Changes in the Quantity and Level of Evidence of Palliative and Hospice Care Literature: The Last Century
Publication: Journal of Clinical Oncology
Abstract
Purpose
To objectively quantify the literature and the clinical trial basis for palliative and hospice practice given a perception that its evidence base is not well developed.
Methods
Using Ovid Medline, the study looked at cumulative and absolute numbers of articles in the general medical literature and the palliative and hospice care literature. The same comparisons were made exploring clinical trials from 1902 to 2005. Data were collated in five year groups from 1970 onward using a highly specific search phrase.
Results
The proportion of all Ovid Medline publications relating to palliative and hospice care rose from 0.08% in 1970 to 0.38% of the literature in 2005. In the same time, clinical trials increased from 0.96% to 7.22% of the palliative care literature published. By 2005, one in every 122 clinical trials published in the literature as a whole was in palliative or hospice care. The rate of growth in palliative care clinical trials as a proportion of all palliative and hospice publications was on average 1.4 times greater than in the corresponding general literature. More than one half of these studies were reported in just 43 journals, most of which were not specialist palliative and hospice care journals.
Discussion
Given the diversity of journals in which clinical studies related to hospice and palliative care appear, there is a key challenge for clinicians in finding ways that will allow currency of practice in a broad and rapidly changing field.
Introduction
Peer-reviewed literature supports evidence-based practice by providing systematic access to the corpus of research that enables clinicians and policy makers to evaluate current practice, proposed innovations, or advances in practice. Scholarly publication provides a vital mechanism whereby research evidence and new knowledge can be evaluated by experts using peer review and communicated to the health community to inform their clinical practice. Examining bibliographic databases, such as Medline, can reveal changes in the nature of publications relating to a biomedical field or discipline. Publication and indexing patterns may contribute to our understanding of how a discipline develops over time.1 Clinical trial publication patterns may be particularly revealing, given they are regarded as providing the best evidence for efficacy of therapeutic interventions.
Palliative and hospice care, the focus of this research, is still a relatively young discipline. The first academic chair in palliative medicine in the world was appointed in 1988 in Australia, while it was only in 2006 that palliative and hospice medicine was recognized as a medical subspecialty in America.2 Palliative care is a multidisciplinary field of practice drawing on various specialties and academic fields as well as building its own distinct body of knowledge and practice.3 Palliative care is provided across many disease trajectories and utilizes different treatments in the management of these complex care needs. There is no single agreed time or other clinical indicator for referral of people with a life-limiting illness to specialized hospice and palliative care services (SHPCS), yet it is a referral-dependent specialty. The majority of referrals from around the world continue to be for people with cancer. Its evolution in different health settings has led to very different practices around the world, and the clinician base for the first generation of practitioners has also come from a wide range of backgrounds including internal medicine, family medicine/general practice, psychiatry, and anesthetics. Its literature and evidence resources are drawn from all specialties and sub-specialties, just as the clinical care needs of patients with life-limiting illness span all diseases and manifest physical, social, emotional, and existential issues.
This means there is no single academic home for palliative care and no single repository of research to inform the continuing development of the specialty. Understanding how the literature and evidence base has changed could contribute to an understanding of how the discipline has developed and evolved, and importantly, where further priority-driven efforts are needed.4,5
In palliative care, there have been calls for a change to the level of evidence required for the evaluation of new clinical or service interventions, citing the difficulty in acquiring such data.6-8 Implicit in some of these criticisms is the concept that there is a poor evidence base for palliative and hospice care. These concerns may reflect the breadth of palliative care, the diversity of journals that report research findings, and the poor coordination of research efforts when compared with other clinical disciplines.9
This article evaluates overall changes in the quantity and level of evidence relating to the palliative care literature appearing in refereed journals. It seeks to answer two questions: what has been the growth over time of indexed palliative- and hospice-relevant literature in absolute terms, and relative to overall citation growth rate in Medline; and has there been an increase in the number of palliative-relevant clinical trials (as a measure of level of evidence for interventions) reported over time?
Methods
In this systematic bibliographic review, all searching was undertaken using Ovid Medline and completed on June 18 and June 19, 2008. The search strategy used to identify relevant palliative care literature was the Boolean expression (palliat$ or hospice$ or “terminal care”).af. (referred to as the palliative search). This combination of terms has been used previously to examine the coverage of relevant literature in databases.10-12 In a study validating a palliative care search filter, these three terms achieved a specificity of 99.97% in retrieving by electronic search, articles that had been independently identified as palliative from a hand search of a set of general biomedical journals.11 Therefore, these terms represent a robust and validated strategy for the retrieval of palliative care literature.
