Health-related quality of life among survivors of aggressive non-Hodgkin lymphoma.

BACKGROUND: Non-Hodgkin lymphoma (NHL) is the fifth most common cancer among men and women. Patients with aggressive NHL receive intense medical treatments that can significantly compromise health-related quality of life (HRQOL). However, knowledge of HRQOL and its correlates among survivors of aggressive NHL is limited. METHODS: Self-reported data on HRQOL (physical and mental function, anxiety, depression, and fatigue) were analyzed for 319 survivors of aggressive NHL. Survivors 2 to 5 years postdiagnosis were selected from the Los Angeles County Cancer Registry. Bivariate and multivariable methods were used to assess the influence of sociodemographic, clinical, and cognitive health-appraisal factors on survivors' HRQOL. RESULTS: After accounting for other covariates, marital status was associated with all HRQOL outcomes (P < .05). Younger survivors reported worse mental function and higher levels of depression, anxiety, and fatigue (P < .01). Survivors who had more comorbid conditions or lacked private health insurance reported worse physical and mental function and higher levels of depression and fatigue (P < .05). Survivors who experienced a recurrence reported worse physical function and higher levels of depression and fatigue (P < .05). With the exception of a nonsignificant association between perceived control and physical function, greater perceptions of personal control and health competence were associated significantly with more positive HRQOL outcomes (P < .01). CONCLUSIONS: The current results indicated that survivors of aggressive NHL who are younger, are unmarried, lack private insurance, or experience greater illness burden may be at risk for poorer HRQOL. Cognitive health-appraisal factors were strongly related to HRQOL, suggesting potential benefits of interventions focused on these mutable factors for this population.

Palliative and end-of-life care research: embracing new opportunities.

The past two decades have witnessed dramatic advances in palliative and end-of-life care research with increased understanding of the burden of life-limiting diseases on patients, families, clinicians, and our healthcare system; and researchers have documented palliative care interventions that improve patient and family outcomes and reduce the costs of care (Detering, Hancock, Reade, & Silvester, 2010). These advances have led to a new era of palliative and end-of-life care research and practice with widespread recognition of its accomplishments and successes. Consequently, we now have an important opportunity to reassess our recent successes and challenges and to identify the goals and benchmarks that will ensure ongoing robust advances in this now-recognized and critical scientific area. High-quality palliative and end-of-life care will be best informed by methodologically strong research efforts that generate a body of evidence with the capacity to support and direct care and effect changes in practice. It is in this context that the National Institute of Nursing Research conceptualized and led a Summit titled The Science of Compassion: Future Directions in End-of-Life and Palliative Care Research in August, 2011. In this summary article, we present brief overviews of the six articles chosen for this Special Issue of Nursing Outlook, examine their key conclusions, articulate gaps and needs, and discuss next steps in palliative and end-of-life care research through the lens of these six topics.

Prospective integration of cultural consideration in biomedical research for patients with advanced cancer: recommendations from an international conference on malignant bowel obstruction in palliative care.

In the setting of an international conference on malignant bowel obstruction as a model for randomized controlled trials (RCTs) in palliative care, we discuss the importance of incorporating prospective cultural considerations into research design. The approach commonly used in biomedical research has traditionally valued the RCT as the ultimate "way of knowing" about how to best treat a medical condition. The foremost limitation of this approach is the lack of recognition of the impact of cultural viewpoints on research outcomes. We propose that interest relevant to cultural viewpoints should be emphasized in conceptualizing and interpreting research questions, designs, and results. In addition to recognizing our cultural biases as individuals and researchers, we recommend two major shifts in designing and implementing RCTs: 1) inclusion of a multidisciplinary team of researchers to inform the diversity of perspectives and expertise brought to the research, and 2) use of mixed methods of inquiry, reflecting both deductive and inductive modes of inference.

Riding the crest of the teachable moment: promoting long-term health after the diagnosis of cancer.

