Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with (...) refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

BackgroundDeep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies hav...

Harcourt argues that in clinical contexts, children and young people with mental health illness can experience epistemic, specifically testimonial, injustice when their perspectives are unjustifiably discounted by health service providers.1 Our goal in this commentary was to illustrate how caregivers, a critical component of CYP treatment triad, can also engage in testimonial injustice towards CYP patients. Testimonial injustice occurs when one suffers a credibility deficit and that credibility deficit is based on prejudice.2 Harcourt expands Fricker’s account of testimonial injustice by (...) arguing that for CYPs, the credibility deficits attributed to them by clinicians, for example, may result from epistemic arrogance in that CYPs are viewed as having unreliable knowledge about their condition. Harcourt writes: ‘Being a CYP is treated as a heuristic for epistemic unreliability across a wide range of domains’, including clinical settings. Harcourt’s expansion of Fricker’s account thus includes epistemic arrogance as an alternative necessary condition, in addition to prejudice, to apply the concept of testimonial injustice. We think Harcourt’s argument can also be extended to caregivers, who are central to the CYP treatment triad. We illustrate how this may be the case by drawing from research we conducted to understand the perspectives of clinicians and prospective families, both caregivers and paediatric patients with obsessive–compulsive disorder about the possibility of …. (shrink)

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts (...) to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD. (shrink)

While the intellectual challenge of digital phenotyping (DP) has evolved from data collection to more complex data analysis (Onnela 2021), core ethical considerations remain centered on patient pri...

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and MethodsSemi-structured interviews (...) with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations. (shrink)

The current study was a cross-sectional research and aimed to investigate the factor structure, internal consistency, and validities of the Persian version of the Teasing Questionnaire-Revised. Forward and backward translations of the TQ-R were performed; face and content validities were determined based on comments by a sample of psychology students and specialists. Using the cluster sampling method, 290 participants were recruited, and 201 valid data were analyzed. The factor structure was assessed by confirmatory and exploratory factor analysis. The result of (...) the confirmatory factor analysis did not confirm the proposed three, four, and five-factor models. EFA revealed four factors with 23 items, explaining 52.03% of the total variance. The internal consistency of the Persian version of Teasing Questionnaire 23 was in the excellent range, and its expected associations with external correlates supported the measure’s convergent validity. The findings indicated that the Persian version of the TQ-R has sound psychometric properties and can be used as a valid and reliable tool in research and clinical outcomes. (shrink)

BackgroundPublic health guidelines have recommended that elective medical procedures, including deep brain stimulation surgery for Parkinson’s disease, should not be scheduled during the coronavirus pandemic to prevent further virus spread and overload on health care systems. However, delaying DBS surgery for PD may not be in the best interest of individual patients and is not called for in regions where virus spread is under control and inpatient facilities are not overloaded.MethodsWe administered a newly developed phone questionnaire to 20 consecutive patients (...) with PD who received DBS surgery in Ruijin Hospital in Shanghai during the COVID-19 pandemic. The questionnaire was designed to gather the patients’ experiences and perceptions on the impact of COVID-19 on their everyday activities and access to medical care.ResultsMost of the patients felt confident about the preventive measures taken by the government and hospitals, and they have changed their daily living activities accordingly. Moreover, a large majority of patients felt confident obtaining access to regular and COVID-19-related health care services if needed. Routine clinical referral, sense of security in the hospital during the outbreak, and poor control of PD symptoms were the three main reasons given by patients for seeking DBS surgery during the COVID-19 pandemic.ConclusionThe COVID-19 pandemic has considerably impacted medical care and patients’ lives but elective procedures, such as DBS surgery for PD, do not need to be rescheduled when the health care system is not overloaded and adequate public health regulations are in place. (shrink)

Volume 20, Issue 7, July 2020, Page 207-209.