To define the quantity of literature directly related to palliative and hospice care, the search was restricted to year of publication 1902 to 1970, and then extended incrementally in 5 yearly intervals (ie, 1902 to 1970, 1902 to 1975 … 1902 to 2005). Detailed published Medline indexing statistics were obtained, providing cumulative total citation counts for Medline at each of the consecutive 5-year cutoff point used earlier, namely 1970, 1975 up to 2005.13 Total cumulative retrieved palliative citations counts at each cutoff point were expressed as a percentage of overall Medline citations (ie, total palliative citations as at 1970/total Medline citation counts as at 1970, at 1975 and so forth, up until 2005).
The changes in the levels of evidence that have been generated for interventions in palliative and hospice care were evaluated by limiting the retrieved palliative search records to those tagged with the exploded MeSH term of clinical trials [publication type].14 Retrieved records were downloaded into an EndNote (Thomson Reuters; Carlsbad, CA) file for analysis.
A frequency analysis of the number of clinical trials by journal was carried out to determine how many, and which, journals contributed 50% of all palliative care clinical trials to the literature. A further analysis to determine which journals had an annual palliative care clinical trial publication rate (APCCTPR) of greater than one was then completed. This rate was determined by dividing the total number of clinical trials published in each journal title from the start of the quinquennium period or from the year of first publication, if after 1970.
Finally, to explore differences between journals and to investigate whether new journals might consolidate publication into discipline specific titles, an APCCTPR for the last 5 years alone was calculated.
Results
With regard to the changes in palliative care citations over time, the palliative search retrieved 0.08% (1,983 of 2,466,842) of all Ovid Medline citations as at 1970. This percentage rose each year to and including 2005, where it reached 0.38% (57,488 of 5,286,272 citations). The raw data for each time period is presented in Table 1.
Exploring clinical trial publication rates is also revealing. In 1970, palliative care clinical trials formed 0.96% (19 of 1,983) of all palliative care literature. In the 5 years to 2005, this percentage had risen to 7.22% (1,168 of 16,180; Table 2). In comparison, for all Medline citations only 0.45% (10,980 of 2,466,842) were clinical trials in 1970 and this only rose to 5.06% (142,607 of 2,816,676) for the 2001 to 2005 period. The proportion of palliative care citations that were clinical trials therefore was higher than for all citations at baseline and across each 5-year period.
Palliative care clinical trials as a percentage of all clinical trials also rose over this period from 0.17% (19 of 10,980) in 1970 to 0.82% (1,168 of 142,607) in the 5 years to 2005 (Table 2).
By the end of 2005, one in every 2,412 items in the total Medline literature was a palliative care clinical trial, one in every 122 clinical trials was a palliative care clinical trial, and one in every 14 palliative care articles was a palliative care clinical trial.
An analysis of the total of 3,171 palliative care clinical trial citations up until 2005 showed that eight journals accounted for 25.0% of trials (763 of 3,171), 43 journals accounted for 50.0% (1,584 of 3,171), 164 journals accounted for 75.0% (2,376 of 3,171), and 712 journals accounted for all trials (3,171 of 3,171). More than one half of the identified journals (51.3%; 365 of 712) published one article only. The Journal of Pain & Symptom Management (JPSM) published the largest number of palliative care clinical trials (173 of 3,171; 5.5%), with Cancer (110 of 3,171; 3.5%) and Journal of Clinical Oncology (109 of 3,171; 3.4%) between them accounting for almost one in eight clinical trials published. General medical journals publishing the most palliative care clinical trials were The Lancet (36 of 3,171; 1.1%), BMJ (20 of 3,171; 0.63%), Journal of the American Medical Association (12 of 3,171; 0.3%), and New England Journal of Medicine (12 of 3,171; 0.3%).
From the publication frequency analysis, 19 journals were identified that had an APCCTPR of more than one per year. These are included in Table 3 together with the year in which each journal was first published.
When palliative clinical trial content was expressed as percentage of all articles published by these journals in the time period from 1970 to 2005, 10 journals showed a percentage higher than 1.00% of the journal's total content with Palliative Medicine (8.96%) being the highest followed by the Journal of Pain & Symptom Management (8.24%), Journal of Palliative Medicine (3.72%), and Supportive Care in Cancer (2.67%; Table 3).
