Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials

Godskesen, Tove; Hansson, Mats; Nygren, Peter; Nordin, Karin; Kihlbom, Ulrik

doi:10.1111/ecc.12184

Cited by 57 publications

(64 citation statements)

References 21 publications

(38 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…One study 486 found that, even when participants recalled the involvement of chance, most also held other coexisting (and sometimes contradictory) views about how and why they had been allocated to the treatment or intervention and believed that they would receive the best treatment for them. Similarly, a number of studies have identified that personal benefits, hope, access to the most effective treatment, 492 and the enthusiasm and hopes of family and friends were often the driving force behind and key motivations for participation. 490 Such beliefs highlight the vulnerability of some groups and the risks that they are willing to take if there is a chance of survival, 493 and this may be an important factor for trials involving potentially disease course-modifying treatments.…”

Section: Patient and Public Involvementmentioning

confidence: 99%

Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations

Webster

Groskreutz

Grinbergs-Saull

et al. 2017

Health Technol Assess

View full text Add to dashboard Cite

Background: There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. Objectives: To agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI). Data sources: We included disease modification trials with quantitative outcomes of efficacy from (1) references from related systematic reviews in workstream 1; (2) searches of the Cochrane Dementia and Cognitive Improvement Group study register, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, EMBASE, Latin American and Caribbean Health Sciences Literature and PsycINFO on 11 December 2015, and clinical trial registries [International Standard Randomised Controlled Trial Number (ISRCTN) and clinicaltrials.gov] on 22 and 29 January 2016; and (3) hand-searches of reference lists of relevant systematic reviews from database searches. Review methods: The project consisted of four workstreams. (1) We obtained related core outcome sets and work from co-applicants. (2) We systematically reviewed published and ongoing disease modification trials to identify the outcomes used in different domains. We extracted outcomes used in each trial, recording how many used each outcome and with how many participants. We divided outcomes into the domains measured and searched for validation data. (3) We consulted with PPI participants about recommended outcomes. (4) We presented all the synthesised information at a conference attended by the wider body of National Institute for Health Research (NIHR) dementia researchers to reach consensus on a core set of outcomes. Results: We included 149 papers from the 22,918 papers screened, referring to 125 individual trials. Eighty-one outcomes were used across trials, including 72 scales [31 cognitive, 12 activities of daily living (ADLs), 10 global, 16 neuropsychiatric and three quality of life] and nine biological techniques. We consulted with 18 people for PPI. The conference decided that only cognition and biological markers are core measures of disease modification. Cognition should be measured by the Mini Mental State Examination (MMSE) or the Alzheimer’s Disease Assessment Scale – Cognitive subscale (ADAS-Cog), and brain changes through structural magnetic resonance imaging (MRI) in a subset of participants. All other domains are important but not core. We recommend using the Neuropsychiatric Inventory for neuropsychiatric symptoms: the Disability Assessment for Dementia for ADLs, the Dementia Quality of Life Measure for quality of life and the Clinical Dementia Rating scale to measure dementia globally. Limitations: Most of the trials inclu...

show abstract

Section: Patient and Public Involvementmentioning

confidence: 99%

Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations

Webster

Groskreutz

Grinbergs-Saull

et al. 2017

Health Technol Assess

View full text Add to dashboard Cite

show abstract

“…At the same time, nonintentional harm may also affect individual people. For example, Godskesen et al (2015) report the motivating factors in which cancer patients volunteer for clinical trials include hope for health benefits in establishing better treatments and the willingness to help. Other survivors share their stories or engage in helping professions, such as the health services, following cancer survival in the UK (Cancer Recovery Foundation, 2007).…”

Section: Roots Of Altruismmentioning

confidence: 99%

“…For example, in qualitative research HIV-positive individuals, they "repeatedly voiced their desire to help others" (Reeves et al, 1999, p. 353). Those living with cancer also expressed altruistic motives for participating in clinical trials by helping to develop improved treatments for future patients (Godskesen et al, 2015;Truong et al, 2011). These findings suggest that personal ALTRUISM BORN OF SUFFERING IN NI 8 suffering may enhance helping acts.…”

