Challenges to and Lessons Learned from Conducting Palliative Care Research

Abstract

In response to a 2005 NIH solicitation, sixteen 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 (IRB) 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 (PI) 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 phone call. All but one PI completed the survey. Obtaining Institutional Review Board (IRB) 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 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.

End-of-life research on patients’ attitudes in Germany: a feasibility study

“…But it supports the findings of other studies that limited physical and emotional resources result in lower study participation [5]. This of course applies to all research but is a point especially relevant to research in palliative care [2,9,10].…”

“…The barriers for end-of-life research compare well to international experience [5,10]. In the US experience with SAHD, a minority of 22% of all admitted patients could be assessed [1].…”

“…Palliative care research by the nature of the severity of the clinical situation faces obstacles, which may be even more pronounced when researching patients' attitudes towards their approaching death including their attitudes towards euthanasia or hastened death [10,13]. In clinical routine, this topic is brought up by the patients, but, in a research protocol, the researcher may be forced to name it upfront.…”

Clinical Effectiveness of Online Training in Palliative Care of Primary Care Physicians

“…Our study offered teaching credits and financial incentives to PCPs recruiting patients. 11 Although the difficulty of conducting research in patients who require PC has been widely acknowledged, with losses up to 60%, 24 patients show a high tendency to take part in noninvasive studies, mainly focused on symptom control and QOL; they are willing to complete questionnaires, and are more likely to get involved if their physician and caregiver are also involved in the research. 25,26 The advantages of using online training over the traditional lecture format are: active learner involvement, flexibility, interaction and dissemination capabilities, learner satisfaction, and reduced cost.…”

The effect of caring on post-bereavement outcome: Research gaps and practice priorities

“…Issues affecting research include the difficulties in recruiting and retaining participants and the challenges in gaining ethical approval. 37 The studies on caring and post-bereavement distress have tended to overlook that, as a consequence of caring for a dying loved one, family caregivers may be highly distressed upon bereavement.Thus, even if a former caregiver's distress decreases over time, it cannot necessarily be concluded that this is a return to 'normal. '…”