Information and communication in the context of a clinical trial

Hietanen, Päivi; Aro, Arja R.; Holli, Kaija; Absetz, Pilvikki

doi:10.1016/s0959-8049(00)00191-x

Cited by 73 publications

(78 citation statements)

References 28 publications

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“…Our questionnaire revealed that the correct response rate to the knowledge questions was only slightly better than pure change (56.1%), which is extremely similar to the findings of the cancer patients' study that we adapted the questionnaire from (1). Significant correlation of higher proportion of correct answers with higher level of education and previous participation in clinical research was evident in our study but inconsistently found in other cancer studies (3,4). The need for more clinician time was perceived as one of the incentives to enrol in clinical research, showing that research could improve our patients' experience of care.…”

Section: Discussioncontrasting

confidence: 63%

Clinical Trials Perception in Rheumatology Patients: Experience from a Single Rheumatology Tertiary Center

Ciurtin

Leandro²,

Fitz-Clarence³

et al. 2015

J Rheumatol

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Background: During the last decade there was a huge progress in the available therapies for chronic rheumatic conditions. The discovery, testing and implementing of the new therapies was enabled by numerous clinical trials which exposed the rheumatology patients more than ever to the challenges of clinical research. There is no evidence of previous reports which investigated the perception of rheumatology patients in relation to their willingness to participate in clinical trials. However, in certain disciplines with longer history of clinical research, such as oncology, the literature data offer suitable examples of questionnaire-based research addressing both the clinicians and patients' perceptions. We felt that there was a need to investigate the patients' self-reported views related to rheumatology clinical research in order to address unexplored areas that would hopefully facilitate in the future their involvement in research. There is a very well justified trend to involve patients in the design of clinical trials and research activities in general and also to empower them in controlling their medical condition by providing appropriate access to scientific information. The patientcentred educational programs available nowadays in many hospitals have proven the benefits of putting the patient in the driven seat of their disease control. This is possible by ensuring patients' access to suitable education about the management of rheumatologic diseases and also by enabling their access to the interdisciplinary teams that manage their condition.

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Section: Discussioncontrasting

confidence: 63%

Clinical Trials Perception in Rheumatology Patients: Experience from a Single Rheumatology Tertiary Center

Ciurtin

Leandro²,

Fitz-Clarence³

et al. 2015

J Rheumatol

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“…Unsurprisingly, patients with previous clinical trial experience fared better, as did patients with a higher level of education and those who were younger. Other authors have found younger age and higher education to be associated with improved trial-related knowledge 25 , but some studies have found no such relationship 7,22 . In general, patients were also good judges of their own knowledge level, with those who agreed that they understood clinical trials achieving higher scores.…”

Section: Discussionmentioning

confidence: 96%

A Comparison of Patient Knowledge of Clinical Trials and Trialist Priorities

Cameron

Pond

et al. 2013

Current Oncology

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“…A cumulative logistic regression was performed on each of the three data sets (United States Adults, Mali Adults, and Mali Parent/ Guardians) with overall score as the dependent variable. Independent variables included age group (18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35), and over 35 years of age), sex, and literacy. The effects from the cumulative logistic regression were expressed as odds ratios (ORs).…”

Section: Discussionmentioning

confidence: 99%

“…In previous studies in both developed and developing countries it is frequently the case that 50% or fewer participants understand that they will be randomized. 13,25,26 In the Mali child study, scores for parents/guardians were higher for those who were literate; however, no data were available for age and sex so whether this is a true effect of literacy or rather because of age or sex, which are confounded with literacy in Mali (younger males being more likely to be literate), is not known. Notably, though illiteracy is associated with lower understanding, the high scores for Malian participants, who were mostly illiterate, suggest that illiteracy need not be a barrier to valid consent.…”

Section: Discussionmentioning

confidence: 99%

Comparing the Understanding of Subjects Receiving a Candidate Malaria Vaccine in the United States and Mali

Ellis

Sagara

Durbin

et al. 2010

The American Society of Tropical Medicine and Hygiene

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Initial responses to questionnaires used to assess participants' understanding of informed consent for malaria vaccine trials conducted in the United States and Mali were tallied. Total scores were analyzed by age, sex, literacy (if known), and location. Ninety-two percent (92%) of answers by United States participants and 85% of answers by Malian participants were correct. Questions more likely to be answered incorrectly in Mali related to risk, and to the type of vaccine. For adult participants, independent predictors of higher scores were younger age and female sex in the United States, and male sex in Mali. Scores in the United States were higher than in Mali ( P = 0.005). Despite this difference participants at both sites were well informed overall. Although interpretation must be qualified because questionnaires were not intended as research tools and were not standardized among sites, these results do not support concerns about systematic low understanding among research participants in developing versus developed countries

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Information and communication in the context of a clinical trial

Cited by 73 publications

References 28 publications

Clinical Trials Perception in Rheumatology Patients: Experience from a Single Rheumatology Tertiary Center

Clinical Trials Perception in Rheumatology Patients: Experience from a Single Rheumatology Tertiary Center

A Comparison of Patient Knowledge of Clinical Trials and Trialist Priorities

Comparing the Understanding of Subjects Receiving a Candidate Malaria Vaccine in the United States and Mali

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