PURPOSE: Cancer survivors are at increased risk for several comorbid conditions, and many seek lifestyle change to reduce dysfunction and improve long-term health. To better understand the impact of cancer on adult survivors' health and health behaviors, a review was conducted to determine (1) prevalent physical health conditions, (2) persistent lifestyle changes, and (3) outcomes of previous lifestyle interventions aimed at improving health within this population. METHODS: Relevant studies from 1966 and beyond were identified through MEDLINE and PubMed searches. RESULTS: Cancer survivors are at increased risk for progressive disease but also for second primaries, osteoporosis, obesity, cardiovascular disease, diabetes, and functional decline. To improve overall health, survivors frequently initiate diet, exercise, and other lifestyle changes after diagnosis. However, those who are male, older, and less educated are less likely to adopt these changes. There also is selective uptake of messages, as evidenced by findings that only 25% to 42% of survivors consume adequate amounts of fruits and vegetables, and approximately 70% of breast and prostate cancer survivors are overweight or obese. Several behavioral interventions show promise for improving survivors' health-related outcomes. Oncologists can play a pivotal role in health promotion, yet only 20% provide such guidance. CONCLUSION: With 64% of cancer patients surviving > 5 years beyond diagnosis, oncologists are challenged to expand their focus from acute care to managing the long-term health consequences of cancer. Although more research is needed, opportunities exist for oncologists to promote lifestyle changes that may improve the length and quality of life of their patients.

The complex health profile of long-term cancer survivors: prevalence and predictors of comorbid conditions.

PURPOSE: Adult cancer survivors have complex medical profiles that may include chronic conditions beyond cancer. Few studies have examined the prevalence of comorbidities before and after a cancer diagnosis. METHODS: Cancer cases were sampled from two California cancer registries to examine medical conditions (ever experienced and developed after cancer) among 1,527 long-term breast, prostate, colorectal, and gynecological cancer survivors by socio-demographic, cancer-related, and health behavior variables. RESULTS: On average, survivors reported five medical conditions ever diagnosed (95 % CI, 4.8, 5.1) and 1.9 conditions (95 % CI, 1.8, 2.0) diagnosed after cancer. Breast cancer survivors reported the highest (5.8 ever, 2.9 post-cancer) and prostate survivors the lowest (4.0 ever, 1.0 post-cancer) comorbidity burden. Higher comorbidity burden was associated with older age, being a breast cancer survivor, divorced, widowed or separated, non-Hispanic White, overweight or obese, and not receiving chemotherapy. Breast and endometrial cancer survivors, as well as those more than 10 years post-diagnosis, obese, or physically inactive were more likely to report that these comorbidities occurred after cancer. Cancer treatment type, smoking, age, race/ethnicity, marital status, and education were not significant predictors of comorbidities acquired post-cancer. CONCLUSIONS: Cancer survivors report a large number of medical conditions, many identified after a cancer diagnosis. Findings suggest that time since cancer diagnosis, body mass index, and activity level are important contextual variables when managing survivor's post-treatment follow-up care. IMPLICATIONS FOR CANCER SURVIVORS: Survivors may benefit when health professionals recommend specific strategies to achieve a healthy weight and regular physical activity for better long-term health outcomes after cancer.

Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness: a randomized clinical trial.

IMPORTANCE: For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE: To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS: Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES: Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS: A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were $3.37 per day and $716 per patient. CONCLUSIONS AND RELEVANCE: This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01415934.

Trends and advances in cancer survivorship research: challenge and opportunity.

With continued advances in strategies to detect cancer early and treat it effectively along with the aging of the population, the number of individuals living years beyond a cancer diagnosis can be expected to continue to increase. Although beneficial and often lifesaving against the diagnosed malignancy, most therapeutic modalities for cancer are associated with a spectrum of late complications ranging from minor and treatable to serious or, occasionally, potentially lethal. Taken as a whole, investigators conducting research among long-term cancer survivors (those 5 years or more beyond cancer diagnosis) are reporting that long-term adverse outcomes are more prevalent, serious, and persistent than expected in survivors of both pediatric and adult cancer. However, the long-term and late effects of cancer and its treatment remain poorly documented and understood among those diagnosed as adults. These data underscore the need for continued research in this ever-growing portion of the cancer survivorship spectrum. This article examines (1) definitional issues relevant to cancer survivorship, (2) the evolving paradigm of cancer survivorship research, (3) prevalence data for cancer survivors, (4) research needs and issues of particular relevance to long-term cancer survivors, and (5) cancer survivorship as a scientific research area with an overview of physiologic/medical sequelae of cancer diagnosis and treatment and the grading of late effects. A large and growing community of cancer survivors is one of the major achievements of cancer research over the past 3 decades. Both length and quality of survival are important endpoints. Many cancer survivors are at risk for and develop physiologic and psychosocial late and long-term effects of cancer treatment that may lead to premature mortality and morbidity. Interventions-therapeutic and lifestyle-may carry the potential to treat or ameliorate these late effects and must be developed, examined, and disseminated if found effective.

