Evidence in palliative care research: how should it be gathered? (original) (raw)
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Journal of Pain and Symptom Management, 2015
Context. The challenges of palliative care clinical trial recruitment are well documented. Objectives. The aim of the study was to review tested strategies to improve recruitment to trials of people with a range of conditions who may access palliative care services but are not explicitly stated to be ''palliative.'' Methods. This was a systematic review with narrative description. The Cochrane, Embase, PubMed, PsycINFO, and CINAHL electronic databases were searched (English; January 2002 to February 2014) for quasi-experimental and randomized controlled trials (RCTs) testing the effect of recruitment strategies on accrual to clinical trials of people with organ failure and cancer. Titles, abstracts, and retrieved articles were screened by two researchers and categorized by recruitment challenge: 1) patients with reduced cognition, 2) those requiring emergency treatment, and 3) willingness of patients and clinical staff to contribute to trials. Results. Of 549 articles identified, 15 were included. Thirteen reported RCTs and two papers reported three quasiexperimental studies. Five were cluster RCTs of recruiting sites/institutions. One was a randomized cluster, crossover, feasibility study. Seven studies recruited patients with cancer. Others included patients with dementia, stroke, cardiovascular disease, diabetes, frail elderly, and bereaved carers. Some interventions improved recruitment: memory aid, contact before arrival, cluster consent, ''opt out'' consent. Others either reduced recruitment (formal mental capacity assessment) or made no difference (advance research directive; a variety of educational, supportive, and advertising interventions). Conclusion. Successful strategies from other disciplines could be considered by palliative care researchers. Tailored, efficient, evidence-based strategies must be developed, acknowledging that strategies with face validity are not necessarily the most effective.
Applying evidence to palliative care
Seminars in Oncology Nursing, 2005
To discuss the evidence-based practice process for palliative care, from defining a clinical problem to implementation and evaluation of an evidence-based practice change.
A Framework for Generalizability in Palliative Care
Journal of Pain and Symptom Management, 2009
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.
Challenges to and Lessons Learned from Conducting Palliative Care Research
Journal of Pain and Symptom Management, 2009
In response to a 2005 solicitation from the U.S. National Institutes of Health, 16 investigators received funding to test interventions that would reduce the barriers that prevent cancer patients from receiving adequate and appropriate symptom management therapies. Since the awards have been issued, the investigators have met two times and have identified a number of challenges to implementing their respective studies. A survey was conducted that focused on their experiences with hiring and retaining study personnel, gaining Institutional Review Board approval, incurring unexpected costs, challenges to accruing participants, and a listing of standard measures used in the study. The survey was completed online by the Principal Investigator for each project in late 2006 and the initial results were confirmed one year later by resending the initial survey and by a follow-up telephone call. All but one Principal Investigator completed the survey. Obtaining Institutional Review Board approval, hiring and recruiting research personnel, establishing subcontracts, and accruing research subjects were the primary challenges experienced by the investigators. This palliative care solicitation achieved more than its original intent of stimulating research in overcoming barriers to delivering cancer symptom management, palliative care and end-of-life care. From a survey on the challenges and issues that emerged from their projects, grantees were able to identify specific hurdles and their unique solutions that may help other investigators as they plan their program of research.
Defining the patient population: one of the problems for palliative care research
Palliative Medicine, 2006
There is a lack of clear definition and clear inclusion criteria in palliative care research. The aim of this study was to describe consequences of three inclusion criteria in the build up of different study populations, studied in terms of size, number of doctor-patient contacts and demographic characteristics. General practitioners received a questionnaire for all patients who died during the second Dutch National Survey of General Practice (n=2194), to determine whether (1) patients received non-curative treatment; (2) patients received palliative care; and (3) death was expected (total response rate=73%). The criterion 'death was expected' included most patients (62%) followed by 'palliative care' (46%) and 'noncurative treatment' (39%). Similarity between the definition-based populations was fair to moderate. More 'palliative care' and 'death was expected' in patients who had cancer than 'non-curative treatment' patients. The conclusions show substantial differences in populations according to the different inclusion criteria used to select them. Future research in palliative care should acknowledge the limitations of using certain inclusion criteria and explore potential bias. This is a NIVEL certified Post Print, more info at http://www.nivel.eu Borgsteede, S.D., Deliens, L., Francke, A., Stalman, W.A.B., Willems, D.L., Eijk, J.T.M. van, Wal, G. van der. Defining the patients population: one of the problems for palliative care research.
Palliative care for the management of chronic illness: a systematic review study protocol
BMJ open, 2012
Introduction Chronic illnesses are marked by fluctuations and variations over time. Individuals with chronic illness experience pain and other symptoms that are not always adequately managed. Their caregivers often have to deal with enormous burden as the illness progresses. Palliative care can serve as an intervention to manage chronic illness, not just at the end of life but also in the early phases of illness.