Jennifer Tieman

Changes in the Quantity and Level of Evidence of Palliative and Hospice Care Literature: The Last Century

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.

Multidisciplinary care planning in the primary care management of completed stroke: a systematic review

BackgroundChronic disease management requires input from multiple health professionals, both specialist and primary care providers. This study sought to assess the impact of co-ordinated multidisciplinary care in primary care, represented by the delivery of formal care planning by primary care teams or shared across primary-secondary teams, on outcomes in stroke, relative to usual care.MethodsA Systematic review of Medline, EMBASE, CINAHL (all 1990–2006), Cochrane Library (Issue 1 2006), and grey literature from web based searching of web sites listed in the CCOHA Health Technology Assessment List Analysis used narrative analysis of findings of randomised and non-randomised trials, and observational and qualitative studies of patients with completed stroke in the primary care setting where care planning was undertaken by 1) a multi-disciplinary primary care team or 2) through shared care by primary and secondary providers.ResultsOne thousand and forty-five citations were retrieved. Eighteen papers were included for analysis. Most care planning took part in the context of multidisciplinary team care based in hospitals with outreach to community patients. Mortality rates are not impacted by multidisciplinary care planning. Functional outcomes of the studies were inconsistent. It is uncertain whether the active engagement of GPs and other primary care professionals in the multidisciplinary care planning contributed to the outcomes in the studies showing a positive effect. There may be process benefits from multidisciplinary care planning that includes primary care professionals and GPs. Few studies actually described the tasks and roles GPs fulfilled and whether this matched what was presumed to be provided.ConclusionWhile multidisciplinary care planning may not unequivocally improve the care of patients with completed stroke, there may be process benefits such as improved task allocation between providers. Further study on the impact of active GP involvement in multidisciplinary care planning is warranted.

Improving search filter development: a study of palliative care literature

BackgroundIt is difficult to systematically search for literature relevant to palliative care in general medical journals. A previously developed search filter for use on OVID Medline validated using a gold standard set of references identified through hand searching, achieved an unacceptably low sensitivity (45.4%). Retrieving relevant literature is integral to support evidence based practice, and understanding the nature of the incorrectly excluded citations (false negatives) using the filter may lead to improvement in the filters performance.MethodsThe objectives were to describe the nature of subjects reflected in the false negative citations and to empirically improve the sensitivity of the search filter. A thematic analysis of MeSH terms by three independent reviewers was used to describe the subject coverage of the missed records. Using a frequency analysis of MeSH terms, those headings which could individually contribute at least 2.5% to sensitivity (occurring 19 or more times) were added to the search filter. All previously run searches were rerun at the same time as the revised filter, and results compared.ResultsThematic analysis of MeSH terms identified thirteen themes reflected in the missing records, none of them intrinsically palliative. The addition of six MeSH terms to the existing search filter (physician-patient relations, prognosis, quality of life, survival rate, treatment outcome and attitude to health) led to an increase in sensitivity from 46.3% to 64.7%, offset by a decrease in precision from 72.6% to 21.9%.ConclusionThe filters sensitivity was successfully increased using frequency analysis of MeSH terms, offset by a decrease in precision. A thematic analysis of MeSH terms for the false negative citations confirmed the absence of any intrinsically palliative theme or term, suggesting that future improvements to search filters for palliative care literature will first depend on better identifying how clinicians and researchers conceptualise palliative care. It is suggested that a constellation of parameters: stage of disease (advanced or active), prospect of cure (little or none), and treatment goals (primarily quality of life) may ultimately inform search strategies. This may be similarly true for chronic diseases, which share the inherent passage of time which marks them apart from acute, and therefore more readily identifiable, episodes of care.

Multiple sources: mapping the literature of palliative care

Palliative care is an increasingly important area of clinical practice and health service delivery. The heterogeneity of the patient population and the multidisciplinary nature of care draw on knowledge from many fields of clinical practice and academic enquiry. This has implications for the retrieval of evidence and literature and the spread of new knowledge in palliative care. This study shows that the CINAHL, Embase and PsycINFO bibliographic databases hold sizeable repositories of palliative care articles not indexed on Medline. It also highlights the number and range of journals publishing palliative care content. In 2005 alone, 1985 journals published 6983 items. These findings show the challenges for palliative care professionals in managing the complex evidence base for this diverse field of care and the importance of mechanisms that facilitate the identification of palliative care information. Dissemination strategies that ensure that new knowledge reaches the many audiences implicit in the range of journals publishing palliative care are also critical in supporting improvements in clinical practice and service delivery.

Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: community facilitator pilot.

Background: Although the unit of care in palliative care is defined as the patient and their family, there are few rigorous studies on how to improve support for family and friends as they take on the role of caregiver for someone at the end of life. Aim: Separate to patient evaluation and care, this pilot study aimed to define the feasibility and possible outcome measures to evaluate routine assessments and supports specifically for caregivers. Design: In a quasi-experimental design, two communities were included: one received standard specialist palliative care support and one additionally was allocated to a community network facilitator who assessed caregivers’ needs and helped mobilize the caregiver’s own support network or initiated contact with other community supports in three planned visits. Data were collected at baseline, 4 and 8 weeks using three caregiver assessment tools. Within group comparisons were made using Wilcoxon signed rank test and between group using the Mann–Whitney U-test. Participants: Sixty-six caregivers participated. Results: At 8 weeks, participants in the intervention arm showed significant within-group improvement in caregiver fatigue, sufficient support from others, decreased resentment in the role, greater confidence in asking for assistance and were better able to find resources and support. No between-group changes were seen in this pilot study. Conclusions: There were objective measures of improved support within the intervention group over time for caregivers through the active engagement of the community network facilitator. This pilot supports the case for an adequately powered study.

