A Systematic Review Examining the Literature on Attitudes of Patients with Advanced Cancer Toward Research

Todd, Anne; Laird, Barry; Boyle, Dorothy; Boyd, A.; Colvin, Lesley; Fallon, Marie

doi:10.1016/j.jpainsymman.2008.07.009

Cited by 31 publications

(32 citation statements)

References 20 publications

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“…It is important to include the range of diagnoses that have palliative care needs as different patient groups can have distinct concerns regarding research. The gap in knowledge about cancer patients in the advanced stages of illness seems to be addressed since the review undertaken by [Todd et al 12]. Most of the studies identified in this review targeted the later stages of illness as concerns regarding research were expected to become more pronounced nearer to death.…”

Section: Discussionmentioning

confidence: 99%

“…While it is necessary to consider the concerns of this debate there is little prospect of resolving the existing tensions by argumentation alone. Systematic reviews have appraised the evidence regarding advanced cancer patients’ attitudes towards research [12] and on palliative care patients’ and carers’ views about research in palliative care [13]. This study broadens the scope by undertaking a critical interpretive synthesis (CIS) [14] across this field in order to synthesise existing empirical data on the attitudes and values regarding participation held by all stakeholders involved in palliative care research.…”

Section: Introductionmentioning

confidence: 99%

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Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature

Gysels

Evans

Higginson

2012

BMC Med Res Methodol

100

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BackgroundThe development of the evidence-base informing end of life (EoL) care is hampered by the assumption that patients at the EoL are too vulnerable to participate in research. This study aims to systematically and critically review the evidence regarding the experiences and views of patients, caregivers, professionals and researchers about participation in EoL care research, and to identify best practices in research participation.MethodsWe searched seven electronic databases, and hand searched three journals and the bibliographies of relevant papers. Inclusion criteria were original research papers on involvement in EoL care research or its impact on participants. Critical interpretive synthesis was used to integrate the whole body of empirical evidence on this topic and generate theoretical categories from the evidence.ResultsOf a total of 239 identified studies, 20 studies met the inclusion criteria, from: the US (11), the UK (6) and Australia (3). Most focused on patients with cancer (12) and were conducted in hospices (9) or hospitals (7). Studies enquired about issues related to: EoL care research in general (5), specific research methods (13), and trial research (2). The studies evaluating willingness to participate in EoL care research showed positive outcomes across the different parties involved in research. Factors influencing willingness were mainly physical and cognitive impairment. Participating in research was a positive experience for most patients and carers but a minority experienced distress. This was related to: characteristics of the participants; the type of research; or the way it was conducted. Participatory study designs were found particularly suitable for enabling the inclusion of a wide range of participants.ConclusionThe evidence explored within this study demonstrates that the ethical concerns regarding patient participation in EoL care research are often unjustified. However, research studies in EoL care require careful design and execution that incorporates sensitivity to participants’ needs and concerns to enable their participation. An innovative conceptual model for research participation relevant for potentially vulnerable people was developed.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature

Gysels

Evans

Higginson

2012

BMC Med Res Methodol

100

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“…Altruism is a commonly cited motive for trial participation [26-28], where participants take part in research for the benefit of others regardless of any benefit for themselves. There is a concern that the use of incentives may undermine altruistic reasons for participation.…”

Section: Discussionmentioning

confidence: 99%

Impact and Costs of Incentives to Reduce Attrition in Online Trials: Two Randomized Controlled Trials