Oncologists' and primary care physicians' awareness of late and long-term effects of chemotherapy: implications for care of the growing population of survivors.

PURPOSE: The population of cancer survivors is large and growing. Yet after successful completion of treatment, many experience chemotherapy-related late or long-term effects (LEs). The extent to which physicians are aware of LEs is unknown. METHODS: We conducted a nationally representative survey of 1,130 oncologists and 1,072 primary care providers (PCPs). Respondents were asked to select the LEs they had either observed or seen reported for five chemotherapy agents used to treat breast and colon cancers. We described and compared oncologists' and PCPs' awareness of the specified LEs. Using multivariate logistic regression models, we determined predictors of physicians' awareness of the main LEs associated with the agents. RESULTS: Almost all oncologists (95%) reported awareness of cardiac dysfunction as an LE of doxorubicin and peripheral neuropathy as an LE of paclitaxel (97%) and oxaliplatin (97%). These LEs were reported by 55%, 27%, and 22% of PCPs, respectively. Most oncologists reported awareness of premature menopause (71%) and secondary malignancies (62%) as LEs of cyclophosphamide, compared with only 15% and 17% of PCPs, respectively. Main LEs associated with all four agents were identified by 65% of oncologists and only 6% of PCPs. CONCLUSION: Although more than half of PCPs were aware of cardiac dysfunction as an LE of doxorubicin, awareness of other LEs was limited. Because PCPs may not be directly exposed to chemotherapy-related LEs, oncologists must communicate this information to PCPs as patients transition to primary care settings. Education for all providers caring for the growing population of cancer survivors is needed.

Ethical conduct of palliative care research: enhancing communication between investigators and institutional review boards.

Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work.

Strategies to support recruitment of patients with life-limiting illness for research: the Palliative Care Research Cooperative Group.

CONTEXT: The Palliative Care Research Cooperative Group (PCRC) is the first clinical trials cooperative for palliative care in the U.S. OBJECTIVES: To describe barriers and strategies for recruitment during the inaugural PCRC clinical trial. METHODS: The parent study was a multisite randomized controlled trial enrolling adults with life expectancy anticipated to be one to six months, randomized to discontinue statins (intervention) vs. to continue on statins (control). To study recruitment best practices, we conducted semistructured interviews with 18 site principal investigators (PIs) and clinical research coordinators (CRCs) and reviewed recruitment rates. Interviews covered three topics: 1) successful strategies for recruitment, 2) barriers to recruitment, and 3) optimal roles of the PI and CRC. RESULTS: All eligible site PIs and CRCs completed interviews and provided data on statin protocol recruitment. The parent study completed recruitment of 381 patients. Site enrollment ranged from 1 to 109 participants, with an average of 25 enrolled per site. Five major barriers included difficulty locating eligible patients, severity of illness, family and provider protectiveness, seeking patients in multiple settings, and lack of resources for recruitment activities. Five effective recruitment strategies included systematic screening of patient lists, thoughtful messaging to make research relevant, flexible protocols to accommodate patients' needs, support from clinical champions, and the additional resources of a trials cooperative group. CONCLUSION: The recruitment experience from the multisite PCRC yields new insights into methods for effective recruitment to palliative care clinical trials. These results will inform training materials for the PCRC and may assist other investigators in the field.

Racial and ethnic disparities in patient-provider communication, quality-of-care ratings, and patient activation among long-term cancer survivors.