With regard to overall APCCTPR, the Journal of Pain & Symptom Management demonstrated the highest rate of 8.65 per year of publication. Four other palliative specialist journals had a rate over 1.0: Palliative Medicine (4.89), Journal of Palliative Medicine (2.75), Supportive Care in Cancer (2.46), and Journal of Palliative Care (1.14). No general medical journal had an APCCTPR greater than 1.0; Lancet was the mostly highly ranked with a rate of 1.0 and BMJ was next with a rate of 0.56.
The APPCTPR for all journals, except the Journal of Palliative Care, was higher for the last 5 years than for the overall period suggesting that there is a continuing and possibly expanding interest in publishing palliative care clinical trials in this range of journals (Table 3).
Discussion
This study demonstrates that the absolute and relative volume of palliative care literature has increased notably over the publication period (1970 to 2005). Using only the three terms (palliat$ OR hospice$ OR “terminal care”) is likely to underestimate the true extent of citations relevant to palliative care. However, using a search strategy with a validated high specificity provides confidence that the citations being retrieved are truly palliative in nature.
Within an expanding palliative care literature base, the study shows that the component of clinical trial based evidence is growing more rapidly than the palliative care literature overall. Given that the clinical trial publication type is used to index original reports of the conduct or results of clinical studies looking for evidence of favorable or unfavorable effects,14 these citation levels indicate that the volume of research evidence available for clinical practice must be growing also. While it was not possible to evaluate the quality, content, or clinical utility of the individual palliative care clinical trials in this research, these results provide a prime facie case that there is a substantial evidence base for palliative care.
This is somewhat surprising given continuing comments about the difficulty in generating an evidence base in palliative or hospice care.6-8 It may suggest that given the extraordinary breadth of palliative care's potential required knowledge even this rapidly expanding evidence base has not filled the need for evidence to guide clinical practice. It may also indicate that there is a lack of awareness of the existing literature resources and an inability to find and access this evidence to guide clinical practice and service delivery. While it may be understandable given the breadth of palliative care practice15 that there are more than 700 journals with at least one palliative care clinical trial citation, it adds to the complexity of identifying and retrieving published clinical evidence.
The findings in this study confirm that palliative care is consolidating its own knowledge base. Time is one fundamental requirement for establishing a body of new knowledge in an emerging discipline or medical subspecialty. Performing the studies, and finding the most effective way of communicating the findings to clinicians and other academics whose work encompasses palliative care, remains a challenge even today.16
The accelerating rate of palliative care publication and of palliative care clinical trial publication may reflect a developing clinical and research capacity within the field as well as policy recognition of the importance of palliative care given a changing disease burden within a community with more complex chronic conditions than ever before.17,18
The palliative care clinical trial publication rates show that researchers in palliative care are using study designs widely accepted as being the gold standard for evaluating new interventions to inform practice. This highlights the ability of those working in palliative care to conduct clinical research despite perceived difficulties in recruiting and retaining people in studies toward the end of life. Analysis of this palliative care literature by authors, institutions, or geographical regions could further help identify potential clusters of collaborative research within palliative care, highlight emerging research topics, and inform policy and decision makers regarding the state of research activity in specific areas.4,9,19,20
The continuing close relationship between cancer and palliative care is clearly reflected in the clinical trials literature. Nearly two thirds of the journals that accounted for 50% of palliative care clinical trials publications are cancer specific (eg, Cancer, Journal of Clinical Oncology, and Annals of Oncology). Thirteen of 19 journals that published at least one palliative care clinical trial each year are cancer specific while no general medical journal published more than one palliative care clinical trial each year.
Identifying where literature and clinical studies are being published can help to inform palliative care clinicians and researchers where to search and where to publish palliative care research findings. These findings will be included as a webpage on publishing options within the CareSearch Web site (www.caresearch.com.au), an online evidence-based resource for the palliative care community.21
Given the rapidly expanding evidence base, palliative care practitioners now face a set of problems related to the size of the literature. In this study alone, 57,488 palliative care citations and 3,171 palliative care clinical trials were identified. How to effectively access, aggregate, and assimilate this growing body of knowledge will be particularly challenging given palliative care's relationship to multiple disease trajectories and emerging interventions that can improve the clinical course of the life-limiting illnesses. Improving literature searching and critical appraisal skills, developing evidence summaries and reviews, and facilitating topic-based searching could all be important strategies. There are already some initiatives within the palliative care community to facilitate the dissemination of clinical information, such as the evidence newsletter, PC_FACS,22 or the topic-based PubMed searches in the CareSearch Web site.
