator for at least 15 h per day. The randomisation sequence was stratified by baseline PaO 2 with balanced blocks of four patients. The primary outcome measure was breathlessness (0–10 numerical rating scale [NRS]), measured twice a day (morning and evening). All randomised patients who completed an assessment were included in the primary analysis for that data point (no data were imputed). This study is registered, numbers NCT00327873 and ISRCTN67448752. 239 participants were randomly assigned to treatment (oxygen, n=120; room air, n=119). 112 (93%) patients assigned to receive oxygen and 99 (83%) assigned to receive room air completed all 7 days of assessments. From baseline to day 6, mean morning breathlessness changed by −0·9 points (95% CI −1·3 to −0·5) in patients assigned to receive oxygen and by −0·7 points (−1·2 to −0·2) in patients assigned to receive room air (p=0·504). Mean evening breathlessness changed by −0·3 points (−0·7 to 0·1) in the oxygen group and by −0·5 (−0·9 to −0·1) in the room air group (p=0·554). The frequency of side-effects did not differ between groups. Extreme drowsiness was reported by 12 (10%) of 116 patients assigned to receive oxygen compared with 14 (13%) of 108 patients assigned to receive room air. Two (2%) patients in the oxygen group reported extreme symptoms of nasal irritation compared with seven (6%) in the room air group. One patient reported an extremely troublesome nose bleed (oxygen group). Since oxygen delivered by a nasal cannula provides no additional symptomatic benefit for relief of refractory dyspnoea in patients with life-limiting illness compared with room air, less burdensome strategies should be considered after brief assessment of the effect of oxygen therapy on the individual patient. US National Institutes of Health, Australian National Health and Medical Research Council, Duke Institute for Care at the End of Life, and Doris Duke Charitable Foundation.

Background: \"Rapid learning healthcare\" presents a new infrastructure to support comparative effectiveness research. By leveraging heterogeneous datasets (eg, clinical, administrative, genomic, registry, and research), health information technology, and sophisticated iterative analyses, rapid learning healthcare provides a real-time framework in which clinical studies can evaluate the relative impact of therapeutic approaches on a diverse array of measures. Purpose: This article describes an effort, at 1 academic medical center, to demonstrate what rapid learning healthcare might look like in operation. The article describes the process of developing and testing the components of this new model of integrated clinical/research function, with the pilot site being an academic oncology clinic and with electronic patient-reported outcomes (ePROs) being the foundational dataset. Research Design: Steps included: feasibility study of the ePRO system; validation study of ePRO collection across 3 cancers; linking ePRO and other datasets; implementation; stakeholder alignment and buy in, and; demonstration through use cases. Subjects: Two use cases are presented; participants were metastatic breast cancer (n = 65) and gastrointestinal cancer (n = 113) patients at 2 academic medical centers. Results: (1) Patient-reported symptom data were collected with tablet computers; patients with breast and gastrointestinal cancer indicated high levels of sexual distress, which prompted multidisciplinary response, design of an intervention, and successful application for funding to study the intervention's impact. (2) The system evaluated the longitudinal impact of a psychosocial care program provided to patients with breast cancer. Participants used tablet computers to complete PRO surveys; data indicated significant impact on psychosocial outcomes, notably distress and despair, despite advanced disease. Results return to the clinic, allowing iterative update and evaluation. Conclusions: 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.

Translational medicine has yet to deliver on its vast potential. Obstacles, or “blocks,” to translation at three phases of research have impeded the application of research findings to clinical needs and, subsequently, the implementation of newly developed interventions in patient care. Recent federal support for comparative effectiveness research focuses attention on the clinical relevance of already-developed diagnostic and therapeutic interventions and on translating interventions found to be effective into new population-level strategies for improving health—thereby overcoming blocks at one end of the translational continuum. At the other end, while there is a preponderance of federal funding underwriting basic science research, further improvement is warranted in translating results of basic research into clinical applications and in integrating the basic sciences into the translational continuum. With its focus on the human and interactional aspects of health, medical practice, and healthcare delivery systems, behavioral medicine, itself a component of translational medicine, can inform this process.

In the context of healthcare reform, Surgery stands at a critical juncture. Attempting to rein in healthcare spending, legislators and payers can be expected to closely examine the legitimacy and necessity of a variety of medical treatments, including surgical procedures. Among these procedures, the most at risk for dismissal based on perceived ineffectiveness or lack of need may be those performed near the end of life, when the potential benefit of surgical intervention may seem negligible. While procedures may be performed for a variety of reasons toward the end of life—some indeed being inappropriate and/or unnecessary—palliative surgery plays an important role in the management of incurable disease. The purposes of this article are to: describe the place for palliative surgery in the armamentarium of palliative care; discuss potential challenges to patients’ access to palliative surgery that may arise from health policy or quality initiatives based on poor evidence; and outline a strategy for (a) systematically differentiating palliative surgeries from other, potentially expendable surgeries performed near the end of life, and (b) defining a plan for generating the evidence base to support best practice.

