Decision-making in Stem Cell Trials for Spinal Cord Injury: The Role of Networks and Peers

Eijkholt, Marleen; Mizgalewicz, Ania; Illes, Judy

doi:10.2217/rme.12.32

Cited by 6 publications

(8 citation statements)

References 25 publications

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“…12,[14][15][16] Our results underscored the need to consider a patient's perception of risk as a dynamic rather than static phenomenon when designing clinical trials. Further research has interrogated the views of health-care professionals (HCPs) and injured individuals about the evidence needed to move from bench to bedside considering different risk frameworks.…”

Section: Introductionmentioning

confidence: 70%

“…9,12,[14][15][16] Definitions and meanings of risk vary, however, and understanding these in terms of hazard, exposure, consequence and probability is complex. 6 In this study, we identified three major differences in perspectives about risk between HCPs and ISCIs.…”

Section: Discussionmentioning

confidence: 99%

“…There is evidence that risk perceptions vary between professionals and patients, and may be influenced by both hope 12 and hype in the stem cell context. [13][14][15][16][17] Studies of risk communication generally speak to the need for incorporating and addressing personal values in the informed consent process. 13,18 However, such studies have not focused specifically on ISCIs.…”

Section: Introductionmentioning

confidence: 99%

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Dissociations in the meaning of risk between health-care professionals and individuals with spinal cord injury

Eijkholt

Illes

2013

Spinal Cord

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Objective: Risks have been a central concern in stem cell research overall, and in clinical trials of individuals with spinal cord injury (ISCIs) in particular. We sought to elucidate how two important stakeholder groups-health-care professionals (HCPs) and ISCIs-view and value both the physical and non-physical risks of stem cell interventions. Setting: The study was conducted in Canada, and included participants from both Canada and the United States America. Study design: We used semi-structured interviews to gain perspectives on risk from HCPs and ISCIs. Methods: We applied a constant comparative analytic strategy to derive themes from the discourse collected through the interviews. Results: We identified three major themes about risk from 12 HCP and 24 ISCI participants: focus, rationale and approach. The salient components of the themes differed: HCPs focus on the physical causes of risks, and the ISCIs on their downstream consequences as well as on non-physical risks; HCPs are concerned about evidence, and ISCIs about experience; and HCPs approach risk narrowly, whereas the approach of ISCIs is more broad and contextualized. Conclusion: Although major themes were common to the two stakeholder groups, the components of the themes were dissociable and illustrate differences in what HCPs and ISCIs worry about, why they worry and how they approach their worries. We draw upon these findings to make recommendations for improving risk communication and informed consent for stem cell research for spinal cord injury.

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Section: Introductionmentioning

confidence: 70%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Dissociations in the meaning of risk between health-care professionals and individuals with spinal cord injury

Eijkholt

Illes

2013

Spinal Cord

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“…15 The legitimate involvement of other sources external to the health care system such as family, friends and the Internet can also complicate this already fragile landscape, 2,13 although the involvement of peers and other affected individuals may provide still untested benefits. 7 A summary of the balances and tensions is shown in Table 4. 17 this study and others highlight that the user go-to or information-pull strategy of existing resources is simply inadequate.…”

Section: Discussionmentioning

confidence: 99%

“…Trust and effective and trusted communication in the patient-physician relationship have been linked to positive patient behaviours involving treatment decisions, compliance and information disclosure. 5 In the present study, one of a series on readiness for clinical trials, 6 decision making, 7 expectation of benefit and risk, 8 advocacy 9 and risk, 10 we sought to examine how these trusting relationships specifically are fostered and threatened in the context of the conversation about stem cell interventions for SCI.…”

Section: Introductionmentioning

confidence: 99%

Perspectives on strategies and challenges in the conversation about stem cells for spinal cord injury

Jacob

Snyder

et al. 2015

Spinal Cord

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Study design: Qualitative study. Objective: To examine how trusted communication between individuals with spinal cord injury (ISCIs) and physicians who care for ISCIs is affected by the discussion of advances in stem cell research and interventions locally and abroad. Setting: Canada and the United States (US). Methods: Semi-structured interviews with ISCIs and physicians. A thematic analysis approach was applied to more than 12 h of data to derive prominent themes and describe relationships between them. Results: A convergence of factors involving transparency impact trusted communication between ISCIs and physicians about stem cells and spinal cord injury (SCI). ISCIs expressed that trusted communication is strengthened when physicians exhibit caring, attentive and positive attitudes that are underpinned by domain-specific knowledge and scholarship. Perceived reluctance to communicate or lack of knowledge poses significant challenges. Physicians also emphasised the importance of transparency for trusted communication but expressed that the still limited clinical reality of treatment choices for SCI and the pressures imposed by external resources are significant stressors that complicate the communication landscape. Both groups cited the range and variable quality of information sources, and the difficulty associated with navigating them, as priorities for action that would remediate these tensions. Conclusions: (1) Epistemic transparency should be privileged over silence. (2) A new generation of innovations in research and clinical trial dissemination about stem cells for SCI is needed to remedy the perceived inadequacies of existing information content and accessibility.

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Clinical Trials and Spinal Cord Injury: Challenges and Therapeutic Interventions

Warner

Cragg

Steeves

et al. 2017

Neurological Aspects of Spinal Cord Injury

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Decision-making in Stem Cell Trials for Spinal Cord Injury: The Role of Networks and Peers

Cited by 6 publications

References 25 publications

Dissociations in the meaning of risk between health-care professionals and individuals with spinal cord injury

Dissociations in the meaning of risk between health-care professionals and individuals with spinal cord injury

Perspectives on strategies and challenges in the conversation about stem cells for spinal cord injury

Clinical Trials and Spinal Cord Injury: Challenges and Therapeutic Interventions

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