Limitations
There are limitations to this study. Bibliometric analysis was only carried out in Ovid Medline. Additional articles indexed in PubMed (for example, those published in BMC Palliative Care and other non–Medline-indexed journals) are excluded. No comment can be made about the growth in quantity and quality of palliative care literature published in other key databases, such as Embase, CINAHL or PsycINFO. While these databases may jointly index some of the journals indexed by Medline, they are likely to contain unique literature also. Consequently, current findings are likely to underestimate the absolute number of palliative care publications.
This study uses a common search over time. However, the very specific search terms may have underestimated the palliative care literature as different disciplines may describe their work in terms of their discipline concepts (eg, bereavement outcomes rather than palliative care) and may not have captured work that was occurring in the early period and described in other ways (eg, care of the dying). Earlier research has already shown that a large volume of palliative care relevant literature is not captured by search strategies both within the general and the specialist literature.12,23 Therefore, given the highly specific search used, there could be a systematic underestimation of the total number of palliative care publications. Further, the rates of palliative care abstracts being converted to peer-reviewed publications seem lower than other disciplines across health care.24
Implications for Policy and Practice
These findings suggest that there is a strong evidence base for the practice of hospice and palliative care. Given the breadth of sources identified as contributing to this evidence base, it may be that there is still a great deal of directly relevant data that need to be incorporated into hospice and palliative care policy and practice. The challenge raised by these findings is that clinicians providing hospice or palliative care as part of their practice have no simple way of identifying the evolving evidence base. Effective retrieval would require a comprehensive strategy actively searching general and specialist clinical and research literature. The challenge of not having one set of subspecialist journals on which to rely is magnified given a rate of growth for palliative care clinical trials of 1.4 times the general clinical trials literature over the last 35 years.
Implications for Research
The findings of this study highlight that there is much work to still be done in health informatics to improve the accessibility of clinical information relevant to hospice and palliative care practice. In an era of professional practice committed to using the available evidence base whenever possible, systematic reviews and other syntheses of data will not cover the whole field of endeavor unless there are continued improvements in strategies to identify all the relevant sources of hospice and palliative care literature. The search strategies for the general clinical literature need to be further developed to make this a realistic aim for every group doing systematic reviews in this field.
Summary
The palliative care literature is in a period of rapid expansion in terms of both quantity and the level of evidence for interventional studies. The number of clinical trials being published suggests a growth in both research capacity and a growing momentum to define best practice. However, this increase in resource also means that the discipline may soon face new problems in the aggregation, communication, and integration of the volume of information.
Authors’ Disclosures of Potential Conflicts of Interest
The author(s) indicated no potential conflicts of interest.
Author Contributions
Conception and design: Jennifer Tieman, Ruth Sladek, David Currow
Collection and assembly of data: Ruth Sladek
Data analysis and interpretation: Jennifer Tieman, Ruth Sladek
Manuscript writing: Jennifer Tieman, Ruth Sladek, David Currow
Final approval of manuscript: Jennifer Tieman, Ruth Sladek, David Currow
| Measure | Year | ||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| ≤ 1970 | ≤ 1975 | ≤ 1980 | ≤ 1985 | ≤ 1990 | ≤ 1995 | ≤ 2000 | ≤ 2005 | ||||||||
| P, No. | 1,983 | 4,112 | 7,766 | 12,575 | 19,450 | 28,692 | 41,308 | 57,488 | |||||||
| M, No. | 2,466,842 | 3,608,369 | 4,925,555 | 6,410,201 | 8,223,873 | 10,226,019 | 12,469,596 | 15,286,272 | |||||||
| P/M, % | 0.08 | 0.11 | 0.16 | 0.20 | 0.24 | 0.28 | 0.33 | 0.38 | |||||||
Abbreviations: P, palliative citations; M, all Medline citations.