PURPOSE: We examined racial and ethnic disparities in patient-provider communication (PPC), perceived care quality, and patient activation among long-term cancer survivors. METHODS: In 2005 to 2006, survivors of breast, prostate, colorectal, ovarian, and endometrial cancers completed a mailed survey on cancer follow-up care. African American, Asian/Pacific Islander (Asian), Hispanic, and non-Hispanic white (white) survivors who had seen a physician for follow-up care in the past 2 years (n = 1,196) composed the analytic sample. We conducted linear and logistic regression analyses to identify racial and ethnic differences in PPC (overall communication and medical test communication), perceived care quality, and patient activation in clinical care (self-efficacy in medical decisions and perceived control). We further examined the potential contribution of PPC to racial and ethnic differences in perceived care quality and patient activation. RESULTS: Compared with white survivors (mean score, 85.16), Hispanic (mean score, 79.95) and Asian (mean score, 76.55) survivors reported poorer overall communication (P = .04 and P < .001, respectively), and Asian survivors (mean score, 79.97) reported poorer medical test communication (P = .001). Asian survivors were less likely to report high care quality (odds ratio, 0.47; 95% CI, 0.30 to 0.72) and reported lower self-efficacy in medical decisions (mean score, 74.71; P < .001) compared with white survivors (mean score, 84.22). No disparity was found in perceived control. PPC was positively associated with care quality (P < .001) and self-efficacy (P < .001). After adjusting for PPC and other covariates, when compared with whites, Asian disparities remained significant. CONCLUSION: Asian survivors report poorer follow-up care communication and care quality. More research is needed to identify contributing factors beyond PPC, such as cultural influences and medical system factors.

Follow-up care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers.

INTRODUCTION: Post-treatment follow-up represents a crucial aspect of quality cancer care; however, data are lacking regarding follow-up care experiences, perception of provider involvement in care, and perceived quality of care from diverse samples of long-term survivors diagnosed as adults. METHODS: Questionnaires were mailed in 2005 to 2006 to breast, prostate, colorectal, endometrial, and ovarian cancer survivors (4 to 14 years after diagnosis), sampled from California SEER cancer registries. RESULTS: Most survivors (n = 1,490) reported recent follow-up care (68.7%), generally from oncology specialists only (47.4%) or shared between oncology and primary care providers (PCPs; 27.6%). Most survivors reported follow-up care advice (79.9%); fewer reported late-effects advice or receipt of a treatment summary (41.7% and 19.9%, respectively). Survivors who identified a PCP as their main follow-up care physician were as likely as those identifying an oncology specialist to rate their care as high quality (odds ratio [OR], 2.56; 95% CI, 0.98 to 6.74); however, survivors who could not identify a main follow-up care provider were less likely to report high-quality care (OR, 0.20; 95% CI, 0.08 to 0.50). Compared with follow-up care by an oncology specialist only, care by a PCP only was associated with a lower quality-of-care rating (OR, 0.34; 95% CI, 0.13 to 0.91), but there was no significant difference in quality rating by survivors when care was shared by an oncology specialist and PCP compared with an oncology specialist only. CONCLUSION: Long-term survivors commonly report follow-up care years after their diagnosis; however, many patients' follow-up lacks important components. Care is more likely to be rated as high quality when one main provider is identified and an oncology specialist is involved.

Training and career development in palliative care and end-of-life research: opportunities for development in the U.S.

There has been a dramatic increase in attention to the field of palliative care and end-of-life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article was to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it.

Cardiovascular risk factors among long-term survivors of breast, prostate, colorectal, and gynecologic cancers: a gap in survivorship care?

PURPOSE: Individuals diagnosed with high survival cancers will often die of cardiovascular disease (CVD) rather than a recurrence of their cancer, yet CVD risk factors may be overlooked during survivorship care. We assess the prevalence of CVD risk factors among long-term cancer survivors and compare results to survey data from the general population in the same geographic region. We also characterize how often at-risk survivors discuss CVD-related health behaviors with their health care providers. METHODS: Survivors (n = 1,582) of breast, prostate, colorectal, and gynecologic cancers, 4-14 years after diagnosis, were recruited from two California cancer registries for a cross-sectional mail survey. We assessed CVD risk factors, including smoking, body mass index, physical inactivity, hypercholesterolemia, hypertension, and diabetes, as well as report of discussions with health care providers about diet, exercise, smoking, and lifestyle change assistance. RESULTS: With the exception of current smoking, CVD risk factors were more common among survivors than the general adult population. Of survivors, 62.0 % were overweight or obese, 55.0 % reported hypertension, 20.7 % reported diabetes, 18.1 % were inactive, and 5.1 % were current smokers. Compared to white, non-Hispanic survivors, Hispanic (b = 0.37, p = 0.007) and African-American (b = 0.66, p < 0.0001), but not Asian, survivors reported significantly more risk factors. One in three survivors with one or more risk factors for CVD did not report a health promotion discussion with their health care providers. CONCLUSIONS: CVD risk factors are common among long-term survivors, but many at-risk survivors may not discuss lifestyle prevention with their health care team. Primary care and oncology should work together to deliver optimal survivorship care that addresses CVD risk factors, as well as prevalent disease. IMPLICATIONS FOR CANCER SURVIVORS: Cardiovascular disease may compromise cancer survivors' long-term health and well-being, yet cardiovascular risk factors may be overlooked during survivorship care. We document that CVD risk factors are common among cancers survivors, yet nearly a third of survivors do not report health promotion discussions with their medical teams. Survivors should be aware of their cardiovascular risk factors and initiate discussions with their medical teams about health promotion topics, if appropriate.

