Comparable indicators of therapeutic misconception between epilepsy or Parkinson’s disease patients between those with clinical trial experience and trial non-participants

Reijula, Emmi; Halkoaho, Arja; Pietilä, Anna‐Maija; Selander, Tuomas; Martikainen, Kirsti; Kälviäinen, Reetta; Keränen, Tapani

doi:10.1016/j.seizure.2018.06.006

Cited by 6 publications

(4 citation statements)

References 33 publications

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“…The scale has good internal consistency (Cronbach's alpha scores of 0.75-0.83) [15]. Adaptations of this scale have been used to assess therapeutic misunderstanding in PD and epilepsy [18,26,27]. High scores (e.g., agreement) on each subscale indicated that an individual may be at-risk for therapeutic misconception, misestimation, or optimism, respectively [15].…”

Section: Therapeutic Misunderstanding Scalementioning

confidence: 99%

“…Safety, Information Needs, Negative Expectations, and Patient Involvement (Cronbach's alpha scores of 0.64-0.73). This scale was developed with patients diagnosed with cancer or asthma, and adaptations of this scale have been used to assess trial attitudes in PD and epilepsy[18,[26][27][28]. The scores from the scale were interpreted as follows: high Positive Beliefs scores suggested that respondents held positive views about trials; high Safety scores suggested respondents assumed clinical trial safeguards are in place, high Information Needs scores suggested respondents required information regarding trials,…”

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confidence: 99%

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Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington’s Disease Community

Cotter

Siskind

Sha

et al. 2019

JHD

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Background: New therapies that could modify the disease course of Huntington's disease (HD) are entering clinical trials. However, conceptions about clinical research from the HD community are unknown. This knowledge could help inform patient-clinician discussions surrounding clinical trial participation. Objective: The purpose of this study was to assess clinical trial attitudes and understanding in the HD community. Methods: We developed a survey incorporating two measures of trial understanding and attitudes and the impact of therapeutic route of administration on hypothetical trial participation. The survey was distributed via emails, flyers, and social media through HD-related organizations. Results: There were 73 responses. Individuals self-reported as clinically diagnosed with HD, gene positive but asymptomatic, or primary caregivers. Respondents viewed clinical trials positively and generally viewed trials as safe. Individuals with prior HD-related research experience were less likely to have negative expectations about trials than those without research experience (p = 0.002), and women had higher information needs than men (p = 0.001). Individuals with HD were more likely than the other groups to experience therapeutic misconception (p = 0.002). All respondents were able to appraise risks and benefits of research but exhibited optimism about trial outcomes. Willingness to participate was highest when the route of administration was minimally invasive. Conclusions: While the HD community views clinical trials positively, patients with HD are at high risk for therapeutic misconception and all groups are optimistic about trial outcomes. Limitations of this study include a small sample that may be inclined to view research positively given past trial participation and interest in participating in HD surveys. However, the findings from this study can be used to strengthen informed consent during HD clinical trial recruitment.

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Section: Therapeutic Misunderstanding Scalementioning

confidence: 99%

mentioning

confidence: 99%

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington’s Disease Community

Cotter

Siskind

Sha

et al. 2019

JHD

View full text Add to dashboard Cite

show abstract

“…One of the primary aspects that characterize apps in this category is providing access to research on the disorder in a manner that is acceptable and understandable to a lay audience [65]. There may be a variety of reasons for providing this information, including increasing understanding of and countering misperceptions about the course of a disease [66-68], increasing beliefs about negative consequences of inaction or dysfunctional action [69,70] and increasing beliefs that taking proper action will be beneficial [70,71].…”

Section: Methodsmentioning

confidence: 99%

Specialized Smartphone Intervention Apps: Review of 2014 to 2018 NIH Funded Grants