Khadjesari¹,

Murray²,

Kalaitzaki³

et al. 2011

J Med Internet Res

105

134

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BackgroundAttrition from follow-up is a major methodological challenge in randomized trials. Incentives are known to improve response rates in cross-sectional postal and online surveys, yet few studies have investigated whether they can reduce attrition from follow-up in online trials, which are particularly vulnerable to low follow-up rates.ObjectivesOur objective was to determine the impact of incentives on follow-up rates in an online trial.MethodsTwo randomized controlled trials were embedded in a large online trial of a Web-based intervention to reduce alcohol consumption (the Down Your Drink randomized controlled trial, DYD-RCT). Participants were those in the DYD pilot trial eligible for 3-month follow-up (study 1) and those eligible for 12-month follow-up in the DYD main trial (study 2). Participants in both studies were randomly allocated to receive an offer of an incentive or to receive no offer of an incentive. In study 1, participants in the incentive arm were randomly offered a £5 Amazon.co.uk gift voucher, a £5 charity donation to Cancer Research UK, or entry in a prize draw for £250. In study 2, participants in the incentive arm were offered a £10 Amazon.co.uk gift voucher. The primary outcome was the proportion of participants who completed follow-up questionnaires in the incentive arm(s) compared with the no incentive arm.ResultsIn study 1 (n = 1226), there was no significant difference in response rates between those participants offered an incentive (175/615, 29%) and those with no offer (162/611, 27%) (difference = 2%, 95% confidence interval [CI] –3% to 7%). There was no significant difference in response rates among the three different incentives offered. In study 2 (n = 2591), response rates were 9% higher in the group offered an incentive (476/1296, 37%) than in the group not offered an incentive (364/1295, 28%) (difference = 9%, 95% CI 5% to 12%, P < .001). The incremental cost per extra successful follow-up in the incentive arm was £110 in study 1 and £52 in study 2.ConclusionWhereas an offer of a £10 Amazon.co.uk gift voucher can increase follow-up rates in online trials, an offer of a lower incentive may not. The marginal costs involved require careful consideration.Trial registrationISRCTN31070347; http://www.controlled-trials.com/ISRCTN31070347 (Archived by WebCite at http://www.webcitation.org/5wgr5pl3s)

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“…‘Gatekeeping’ (ie, preventing access to potential research subjects) by clinical staff has also been cited as a problem in palliative care research studies 34 As a result, and despite there being evidence that palliative care patients and their carers are frequently in favour of participating in research,5 6 many studies fail to obtain their objective due to difficulties with recruiting the required sample size 7…”

Section: Introductionmentioning

confidence: 99%

“…Other reports of researchers’ experience have involved far fewer patients. A systematic review6 identified 11 papers investigating the attitudes of patients with advanced cancer to participation in research studies. The median sample size for these studies was 33 subjects and the largest study included 214 participants.…”

Section: Introductionmentioning

confidence: 99%

Factors affecting recruitment to an observational multicentre palliative care study

Stone

Gwilliam

Keeley

et al. 2013

BMJ Support Palliat Care

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ObjectivesTo identify those factors which adversely affected recruitment to a large multicentre palliative care study.MethodsPatient accrual to a multicentre, observational, palliative care study was monitored at three critical junctures in the research process. (1) Eligibility—did the patient fulfil the study entry criteria? (2) Accessibility—was it possible to access the patient to be able to inform them about the study? (3) Consent—did the patient agree to participate in the study? The reasons why patients were ineligible, inaccessible or refused consent were recorded.Results12 412 consecutive referrals to participating clinical services were screened for study inclusion of whom 5394 (43%) were deemed to be ineligible. Of the remaining patients 4617/7018 (66%) were inaccessible to the research team. The most common reasons being precipitous death, ‘gatekeeping’ by clinical staff or rapid discharge. Of the 2410 patients who were visited by the research team and asked to participate in the study 1378 (57%) declined. Overall 8.2% (1018/12 412) of patients screened participated in the study. There were significant differences in recruitment patterns between hospice inpatient units, hospital support and community palliative care teams.ConclusionsSystematic monitoring and analysis of patient flows through the clinical trial accrual process provided valuable insights about the reasons for failure to recruit patients to a clinical trial and may help to improve recruitment in future studies.

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A Systematic Review Examining the Literature on Attitudes of Patients with Advanced Cancer Toward Research

Cited by 31 publications

References 20 publications

Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature

Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature

Impact and Costs of Incentives to Reduce Attrition in Online Trials: Two Randomized Controlled Trials

Factors affecting recruitment to an observational multicentre palliative care study

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