Double Jeopardy? Age, Race, and HRQOL in Older Adults with Cancer.

Understanding the post-treatment physical and mental function of older adults from ethnic/racial minority backgrounds with cancer is a critical step to determine the services required to serve this growing population. The double jeopardy hypothesis suggests being a minority and old could have compounding effects on health. This population-based study examined the physical and mental function of older adults by age (mean age = 75.7, SD = 6.1), ethnicity/race, and cancer (breast, prostate, colorectal, and gynecologic) as well as interaction effects between age, ethnicity/race and HRQOL. There was evidence of a significant age by ethnicity/race interaction in physical function for breast, prostate and all sites combined, but the interaction became non-significant (for breast and all sites combined) when comorbidity was entered into the model. The interaction persisted in the prostate cancer group after controlling for comorbidity, such that African Americans and Asian Americans in the 75-79 age group report lower physical health than non-Hispanic Whites and Hispanic Whites in this age group. The presence of double jeopardy in the breast and all sites combined group can be explained by a differential comorbid burden among the older (75-79) minority group, but the interaction found in prostate cancer survivors does not reflect this differential comorbid burden.

Health information needs and health-related quality of life in a diverse population of long-term cancer survivors.

OBJECTIVE: To investigate health information needs and their association with health-related quality of life (HRQOL) in a diverse, population-based sample of long-term cancer survivors. METHODS: We analyzed health information needs from 1197 cancer survivors 4-14 years post-diagnosis drawn from two cancer registries in California. Multivariable regression models were used to identify factors associated with endorsement of total number and different categories of needs. The relationship between number of needs and HRQOL and effect modification by confidence for obtaining information was examined. RESULTS: Survivors reported a high prevalence of unmet information needs in the following categories: side effects & symptoms: 75.8%; tests & treatment: 71.5%; health promotion: 64.5%; interpersonal & emotional: 60.2%; insurance: 39.0%; and sexual functioning & fertility: 34.6%. Survivors who were younger, non-White, and did not receive but wanted a written treatment summary reported a higher number of needs. Number of information needs was inversely related to mental well-being, particularly for those with low confidence for obtaining information (P<0.05). CONCLUSION: These patterns suggest disparities in access to important health information in long-term survivors and that affect HRQOL. PRACTICE IMPLICATIONS: Findings suggest a need for tailored interventions to equip survivors with comprehensive health information and to bolster skills for obtaining information.

Forgoing medical care because of cost: assessing disparities in healthcare access among cancer survivors living in the United States.

BACKGROUND: Many US cancer survivors live years after diagnosis, which emphasizes the importance of healthcare access for survivors. It is not known whether having cancer has an impact on disparities in healthcare access that are present in the general population. The objective of this study was to examine the prevalence of forgoing care because of financial concerns in a representative sample of US adults to determine whether cancer history and race/ethnicity are associated with the likelihood of forgoing medical care. METHODS: Data from the US National Health Interview Survey (NHIS) from 2003 to 2006 were used to identify 6602 adult cancer survivors and 104,364 individuals who had no history of cancer. Self-reports of forgoing medical care services because of cost were analyzed according to cancer history and race/ethnicity using multivariate logistic regression. RESULTS: The prevalence of forgoing care because of cost among cancer survivors was 7.8% for medical care, 9.9% for prescription medications, 11.3% for dental care, and 2.7% for mental healthcare. Cancer survivors aged<65 years were more likely to delay or forego all types of medical care compared with adults who did not have a history of cancer. Hispanic and black cancer survivors were more likely to forego prescription medications and dental care than white survivors. Disparities among cancer survivors largely were reflective of those in the general adult population. CONCLUSIONS: More than 2 million US cancer survivors did not get 1 or more needed medical services because of financial concerns during the studied period. Future research needs to examine the impact of forgoing care on survivors' quality of life and survival.

A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group.

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.