Hansen¹,

Scheier

2019

JMIR Mhealth Uhealth

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Background The widespread adoption of smartphones provides researchers with expanded opportunities for developing, testing and implementing interventions. National Institutes of Health (NIH) funds competitive, investigator-initiated grant applications. Funded grants represent the state of the science and therefore are expected to anticipate the progression of research in the near future. Objective The objective of this paper is to provide an analysis of the kinds of smartphone-based intervention apps funded in NIH research grants during the five-year period between 2014 and 2018. Methods We queried NIH Reporter to identify candidate funded grants that addressed mHealth and the use of smartphones. From 1524 potential grants, we identified 397 that met the requisites of including an intervention app. Each grant’s abstract was analyzed to understand the focus of intervention. The year of funding, type of activity (eg, R01, R34, and so on) and funding were noted. Results We identified 13 categories of strategies employed in funded smartphone intervention apps. Most grants included either one (35.0%) or two (39.0%) intervention approaches. These included artificial intelligence (57 apps), bionic adaptation (33 apps), cognitive and behavioral therapies (68 apps), contingency management (24 apps), education and information (85 apps), enhanced motivation (50 apps), facilitating, reminding and referring (60 apps), gaming and gamification (52 apps), mindfulness training (18 apps), monitoring and feedback (192 apps), norm setting (7 apps), skills training (85 apps) and social support and social networking (59 apps). The most frequently observed grant types included Small Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) grants (40.8%) and Research Project Grants (R01s) (26.2%). The number of grants funded increased through the five-year period from 60 in 2014 to 112 in 2018. Conclusions Smartphone intervention apps are increasingly competitive for NIH funding. They reflect a wide diversity of approaches that have significant potential for use in applied settings.

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“…One of the primary aspects that characterize apps in this category is providing access to research on the disorder in a manner that is acceptable and understandable to a lay audience [65]. There may be a variety of reasons for providing this information, including increasing understanding of and countering misperceptions about the course of a disease [66][67][68], increasing beliefs about negative consequences of inaction or dysfunctional action [69,70] and increasing beliefs that taking proper action will be beneficial [70,71].…”

Section: Education and Informationmentioning

confidence: 99%

NIH Grants Proposing Specialized Smartphone Intervention Apps: 2014 to 2018 (Preprint)

Hansen¹,

Scheier²

2019

Preprint

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BACKGROUND The widespread adoption of mobile and smartphones provides researchers with expanded opportunities for implementing behavioral and health-related interventions. The National Institutes of Health (NIH) funds competitive technology-based grant applications to support health promotion consistent with its mission. Funded grants represent the state-of-the-art science and therefore are expected to anticipate the progression of health promotion and disease prevention research in the near future. OBJECTIVE The objective of this paper is to examine the different kinds of smartphone-based intervention apps funded through NIH Institutes during the five-year period between 2014 and 2018. METHODS We queried the public domain NIH Reporter to identify candidate grants that addressed mHealth and involved implementation of smartphone applications. From 1,524 potential grants, we identified 399 that met the requisite of including an intervention app. Grants from 20 Institutes under the NIH umbrella were included. Each grant’s abstract was analyzed to understand the rationale behind the app and focus of intervention, in addition year of funding, and first-year award amount, type of activity (e.g. R01, R34, etc.), specific strategy, intended outcome, and target population were also noted. RESULTS We identified 13 categories of strategies employed in the different intervention apps. Most grants included either one (36.6%) or two (37.8%) intervention approaches. These included cognitive and behavioral therapies (67 apps), enhanced motivation (49 apps), mindfulness training (17 apps), norm setting (7 apps), skills training (84 apps), gaming and gamification (56 apps), social support and social networking (58 apps), facilitating, reminding and referring (60 apps), education and information (84 apps), monitoring and feedback (191 apps), contingency management (23 apps), artificial intelligence (57 apps), and bionic adaptation (33 apps). The most frequently observed grant types included SBIR/STTR grants (40.9%) and R01s (26.1%). The number of grants funded increase through the five-year period from 60 in 2014 to 112 in 2018. CONCLUSIONS Smartphone intervention apps are increasingly competitive for NIH funding. They utilize a wide diversity of intervention strategies and substantive foci that collectively have significant potential for use in applied health promotion settings.

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Comparable indicators of therapeutic misconception between epilepsy or Parkinson’s disease patients between those with clinical trial experience and trial non-participants

Cited by 6 publications

References 33 publications

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington’s Disease Community

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington’s Disease Community

Specialized Smartphone Intervention Apps: Review of 2014 to 2018 NIH Funded Grants

NIH Grants Proposing Specialized Smartphone Intervention Apps: 2014 to 2018 (Preprint)

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