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

Abstract

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.

Patient and public perspectives on cell and gene therapies: a systematic review

“…Five of the included studies were conducted in the UK [12][13][14][15][16] , eight in the USA [17][18][19][20][21][22][23][24] , six in Canada [25][26][27][28][29][30] , two were conducted in Australia 31,32 and one each from Belgium 33 , China 34 , Germany 35 , Hungary 36 , Ireland 37 , Japan 38 , Korea 39 , South Korea 40 and Sweden 41 . One study included multiple countries across Europe 42 , three studies were set in Canada and USA [43][44][45] and one included Europe, USA and Canada 46 . Supplementary Table 4 provides further details on the characteristics of these studies and their critical appraisal.…”

A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders

“…Furthermore, physicians often lack adequate information about interventions in a field that is continuously changing [43,45] and may prefer that patients take the lead in their medical care [23,44,47]. These factors can contribute to a reluctance to discuss stem cell interventions that might result in the perception of physician indifference [18,45], or in the case of one of our respondents, as arrogance, potentially damaging trust in the patient-physician relationship. As Rachul and others have reported, damaged relationships with physicians at home may indeed elevate the experience of individuals abroad [17][18][19].…”

“…Respondents stressed the importance of healthcare provider communication, openness and honesty and were hesitant about approaching their child's physician about stem cell interventions when these qualities were lacking. Barriers to communication have been identified in previous research including the concern that dissuading patients or their families from seeking medical services abroad may harm the physician-patient relationship [43][44][45][46]. Furthermore, physicians often lack adequate information about interventions in a field that is continuously changing [43,45] and may prefer that patients take the lead in their medical care [23,44,47].…”

“…Barriers to communication have been identified in previous research including the concern that dissuading patients or their families from seeking medical services abroad may harm the physician-patient relationship [43][44][45][46]. Furthermore, physicians often lack adequate information about interventions in a field that is continuously changing [43,45] and may prefer that patients take the lead in their medical care [23,44,47]. These factors can contribute to a reluctance to discuss stem cell interventions that might result in the perception of physician indifference [18,45], or in the case of one of our respondents, as arrogance, potentially damaging trust in the patient-physician relationship.…”

“…Finally, given the difficulties physicians can face in staying up to date on the latest developments in stem cells [43,45] and their concerns about damaging the doctor-patient relationship, another avenue of proactive engagement with parents lies in Scott's [53] call for stem cell counsellors. These counsellors, akin to genetic counsellors with psychosocial training and a focus on non-directive communication, could work alongside physicians to connect with parents seeking treatment for their child abroad in person or over the Internet and provide guidance about the potential risks of unproven therapies to facilitate informed decision-making.…”