What do palliative care patients and their relatives think about research in palliative care?—a systematic review

White, Clare; Hardy, Janet

doi:10.1007/s00520-009-0724-1

Cited by 88 publications

(98 citation statements)

References 17 publications

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“…Despite significant physical barriers, there was great support amongst patients as well as relatives, who often stated that they experienced the problem as meaningful and current, in full compliance with previous studies within palliation[49,50]. …”

Section: Discussionmentioning

confidence: 80%

Is the high intensity symptoms experienced by patients admitted with chronic obstructive pulmonary disease documented by health professionals? - a prospective survey with comparison of patient reported outcomes and medical records

Bech

Bové

Marsaa

et al. 2018

European Clinical Respiratory Journal

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Context: Patients with chronic obstructive pulmonary disease (COPD) have a high symptom burden and reduced quality of life. There is an increasing attention on palliation for patients with COPD. Recognition of symptoms is a prerequisite for palliation. Objectives: We aim to investigate the extent to which symptoms in patients with COPD are recognized in the documentation of the health professionals, indicated in ‘Doctors Symptom Recognition Rate’ (DSR), ‘Nurses Symptom Recognition Rate’ (NSR) or ‘Doctors and/or Nurses Symptom Recognition rates ’(DNSR) as a team, respectively. Methods: Patients with COPD (n = 40) admitted in two respiratory units, responded within 48 h on two symptom-screening-tools that access quality of life; COPD assessment test (CAT) used for the treatment of COPD and EORTC-QLQ-C15-PAL used for palliation in patients with cancer. Patient-described symptomatology was compared to the symptoms as recognized in the documentation of doctors and/or nurses. Results: There was a significant discrepancy between the symptomatology indicated by patients with COPD on CAT and EORTC-QLQ-C15-PAL, and the degree by which it was recognized in the medical records indicated in DSR or NSR. In 30 out of 44 items DSR or NSR were < 70%. There was a significant difference between DNSR versus DSR or NSR, respectively, in 19 out of 22 items. Conclusion: A team-based symptom recognition DNSR is superior when compared to DSR or NSR.Team-based systematic screening is suggested as a pathway to increase symptom recognition in patients with COPD. Increased rates of symptom recognition may improve symptom alleviation and thus palliation.

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Section: Discussionmentioning

confidence: 80%

Is the high intensity symptoms experienced by patients admitted with chronic obstructive pulmonary disease documented by health professionals? - a prospective survey with comparison of patient reported outcomes and medical records

Bech

Bové

Marsaa

et al. 2018

European Clinical Respiratory Journal

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“…12 There can also be an inability to provide informed consent. 12,14-17 Gatekeeping can occur when well-intentioned clinicians 12,14,17,[18][19][20] or family members 15 seek to protect patients from research participation at the end of life, despite research suggesting that some even very ill patients [21][22] and bereaved relatives 23 find it helpful and would like the opportunity to participate. This gatekeeping can impact on the efficiency of research, as well as its validity and reliability due to potentially biased samples.…”

Section: Resultsmentioning

confidence: 99%

Mixed Methods Research in the Development and Evaluation of Complex Interventions in Palliative and End-of-Life Care: Report on the MORECare Consensus Exercise

Farquhar

Preston

Evans

et al. 2013

Journal of Palliative Medicine

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Background: Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods. Objective: The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care. Methods: A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise. Results: There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed. Conclusions: There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications.

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“…21 Advanced consent can facilitate research in palliative care without the reliance on surrogate or proxy decision making at the time an emotionally distressing event has occurred and has been used in studies of critical care management after planned surgery whereby patients are consented prior to induction of anaesthesia. 2 Advanced consent for autopsy has also been used, especially to advance research into dementia, which aids relatives in knowing the prior wishes of the deceased. 3,24 After advanced consent has been obtained, asking the patient/participant to nominate a person to act as his or her proxy during the study period further enhances processes to safeguard the best interests of the participant.…”

Section: Participant's Informed Consent In Advance Of Having the Indementioning

confidence: 99%

“…People in palliative care and hospice (inpatient, ambulatory, and community) services are keen to participate in clinical research at rates far higher than other clinical disciplines 1 as part of a legacy, to help to make sense of their current condition, and to improve care for people in the future. 2 Palliative care researchers must be especially vigilant not to exploit such good will. 1 Ethical and legal frameworks must be incorporated into trial design and conduct.…”

Section: Introductionmentioning

confidence: 99%

Informed Consent in Palliative Care Clinical Trials: Challenging but Possible

Agar

Sheehan

et al. 2013

Journal of Palliative Medicine

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Obtaining informed consent is a key protection that should be afforded universally to people using health services and the basis around which any participation in clinical trials is built. Randomized controlled effectiveness studies are necessary to answer key questions in hospice and palliative care, in order to help systematically improve the quality of care. In order to be properly generalizable, such trials need to have broad inclusion criteria to reflect the population most likely to be affected by the condition. The inclusion of patients who are seriously ill, and therefore potentially vulnerable, requires careful exploration of ethical and legal principles that underpin informed consent. Specific challenges in obtaining informed consent for randomised clinical trials (RCTs) in clinically unstable populations such as hospice and palliative care include higher rates of people with impaired cognitive capacity as well as interventional studies in clinical situations which may present as a sudden change in condition. None of these challenges is unique to hospice and palliative care research, but the combination and frequency with which they are encountered require systematic and considered solutions. This article outlines five different ethically valid consent approaches and discusses their applicability to hospice and palliative care research trials. These include: consent by the patient (at the time of enrolment, in advance of the study, or delayed until after the study has commenced); a proxy (or legally authorised representative); or a consent waiver. Increased use of the less traditional modes of informed consent may lead to greater participation rates in hospice and palliative care trials, thereby improving the evidence base more rapidly in part by better reflecting the population served and hence improving generalizability.

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What do palliative care patients and their relatives think about research in palliative care?—a systematic review

Abstract: Research to date in the palliative care setting has suggested that patients are interested in participating in research and may actually benefit from doing so.

Cited by 88 publications

References 17 publications

Is the high intensity symptoms experienced by patients admitted with chronic obstructive pulmonary disease documented by health professionals? - a prospective survey with comparison of patient reported outcomes and medical records

Is the high intensity symptoms experienced by patients admitted with chronic obstructive pulmonary disease documented by health professionals? - a prospective survey with comparison of patient reported outcomes and medical records

Mixed Methods Research in the Development and Evaluation of Complex Interventions in Palliative and End-of-Life Care: Report on the MORECare Consensus Exercise

Informed Consent in Palliative Care Clinical Trials: Challenging but Possible

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