A pragmatic 2×2×2 factorial cluster randomized controlled trial of educational outreach visiting and case conferencing in palliative care—methodology of the Palliative Care Trial [ISRCTN 81117481]

Abernethy, Amy P.; Currow, David C.; Hunt, Roger; Williams, Helena; Roder‐Allen, Gerda; Rowett, Debra; Shelby‐James, Tania; Esterman, Adrian; May, Frank; Phillips, Paddy A.

doi:10.1016/j.cct.2005.09.006

Cited by 54 publications

(53 citation statements)

References 79 publications

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“…Palliative care clinicians are increasingly using change in performance status as a flag for likelihood of need for services, timing of interventions, and as an outcome measurement for clinical programs and research [1-3]. The Karnofsky Performance Scale (KPS) has been used as an assessment tool for performance status in oncology since 1948 [4].…”

Section: Introductionmentioning

confidence: 99%

The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]

et al. 2005

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Section: Introductionmentioning

confidence: 99%

The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]

et al. 2005

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“…Recruitment protocols for palliative care research, for example, have enabled enrollment and retention of sizeable study samples; an international team developed a recruitment protocol comprised of multiple components such as scripting and role plays, key messages, and methods to minimize participant burden, and used this protocol to enroll a sample of 461 patients in 26 months (21). The concept of a palliative care research cooperative group is currently being cultivated by several nationally prominent senior investigators in the field; this structure promises a forum in which to pool best practices and methods for overcoming research barriers; in a cooperative group, the expanded population of potentially eligible patients for any given study makes recruitment of sufficient sample sizes, a primary challenge in palliative care studies, more feasible.…”

Section: Objection 4: Research In the Palliative Care Setting Is Too mentioning

confidence: 99%

Research in End-of-Life Settings: An Ethical Inquiry

LeBlanc

Wheeler

Abernethy³

2010

Journal of Pain & Palliative Care Pharmacotherapy

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A fundamental tension surrounds the ethics of conducting research in vulnerable populations, and specifically, research involving patients at or near the end-of-life. In Palliative Medicine, these patients' care has historically been based on compassion, clinical judgment and experience, and anecdote rather than on data generated through high-quality clinical trials. A robust evidence base to support clinical practice in the end-of-life setting is lacking. Multiple ethical objections to the conduct of research at the end of life have impeded efforts to build such an evidence base. Arguments can be categorized into claims that the goals of research conflict with the goals of care; research unduly burdens vulnerable patients and families/caregivers; genuine equipoise does not exist; and research in the palliative care setting is too difficult. The authors explore and respond to these objections, noting the vital importance of research at this stage of the illness trajectory. The authors conclude that barriers to palliative care research are surmountable, and, indeed, that the "research imperative" and principles laid out in the Belmont Report of 1979 require us to rigorously study clinical interventions used for palliative care patients-so as to provide optimal safety and outcomes for present and future patients.

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“…20 the Hospital2Home service is based on an australian model of patient-led case conferencing. 21,22 Patients who are no longer eligible for any further active anticancer treatment are referred to the service. First, the Hospital2Home specialist sister meets with the patient and their family to discuss any issues and preferences the patient may have.…”

Section: Information For Patients and Carersmentioning

confidence: 99%

End-of-life care: preparing patients and families

Wood

Smith

2010

Nat Rev Urol

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The priority for care at the end of life is to ensure that all patients experience high-quality care, irrespective of their diagnosis or preferred place of care. This phase of an individual's disease journey is fraught with complex decision-making that can obscure and impair the provision of high-quality care in the absence of advance care planning. In the past few years, the Department of Health in the UK has emphasized this through a number of initiatives and strategies aimed at preparing patients, carers, and indeed professionals, for the terminal phase of disease. This Review explores these initiatives and demonstrates, through the discussion of a recent case history of an individual with a diagnosis of a urological malignancy, how they have been implemented at a local level by The Royal Marsden NHS Foundation Trust.

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A pragmatic 2×2×2 factorial cluster randomized controlled trial of educational outreach visiting and case conferencing in palliative care—methodology of the Palliative Care Trial [ISRCTN 81117481]

Cited by 54 publications

References 79 publications

The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]

The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]

Research in End-of-Life Settings: An Ethical Inquiry

End-of-life care: preparing patients and families

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