Collecting reliable and valid data is an increasing expectation within palliative care. Data remain the crux for demonstrating value and quality of care, which are the critical steps to program sustainability. Parallel goals of conducting research and performing quality assessment and improvement can also ensure program growth, financial health, and viability in an increasingly competitive environment. Mounting expectations by patients, hospitals, and payers and inevitable pay-for-performance paradigms have transitioned data collection procedures from novel projects to expected standard operation within usual palliative care delivery. We present types of data to collect, published guides for data collection, and how data can inform quality, value, and research within a palliative care organization. Our experiences with the Quality Data Collection Tool (QDACT) in the Carolinas Palliative Care Consortium to collect data on quality have led to valuable lessons learned in creating a data collection system. Suggested steps in forming data-sharing collaborations and building data collection procedures are shared.

Purpose Pathfinders is a multi-faceted psychosocial care program for cancer patients; it was developed in community oncology and adapted to the academic oncology setting. This prospective, single-arm, phase 2 pilot study examined the acceptability and feasibility of Pathfinders for women with metastatic breast cancer. Methods Over 3 months, participants completed patient-reported surveys including the Patient Care Monitor (PCM, review of systems), Functional Assessment of Chronic Illness Therapy—Breast Cancer (FACT-B), Self Efficacy, and a single-item survey asking patients whether the program was helpful to them. A technology-based data collection system was used to capture electronic patient-reported outcomes at point of care, report symptoms in real time to clinicians, and collect warehouse data to provide a detailed longitudinal picture of the patient experience when receiving Pathfinders. Results Participants ( n  = 50) were: mean age 51 (SD 11); 76% white, 20% black; 74% married; 50% college degree. Forty-two ( n  = 42) patients completed baseline and 3-month assessments. Statistically significant improvements (all P  < 0.05) occurred in PCM subscales for Distress (mean [SE] = −3.42 [1.21]), Despair (−4.53 [1.56]), and Quality of Life (2.88 [0.97]), and the FACT-B Emotional Wellbeing subscale (2.07 [0.46]). Of the 29 participants asked if Pathfinders was helpful, 27 (93%) responded positively and two did not respond. Other instruments measuring symptoms, quality of life, and self-efficacy showed improvement. Conclusions In a phase 2 pilot study, Pathfinders was helpful to patients and is feasible in an academic medical center. Follow-up data collected at the 3-month assessment suggest that the program impacts various psychological outcomes, notably distress and despair.

The advancement of translational behavioral medicine will require that we discover new methods of managing large volumes of data from disparate sources such as disease surveillance systems, public health systems, and health information systems containing patient-centered data informed by behavioral and social sciences. The term “liquidity,” when applied to data, refers to its availability and free flow throughout human/computer interactions. In seeking to achieve liquidity, the focus is not on creating a single, comprehensive database or set of coordinated datasets, nor is it solely on developing the electronic health record as the “one-stop shopping” source of health-related data. Rather, attention is on ensuring the availability of secure data through the various methods of collecting and storing data currently existent or under development—so that these components of the health information infrastructure together support a liquid data system. The value of accessible, interoperable, high-volume, reliable, secure, and contextually appropriate data is becoming apparent in many areas of the healthcare system, and health information liquidity is currently viewed as an important component of a patient-centered healthcare system. The translation from research interventions to behavioral and psychosocial indicators challenges the designers of healthcare systems to include this new set of data in the correct context. With the intention of advancing translational behavioral medicine at the local level, “on the ground” in the clinical office and research institution, this commentary discusses data liquidity from the patient's and clinician's perspective, requirements for a liquid healthcare data system, and the ways in which data liquidity can support translational behavioral medicine.

Goals Management of the risk of potential chemotherapy-induced neutropenic complications such as febrile neutropenia (FN) and severe neutropenia (SN) is a quality of care priority. How frequently does care at our institution conform to established guidelines? Materials and methods This retrospective chart review study included a random sample of 305 cancer patients receiving care at a single US academic medical center. Abstracted data included demographics, risk factors, and outcome variables (e.g., development of FN/SN, administration of myeloid growth factors). To evaluate quality of care, we assessed conformance between actual practice and established clinical practice guidelines for the use of myeloid growth factors from the National Comprehensive Cancer Network (NCCN). Main results Of the 305 cases reviewed, 8% were classified as low risk (<10%), 48% as intermediate risk (10–20%), and 44% as high risk (>20%), using the risk classifications in the NCCN guidelines modified to accommodate illness and other risk factors. Thirty-four percent received prophylactic administration of myeloid growth factors. Half of the cases had adequate documentation of mid-cycle absolute neutrophil count to determine whether FN/SN developed. Among these cases with adequate documentation, 21% developed FN/SN. Use of growth factors did not conform to established quality guidelines. Overall, 77 of 133 (58%) high-risk cases received myeloid growth factors, whereas six of 25 (24%) low-risk cases received myeloid growth factors. Conclusions Routine clinical practice in this academic oncology setting was poorly aligned with established guidelines; there is substantial opportunity to standardize clinical strategies and increase conformance with evidence-based guidelines.