mentioning

confidence: 95%

Altruism born of suffering among emerging adults in Northern Ireland

Taylor

Hanna

2017

JACPR

View full text Add to dashboard Cite

Purpose: The paper explores altruism born of suffering (ABS), a theory that explains how the experience of suffering within one's own life may result in the motivation to help others, even outgroup members. Design: Participants were 186 emerging adults (63% female, 37% male; 69% Protestant, 41% Catholic; Average age = 21.3, Standard Deviation = 2.57, years old) in Northern Ireland, a setting of protracted intergroup conflict. Participants were randomly assigned to an in/outgroup condition, read four types of adversity that occurred to same-sex victim(s), and indicated their empathetic response and how much they would like to help the victims. Findings:Moderated mediation analyses revealed that empathy for the victim partially mediated the impact of perceived harm on desire to help; moreover, recent negative life events strengthened the link between harm and empathy. The path between empathy and helping was stronger in the outgroup compared to the ingroup condition. Practical implications: These findings support ABS, highlighting empathy as a key factor underlying more constructive intergroup relations in a divided society. Originality: This paper extends previous research on ABS by focusing on a post-accord context. The value of the current analyses demonstrate the important role of fostering empathy to promote outgroup helping in settings of divisive group identities.Keywords: intergroup conflict, helping behaviours, altruism, empathy, Northern Ireland, prosocial behaviour ALTRUISM BORN OF SUFFERING IN NI 4 Altruism born of suffering among emerging adults in Northern IrelandConflict between groups plagues dozens of countries around the world, while natural disasters such as earthquakes, flood and drought fill headlines. Facing these multiple forms of adversity, humans have a number of ways to respond. Altruism born of suffering (ABS;Staub, 2003;Staub and Vollhardt, 2008;Vollhardt, 2009), a theory developed to understand helping behaviours during the Holocaust, may shed light on the processes and conditions under which individuals respond to adversity by assisting others. Moreover, in divided societies, ABS may suggest pathways to promote intergroup helping behaviours (Taylor et al., 2014). Understanding how past experiences shape individual responses to the suffering of others, such as empathy, is particularly important among young people. Past research has found that patterns of altruism and other prosocial orientations established in emerging adulthood often last across the life course (Bowman et al., 2010). Toward this end, this is the first study to explore the role of ABS and its implications for improving intergroup relations among emerging adults in Northern Ireland (NI). Northern Ireland: Conflict and ContextNI is a setting of protracted history of ethno-national struggle between those who wish to remain part of the United Kingdom and those who wish for a united Ireland (Darby, 1983). The most recent outbreak of sustained violence in NI was the 'The Troubles ' (1968-1998), in which over 3,600 de...

show abstract

“…While altruism can be a significant motivator for participation, the notion that it is the only legitimate reason for participation in research is neither realistic nor desirable. Studies have demonstrated that altruism is not always the main factor driving participation in medical research and that subjects frequently have more than one reason for participation (McCann et al, 2010;Hunter et al, 2012;Godskesen et al, 2014). Relying only on altruism may be especially problematic for communities with a history of experiencing research abuses who may demand more tangible benefits from participation in genetic studies (Corbie-Smith et al, 1999).…”

Section: Discussionmentioning

confidence: 99%

Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks

Siminoff

Wilson‐Genderson

Mosavel

et al. 2017

Genetic Testing and Molecular Biomarkers

View full text Add to dashboard Cite

Aims: Confidentiality of personal identifiers potentially linking the genetic results from biobanking participants back to the donor and donor relatives is a concern. The risks associated with a breach of confidentiality should be ascertained when biobanks collect samples requiring the consent of a family decision maker (FDM) from deceased organ and tissue donors. This article explores FDM knowledge and opinions regarding risks associated with participation in biobanking research in the context of the Genotype-Tissue Expression (GTEx) Project. Methods: Data collection included a survey completed by organ procurement organization requesters (n = 37) and semistructured telephone interviews with the FDMs (n = 85). Results: Donor families were more likely to know that there was a risk that a patient's identity could be revealed through a breach of confidentiality ( p < 0.05). They also were more likely to understand that researchers using biobanked tissue would not have access to the patient's exact identity ( p < 0.05). FDMs who refused donation were more concerned about risks than donors and reported lower levels of support for medical research in general. Finally, families were frequently interested in the return of results and willing to trade absolute confidentiality for participation. Conclusions: Clear discussion of the risk of breach of confidentiality is needed during the consent process. The risk and benefit equation could be equalized if studies such as GTEx offered genomic results to interested participants.

show abstract

Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials

Cited by 57 publications

References 21 publications

Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations

Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations

Altruism born of suffering among emerging adults in Northern Ireland

Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks

Contact Info

Product

Resources

About