| Citation | Baseline at 1970* | 1971-1975 | 1976-1980 | 1981-1985 | 1986-1990 | 1991-1995 | 1996-2000 | 2001-2005 |
|---|---|---|---|---|---|---|---|---|
| Total medline citations | 2,466,842 | 1,141,527 | 1,317,186 | 1,484,646 | 1,813,672 | 2,002,146 | 2,243,577 | 2,816,676 |
| All clinical trials | 10,980 | 15,381 | 22,166 | 30,565 | 48,546 | 80,957 | 120,044 | 142,607 |
| Palliative citations | 1,983 | 2,129 | 3,654 | 4,809 | 6,875 | 9,242 | 12,616 | 16,180 |
| Palliative care clinical trials | 19 | 38 | 86 | 141 | 262 | 561 | 974 | 1,168 |
| MCT, % | 0.45 | 1.35 | 1.68 | 2.06 | 2.68 | 4.04 | 5.35 | 5.06 |
| PCT, % | 0.96 | 1.78 | 2.35 | 2.93 | 3.81 | 6.07 | 7.72 | 7.22 |
| Ratio PCT/MCT | 2.13 | 1.32 | 1.40 | 1.42 | 1.42 | 1.50 | 1.44 | 1.43 |
| Clinical trials that are palliative, % | 0.17 | 0.25 | 0.39 | 0.46 | 0.54 | 0.69 | 0.81 | 0.82 |
Abbreviations: MCT, Medline records that are clinical trails; PCT, palliative citations that are clinical trials.
*
Baseline figures include all citations prior to and including 1970 and hence are not equal to a 5-year period.
| Journal Title | Palliative Clinical Trial Citations | All Citations | First Year of Journal | Palliative Care Clinical Trial Content (%) | Annual Palliative Care Clinical Trial Publication Rate | ||
|---|---|---|---|---|---|---|---|
| Overall | Last 5 Years Only | ||||||
| Journal of Pain & Symptom Management | 173 | 2,099 | 1986 | 8.24 | 8.65 | 17.2 | |
| Cancer | 110 | 28,295 | 1948 | 0.39 | 3.06 | 4.6 | |
| Journal of Clinical Oncology | 109 | 11,097 | 1983 | 0.98 | 4.74 | 8.6 | |
| Palliative Medicine | 93 | 1,038 | 1987 | 8.96 | 4.89 | 11.6 | |
| Annals of Oncology | 82 | 4,894 | 1990 | 1.68 | 5.13 | 7.4 | |
| International Journal of Radiation Oncology, Biology, Physics | 70 | 13,014 | 1975 | 0.54 | 2.26 | 3.2 | |
| British Journal of Cancer | 69 | 14,393 | 1947 | 0.48 | 1.92 | 5.6 | |
| Pain | 57 | 5,415 | 1975 | 1.05 | 1.84 | 2.0 | |
| Gastrointestinal Endoscopy | 45 | 7,912 | 1965 | 0.57 | 1.25 | 3.2 | |
| Radiotherapy & Oncology | 44 | 3,348 | 1983 | 1.31 | 1.91 | 3.4 | |
| European Journal of Cancer | 44 | 6,851 | 1981 | 0.64 | 1.76 | 2.4 | |
| Anticancer Research | 41 | 10,788 | 1982 | 0.38 | 1.64 | 3.0 | |
| Supportive Care in Cancer | 32 | 1,199 | 1993 | 2.67 | 2.46 | 2.6 | |
| American Journal of Clinical Oncology | 32 | 2,958 | 1982 | 1.08 | 1.33 | 1.8 | |
| Lung Cancer | 29 | 1,920 | 1985 | 1.51 | 1.38 | 4.0 | |
| Journal of Palliative Care | 24 | 941 | 1985 | 2.55 | 1.14 | 0.8 | |
| Journal of Palliative Medicine | 22 | 592 | 1998 | 3.72 | 2.75 | 4.4 | |
| Clinical Oncology (Royal College of Radiologists) | 20 | 3,346 | 1989 | 0.60 | 1.18 | 2.4 | |
| Clinical Cancer Research | 14 | 6,619 | 1995 | 0.21 | 1.27 | 1.6 | |
*Excludes letters to the editor and book reviews.
published online ahead of print at www.jco.org on November 10, 2008
CareSearch palliative care knowledge network is a project funded by the Palliative Care Branch of the Commonwealth Department of Health and Ageing as part of the National Palliative Care Program.
Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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© 2008 by American Society of Clinical Oncology.
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Published in print: December 10, 2008
Published online: November 01, 2016
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Changes in the Quantity and Level of Evidence of Palliative and Hospice Care Literature: The Last Century. JCO 26, 5679-5683(2008).
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