Preferences of Older Adults with Cancer for Involvement in Decision‐Making about Research Participation

Mancini, Julien; Jansen, Jesse; Julian‐Reynier, Claire; Bechlian, Didier; Vey, Norbert; Chabannon, Christian

doi:10.1111/jgs.12820

Cited by 4 publications

(2 citation statements)

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“…or the differences between the level of offer and demand. However, previous results have shown that older patients, for example, are interested in participating in research [49]. Moreover, HL was measured using a single item screening tool evaluating only functional HL [24], and we cannot exclude the possibility of a relationship whereby those invited to participate received complex consent documents and were therefore more likely to declare difficulties understanding hospital materials.…”

Section: Discussionmentioning

confidence: 97%

Health Literacy and Clinical Trial Participation in French Cancer Patients: A National Survey

2022

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Few studies have explored the relationship between health literacy (HL) and trial participation. In this context, we aimed to study this relationship in French cancer patients. We used data from the French national VIe après le CANcer (VICAN) survey. Two questionnaire items focused on previous invitations to participate in clinical trials and subsequent enrollment. The Single Item Literacy Screener was used to measure functional HL. In total, 1954 cancer patients responded to both VICAN surveys (two and five years after diagnosis). Mean age was 54.1 ± 12.7 years at diagnosis, and 37.6% were classified as having limited HL. One in ten (10.3%) respondents reported having been previously invited to participate in a clinical trial. Of these, 75.5% had enrolled. Limited HL was associated with fewer trial invitations but not with enrollment once invited. Multivariate analysis confirmed the negative effect of limited HL on clinical trial invitation (adjOR = 0.55 (0.39 to 0.77), p < 0.001) after adjustment for multiple characteristics. Patients with limited HL received fewer invitations to participate in trials but were likely to enroll when asked. Addressing HL is necessary to create a more inclusive health system and to reduce inequalities not only in access to innovative cancer care, but to health inequalities in general.

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Section: Discussionmentioning

confidence: 97%

Health Literacy and Clinical Trial Participation in French Cancer Patients: A National Survey

2022

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“…Understanding the factors that modulate participation in research is important [10], especially for studies that focus on older adults [11]. The differences between older adults who participate and do not in research have been explored using both quantitative [12][13][14], and qualitative approaches [10,[15][16][17][18]. The latter proved to be particularly suitable in uncovering both the drivers to and the experience of participation [10].…”

Section: Introductionmentioning

confidence: 99%

Older adults’ motivations to participate or not in epidemiological research. Qualitative inquiry on a study into dementia in Switzerland

et al. 2021

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Introduction High participation in epidemiological studies is crucial for both external and internal validity. Because response rates have declined in recent years, there is an increasing need to understand the drivers and the barriers to research participation. This study aims to uncover the motivations in favour and against participation of older adults to an epidemiological study on health and dementia. Methods Twenty-two older adults, who already took part to the preliminary phase of an epidemiological study in Switzerland, agreed to participate to semi-structured, face-to- face interviews. An experienced researcher carried out all interviews in a quiet place of choice of the interviewee either at their domicile or the university, between November 2019 and January 2020. The interviews were audio and video taped, transcribed verbatim, and thematically analysed by two independent researchers. Results We identified three main themes for the motivations in favour of participation (i.e. personal, related to the outcomes of research, and altruistic motivations), and we highlighted subthemes for each theme (e.g. personal motivations: curiosity; civic engagement; interest in the topic; trust in science; everyone counts; openness; play the game). Motivations against participation reflected the first two themes, while there was no counterpart for altruistic motivations. Conclusions Our thematic analysis revealed that older adults hold specular motivations in favour and against participation to research. Studying jointly motivations in favour and against provides information for recruitment strategies and to overcome barriers to participation, respectively. Participatory action research can inform the design and conduction of and should precede epidemiological studies in older adults, and can potentially contribute to attain high response rates.

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L’autonomie de décision des patients atteints de cancer : pourquoi et comment la promouvoir ?

Mancini

2018

Bulletin du Cancer

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Preferences of Older Adults with Cancer for Involvement in Decision‐Making about Research Participation

Cited by 4 publications

References 10 publications

Health Literacy and Clinical Trial Participation in French Cancer Patients: A National Survey

Health Literacy and Clinical Trial Participation in French Cancer Patients: A National Survey

Older adults’ motivations to participate or not in epidemiological research. Qualitative inquiry on a study into dementia in Switzerland

L’autonomie de décision des patients atteints de cancer : pourquoi et comment la promouvoir ?

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