What are patients' priorities for palliative care research? — a questionnaire study

Perkins, Paul; Booth, Sara; Vowler, Sarah L.; Barclay, Stephen

doi:10.1177/0269216307085180

Cited by 22 publications

(53 citation statements)

References 17 publications

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“…In a two phase study, Perkins et al (2007;) set out to identify research priorities of palliative care patients through focus group interviews and a survey with day therapy and hospice in-patients with cancer Table 3. Topics identified by staff and volunteers…”

Section: Discussionmentioning

confidence: 99%

An examination of the research priorities for a hospice service in New Zealand: A Delphi study

et al. 2015

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Objectives: Palliative care research is relatively diverse and prioritizing research in this field is dependent on multiple factors such as complex ethical decisions in designing and conducting the research; access to participants who may be deemed "vulnerable" and an increasingly medically focused approach to care. The aim of this study was to inform organizational decision-making and policy development regarding future research priorities for a hospice service in New Zealand.Methods: A modified three-round Delphi technique was employed. Participants were drawn from one dedicated specialist palliative care service that delivers care in the community, daycare, hospice inpatient, aged residential care, and acute hospital palliative care service. A purposive sample included palliative care staff (n ¼ 10, 18, 9, for rounds 1-3, respectively) volunteers (n ¼ 10, 12, 11); and patients and family carers (n ¼ 6, 8, for rounds 1 and 2). Patients and family carers were not involved in the third round.Results: At final ranking of six research themes encompassing 23 research topics were identified by staff and volunteers. These were: symptom management; aged care; education; community; patient and family; and bereavement support and young people. Patients and family carers agreed on four themes, made up of 10 research topics. These were: decision-making, bereavement and loss, symptom management; and recognition of need and response of service.Significance of results : The study generated a rich set of research themes and specific research topics. The perspectives of staff and volunteers are significantly different from those of patients and family members, in spite of the recognition by all concerned that palliative care services work within a philosophy of patient-centered care. Open discussion of ideas has the potential to engage both staff and patients and carers in quality improvement initiatives, and to reinforce the value of research for patient care.

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Section: Discussionmentioning

confidence: 99%

An examination of the research priorities for a hospice service in New Zealand: A Delphi study

et al. 2015

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“…There is a continuing ethical imperative to improve the clinical evidence for quality supportive and palliative care in areas that are of relevance to patients and their caregivers [17]. This audit, in preparing for a series of adequately powered phase III studies with embedded patient-defined clinical outcomes and cost-effectiveness analyses, provides a unique basis for estimating the population of potential participants.…”

Section: Discussionmentioning

confidence: 99%

Planning phase III multi-site clinical trials in palliative care: the role of consecutive cohort audits to identify potential participant populations

Currow

Shelby‐James

Agar

et al. 2009

Support Care Cancer

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Goals of Work:Multiple sites enable more successful completion of adequately powered phase III studies in palliative care. Audits of the frequency and distribution of the symptoms of interest can better inform research planning by determining realistic recruitment goals for each site. The proposed studies are to improve the evidence-base for registration and subsidy applications for frequently encountered symptoms where current pharmacological interventions are being used 'off-licence'.Methods: Six services participated in a standardized, retrospective, consecutive cohort audit of five symptoms of their inpatient populations to inform the design of double blind randomised controlled phase III studies to which each site would recruit simultaneously. The audit covered all deaths in a three month period for people who were referred to a specialist palliative care service who had at least one inpatient admission between referral and death regardless of when the person was referred to the service. The audits were based around inclusion and exclusion criteria for the proposed studies.Main Results: Of the 468 people whose medical records were reviewed, potential study participant rates varied by symptom having accounted for general and specific inclusion and exclusion criteria: pain 17.7%; delirium 5.8%; anorexia 5.1%; bowel obstruction 2.8% and cholestatic itch 0%. For those people with a symptom of interest, it was noted at the beginning of the inpatient admission more than half the time. Of all inpatients, fewer then one third would be eligible to participate in at least one study. Conclusions:These data provide a baseline estimate of potential people to approach about clinical trials in supportive care but do not account for clinician 'gate-keeping', lack of interest in participating nor withdrawal from the study once initiated. The data are retrospective and therefore limited by clinical documentation. The audit directly informed an increase in the number of participating sites. Page 2 of 11Archived at Flinders University: dspace.flinders.edu.au INTRODUCTIONLarge scale trials in supportive, palliative and hospice care are feasible, especially if protocols can be designed appropriately for use in several sites simultaneously [6]. One reason for the failure of many studies in palliative care is an over-estimation of likely recruitment even for frequently encountered symptoms. A more comprehensive understanding of patterns of symptom occurrence for each participating site (given local variations in referral patterns) and general factors that may affect potential phase III study participation in a supportive and palliative care population need to be included in feasibility assessment. The design needs to take careful account of such findings if studies are going to be successful, and key performance indicators for each site can be tailored to local symptom patterns to monitor trial progress.

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“…Likewise, dying patients and their families are often deemed too sick and/or vulnerable to participate in research (de Raeve, 1994). Nonetheless, there is evidence that even when dying, many patients not only wish to participate in research, but a research priority for them is helping clinicians to understand what they are saying and feeling (Perkins, Booth, Vowler, & Barclay, 2008). Reciprocation is important to people and there is a need for them to participate in the same human interactions that are important throughout all of life (Burr 1996;Kavanaugh, Moro, Savage, & Mehendale, 2006;Steinhauser et al, 2001).…”

Section: Introductionmentioning

confidence: 99%

Researching Reflexively With Patients and Families

Collier

Wyer

2015

Qual Health Res

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Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods.

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What are patients' priorities for palliative care research? — a questionnaire study

Cited by 22 publications

References 17 publications

An examination of the research priorities for a hospice service in New Zealand: A Delphi study

An examination of the research priorities for a hospice service in New Zealand: A Delphi study

Planning phase III multi-site clinical trials in palliative care: the role of consecutive cohort audits to identify potential participant populations

Researching Reflexively With Patients and Families

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