Integration, Coordination and Multidisciplinary Care: What can These Approaches Offer to Australian Primary Health Care?

Australias population is ageing and the consequential burden of chronic disease increasingly challenges the health system. This has raised interest in, and awareness of, approaches built on multidisciplinary teams and integrated and coordinated care in managing the complex care needs of patient groups such as the chronically ill or frail aged. A systematic investigation of the literature relating to these approaches provided the opportunity to explore the meaning of these terms and their potential application and relevance to the Australian primary health care setting. Five systematic reviews of a sentinel condition and an exemplar approach to coordinated and multidisciplinary care were completed. Common learnings from the individual reviews were identified. The literature suggests that approaches encouraging a coordinated and multidisciplinary plan of care for individual patients and/or particular populations may improve a variety of outcomes. There are many methodological considerations in conducting reviews of complex interventions and in assessing their applicability to the Australian health system.

Development of a heart failure filter for Medline: an objective approach using evidence-based clinical practice guidelines as an alternative to hand searching.

BackgroundHeart failure is a highly debilitating syndrome with a poor prognosis primarily affecting the elderly. Clinicians wanting timely access to heart failure evidence to provide optimal patient care can face many challenges in locating this evidence.This study developed and validated a search filter of high clinical utility for the retrieval of heart failure articles in OvidSP Medline.MethodsA Clinical Advisory Group was established to advise study investigators. The study set of 876 relevant articles from four heart failure clinical practice guidelines was divided into three datasets: a Term Identification Set, a Filter Development Set, and a Filter Validation Set. A further validation set (the Cochrane Validation Set) was formed using studies included in Cochrane heart failure systematic reviews. Candidate search terms were identified via word frequency analysis. The filter was developed by creating combinations of terms and recording their performance in retrieving items from the Filter Development Set. The filters recall was then validated in both the Filter Validation Set and the Cochrane Validation Set. A precision estimate was obtained post-hoc by running the filter in Medline and screening the first 200 retrievals for relevance to heart failure.ResultsThe four-term filter achieved a recall of 96.9% in the Filter Development Set; 98.2% in the Filter Validation Set; and 97.8% in the Cochrane Validation Set. Of the first 200 references retrieved by the filter when run in Medline, 150 were deemed relevant and 50 irrelevant. The post-hoc precision estimate was therefore 75%.ConclusionsThis study describes an objective method for developing a validated heart failure filter of high recall performance and then testing its precision post-hoc. Clinical practice guidelines were found to be a feasible alternative to hand searching in creating a gold standard for filter development. Guidelines may be especially appropriate given their clinical utility. A validated heart failure filter is now available to support health professionals seeking reliable and efficient access to the heart failure literature.

Use of advance directives by South Australians: results from the Health Omnibus Survey Spring 2012

Objective: To determine the prevalence of completion of advance directives (ADs) and wills by South Australians aged 15 years and over.

Key Characteristics of Palliative Care Studies Reported in the Specialized Literature

CONTEXT Although research activity in palliative care is rapidly increasing, the composition of published studies--in terms of significant research characteristics--has not yet been well described. OBJECTIVES To describe the topics of and funding for palliative care studies reported in the three hospice and palliative care journals with the highest impact factors (Journal of Pain and Symptom Management, Palliative Medicine, and Journal of Palliative Medicine). METHODS This was a substudy of a larger bibliographic study. The targeted journals were searched for 2007 using a previously validated Ovid MEDLINE filter for palliative care. All empirical palliative care studies were included. Articles were classified according to topics (palliative care patient, caregiver/family, health professional, service provision, tool development, healthy volunteer, medication compatibility, community), study type (intervention, nonintervention), country of origin, and funding source (pharmaceutical company, other funder, unfunded). RESULTS Of 409 citations identified, the search yielded 189 eligible articles. Most articles were descriptive/observational. Approximately half were unfunded. Caregivers, healthy volunteers, and health service research were the least frequent topics for research. Only five randomized controlled trials were reported. CONCLUSION Although there is a broad range of research undertaken in palliative care, few studies generate high-level evidence, with data showing a relative lack of funding for hospice and palliative care studies.

Refining a checklist for reporting patient populations and service characteristics in hospice and palliative care research.

CONTEXT In specialist hospice and palliative care services, variations occur in diagnoses and prognoses of subpopulations referred, service configuration, and the health systems delivering care. These three levels of variation limit the ability to generalize study findings. OBJECTIVES This article reports on coding one year of palliative care research using a previously developed checklist. The aims were to 1) quantify current reporting of factors related to generalizability in specialist palliative care research; 2) review and potentially refine the checklist in light of the first aim; 3) demonstrate the feasibility of collecting these data; and 4) set out simple processes to aid researchers in reporting, and clinicians in applying, new research evidence in hospice and palliative care. METHODS A previously published checklist (five domains, 14 core subdomains, and 24 noncore subdomains) was used to code all research articles (n=189) published in 2007 in the three leading palliative care research journals. RESULTS The most frequently reported subdomains were patient age, gender, and diagnosis; model of service delivery; and patient performance status. Data in subdomains, including time from referral to death, socioeconomic indices, and ethnicity, were rarely reported; none reported whole-of-service or whole-of-population data. In total, 2646 (189×14) core subdomains could have been reported. Data were provided in 28% (746/2646). CONCLUSION Checklists such as the Consolidated Standards of Reporting Trials evaluate study design, focusing mainly on internal validity. The proposed checklist deals with specific content of hospice and palliative care, focusing on external validity.