Evidence map›Paper›PMID 37844562›Full record

ArticleStereotactic and functional neurosurgery2023

Deep Brain Stimulation for Pediatric Dystonia: Clinicians' Perspectives on the Most Pressing Ethical Challenges.

Kristin M Kostick-Quenet, Lavina Kalwani, Laura N Torgerson, Katrina Munoz, Clarissa Sanchez, Eric A Storch, J S Blumenthal-Barby, Gabriel Lazáro-Muñoz

Open access · greenAbstract read
In one paragraph

Article in Stereotactic and functional neurosurgery, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.0field-weighted citation impact, top 22% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 5 citations in OpenAlex.

  1. Review
  2. Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 2 institutions in 1 country.

Kristin M Kostick-QuenetCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Lavina KalwaniCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Laura N TorgersonCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Katrina MunozCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Clarissa SanchezCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Eric A StorchDepartment of Psychiatry and Behavioral Sciences, Baylor College of Medicine, Houston, Texas, USA.
J S Blumenthal-BarbyCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
Gabriel Lazáro-MuñozCenter for Bioethics, Harvard Medical School, Cambridge, Massachusetts, USA.
Baylor College of Medicine · USMassachusetts General Hospital · US

Funding

Preclinical and Clincial OutcomesP50HD103555 · NICHD · BAYLOR COLLEGE OF MEDICINE · PI Sandesh Chakravarthy Sreenath Nagamani, David Loren Nelson · 2020 to 2026
$9.9M
Pediatric Deep Brain Stimulation: Neuroethics and Decision Making: Training SupplementRF1MH121371 · NIMH · BAYLOR COLLEGE OF MEDICINE · PI BLUMENTHAL-BARBY, JENNIFER, LAZARO-MUNOZ, GABRIEL · 2019 to 2020
$1.9M
NICHD NIH HHS P50 HD103555NIMH NIH HHS RF1 MH121371
6 · The paper itself

Abstract

introductionPediatric deep brain stimulation (pDBS) is commonly used to manage treatment-resistant primary dystonias with favorable results and more frequently used for secondary dystonia to improve quality of life. There has been little systematic empirical neuroethics research to identify ethical challenges and potential solutions to ensure responsible use of DBS in pediatric populations.

methodsClinicians (n = 29) who care for minors with treatment-resistant dystonia were interviewed for their perspectives on the most pressing ethical issues in pDBS.

resultsUsing thematic content analysis to explore salient themes, clinicians identified four pressing concerns: (1) uncertainty about risks and benefits of pDBS (22/29; 72%) that poses a challenge to informed decision-making; (2) ethically navigating decision-making roles (15/29; 52%), including how best to integrate perspectives from diverse stakeholders (patient, caregiver, clinician) and how to manage surrogate decisions on behalf of pediatric patients with limited capacity to make autonomous decisions; (3) information scarcity effects on informed consent and decision quality (15/29; 52%) in the context of patient and caregivers' expectations for treatment; and (4) narrow regulatory status and access (7/29; 24%) such as the lack of FDA-approved indications that contribute to decision-making uncertainty and liability and potentially limit access to DBS among patients who may benefit from it.

conclusionThese results suggest that clinicians are primarily concerned about ethical limitations of making difficult decisions in the absence of informational, regulatory, and financial supports. We discuss two solutions already underway, including supported decision-making to address uncertainty and further data sharing to enhance clinical knowledge and discovery.

Indexed as

Deep Brain StimulationDystoniaDystonic DisordersChildHumansInformed ConsentQuality of LifeChildrenDeep brain stimulationDystoniaEthicsParentsSafety

Identifiers

PMID37844562
PMCPMC10586720
OpenAlexW4385725088

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.