Preliminary development of a questionnaire measuring patient views of participation in clinical trials

Arnetz, Judith E.; Sudan, Sukhesh; Goetz, Courtney; Arnetz, Bengt B.; Gowland, Laura; Manji, Suzanne; Ghosh, Samiran

doi:10.1186/s13104-019-4724-z

Cited by 12 publications

(19 citation statements)

References 20 publications

(36 reference statements)

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“…Following indicating their willingness to donate, participants rated the importance of nine information items when considering stool donation (e.g., understanding how donating stool could help patients), 1 not at all important to 7 very important [ 40 ]. Participants self-reported their general attitudes towards stool donation (no opinion to very positive) and their attitudes towards personally donating (negative, neutral, positive) on 1-item scales [ 41 ].…”

Section: Methodsmentioning

confidence: 99%

Determinants of community members’ willingness to donate stool for faecal microbiota transplantation

Hyde

Masser

2020

PLoS ONE

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Universal stool banks rely on, but face difficulties recruiting, community volunteers to donate stool for faecal microbiota transplantation (FMT) to effectively treat recurrent Clostridioides difficile. This study sought to identify determinants of community members’ willingness to donate stool to guide donor recruitment. 397 Australian residents (52% male, 47% 21–30 years, 63% university educated) completed a survey to gauge willingness to donate stool, bowel habits, information needs, attitudes, barriers, and motives for donation. Most reported regular bowel movements (BMs; 90%), morning BMs (63%), BMs ≤5 minutes duration (67%), and some discomfort doing BMs in public restrooms (69%). Less than half were willing to donate stool in-centre (45% willing) or at home (48%). Important information needs identified by >80% were convenience and travel requirements associated with donation. Main barriers were logistics, capabilities to donate, disgust (e.g., donation process), and discomfort (e.g., privacy). The main motivator was altruism, with compensation secondary. Linear regression models identified less discomfort doing BMs in public restrooms (β = -0.15), understanding benefits to patients (β = 0.15), placing less importance on understanding the donation process (β = -0.13), and positive attitudes (β = 0.56) as determinants of willingness to donate in-centre. Understanding benefits to self (β = 0.11) and patients (β = 0.24), placing less importance on understanding the donation purpose (β = -0.19), and positive attitudes (β = 0.50) determined willingness to donate at home. Stool banks should consider donor’s bowel habits, comfort donating in-centre, and information needs early in recruitment; and implement flexible logistics for potential donors who face time constraints and limited access to stool banks.

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Section: Methodsmentioning

confidence: 99%

Determinants of community members’ willingness to donate stool for faecal microbiota transplantation

Hyde

Masser

2020

PLoS ONE

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“…Finally, as is the case in most questionnaires, measuring patient views of participation in medical research, psychometrics, namely, principal component analysis and reliability, were not done in this study. 28 In the future more comprehensive studies are needed to cover these limitations.…”

Section: 4%mentioning

confidence: 99%

<p>Perceptions Towards Medical Research Participation in Jordan: A Study from Jordan</p>

Farha¹,

Alzoubi²,

Khabour³

et al. 2020

JMDH

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Progress and development in medical researches require the participation of volunteers in such research, but unfortunately, the participation rate is low. This study aimed to assess Jordanian public perceptions towards participation in medical research and to understand motivators and barriers that may affect their participation. Patients and Methods: This is a cross-sectional study that was conducted from December 2019 to February 2020. Adults from the public were invited to participate in this paper-based survey. The survey assessed public perception (values, trust and ethics), motivators, and barriers towards participation in medical research. Results: During the study period, 2000 subjects were recruited. Around 82.3% (n = 1643) strongly agreed/agreed that medical research is important for the advancement of science. Helping the society was found to be the main motivators to participate in medical research (n = 1708, 85.4%), while time constrains (n = 1400, 70.0%), lack of opportunity (n = 1278, 63.9%), and the lack of knowledge and awareness about these researches (n = 1152, 57.6%) were among the top barriers towards the participation in medical research. Finally, results showed that previous participation in medical research was correlated with lower overall perception of values and ethics of research, and higher trust in research (p-value <0.001). Conclusion: Jordanians have positive perception toward participation in medical research, which could be improved by increasing awareness, trust, and training of researchers on responsible conduct of research(RCR) in the country.

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“…The questionnaire To further expand the usage of the pilot questionnaire developed by Arnetz et al (2019) for measuring patient perceptions and expectations of participating in clinical trials, we attempted to translate, adapt, and validate that questionnaire in the Greek context, after having conducted a literature review on earlier research on patient perceptions of involvement in medical care, in general and especially in Greece.…”

Section: Methodsmentioning

confidence: 99%

“…In the study of Arnetz et al (2019), the pilot questionnaire consisted of 30 items and it was delivered to 53 patients. The authors derived a six-factor solution that encompassed factors concerning motivation, risks of participation, bene ts of participation, understanding the purpose, cost/convenience, and contribution to health improvement.…”

Section: Factor Exploratory Analysis and Statistical Signi Cancementioning

confidence: 99%

Translation and Validation of the Greek Version of a Questionnaire Measuring Patient Views on Participation in Clinical Trials

Karampatakis

Kakavouti-Doudos

Oikonomidis

et al. 2021

Preprint

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BackgroundThe increasing number of clinical research opportunities requires increasing numbers of participants in clinical trials. However, it may become increasingly problematic, as protocols have become increasingly complex. Better understanding of patients’ attitudes towards their potential participation in clinical trials is essential for developing effective clinical trial recruitment strategies. In Greece, limited research has been conducted on this topic so far. This study aims to contribute to filling this gap. MethodsA cross-sectional study was conducted. Purposive sampling was used to select participants. The Greek version of a recently developed questionnaire measuring patient views on participation in clinical trials, a 27‐item scale distributed into four factors, was tested. In addition, participants were asked to provide information regarding their socio-demographics. A demographic comparison was conducted.ResultsThe four-factor solution derived in our study consisted of the same 27 items and it was different from the six-factor solution that Arnetz et al. proposed. The factors risks and benefits, that consisted of 5 and 3 items respectively in the six-factor solution, were merged into one factor that consisted of 10 items in the four-factor solution. The four factors produced were Risks and benefits (ten items, α= 0,867), Patient’s expectations (six items, α= 0.864), Patient’s participation (five items, α= 0.827), and Cost and convenience (five items, α= 0,770). We found that demographic factors did not impact patients' opinions about clinical trials participation, except for gender. The participants reported as important for participating in clinical trial: receiving clear and adequate information (95,5%) and being given the opportunity to ask questions (97,8%), take part in discussions regarding their own treatment (94,6%), and voice their concerns and opinions (91,1%). As factors strongly associated with participants’ willingness to participate in a clinical trial were reported: concerns about the risks of being in a clinical trial (87,5%), the possible side effects of clinical trials (86,3%), the type of treatment given in a clinical trial (83,7%), and whether participation would improve their quality of life (QoL) (81,5%).ConclusionThe preliminary validation of the Greek version of the questionnaire measuring patient perceptions and expectations of participating in clinical trials demonstrated acceptable validity and reliability and could be further tested in larger samples. The findings that emerged from this study are in line with previous literature.

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Preliminary development of a questionnaire measuring patient views of participation in clinical trials

Cited by 12 publications

References 20 publications

Determinants of community members’ willingness to donate stool for faecal microbiota transplantation

Determinants of community members’ willingness to donate stool for faecal microbiota transplantation

<p>Perceptions Towards Medical Research Participation in Jordan: A Study from Jordan</p>

Translation and Validation of the Greek Version of a Questionnaire Measuring Patient Views on Participation in Clinical Trials

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