Evidence map›Paper›PMID 29804213›Full record

ArticleChild's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery2018

Spinal cord issues in adult patients with MPS: transition of care survey.

Kemel A Ghotme, Fernando Alvarado-Gomez, Christina Lampe, Klane K White, Martha Solano-Villareal, Roberto Giugliani, Paul R Harmatz

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In one paragraph

Article in Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
0.4field-weighted citation impact, top 29% 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

5 citing papers in PubMed, 5 citations in OpenAlex.

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  5. Review
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

7 authors at 7 institutions in 4 countries.

Kemel A GhotmeTranslational Neuroscience Research Lab, Faculty of Medicine, Universidad de La Sabana, Chia, Colombia. kemelgg@unisabana.edu.co.ORCID 0000-0001-6802-4373
Fernando Alvarado-GomezDepartment of Orthopedics, Spine Surgery Section, Fundación Santafé de Bogotá, Bogota, Colombia.
Christina LampeCenter for Rare Diseases, Clinic for Children and Adolescents, Helios Dr. Horst Schmidt Kliniken, Wiesbaden, Germany.
Klane K WhiteDepartment of Orthopedics and Sport Medicine, University of Washington School of Medicine and Seattle Children's Hospital, Seattle, WA, USA.
Martha Solano-VillarealFundacion Cardioinfantil, Bogota, Colombia.
Roberto GiuglianiMed Genet Serv HCPA, Dep Genet UFRGS & INAGEMP, Porto Alegre, Brazil.
Paul R HarmatzUCSF Benioff Children's Hospital Oakland, Oakland, CA, USA.
Fundación Santa Fe de Bogotá · COHelios Dr. Horst Schmidt Kliniken Wiesbaden · DEInstitute of Cardiology · COSeattle Children's Hospital · USUCSF Benioff Children's Hospital · USUniversidad de La Sabana · COUniversidade Federal do Rio Grande do Sul · BR

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeThis study aims to raise awareness of the need for research and appropriate guidelines for managing spinal cord issues in adult patients with mucopolysaccharidosis (MPS) and transition of these patients from pediatric to adult care.

methodsPediatric/adult neurosurgeons, orthopedic spine surgeons, and treating physicians with expertise in metabolic disorders and spinal cord issues were invited to complete a survey to assess their experience with spinal cord problems in MPS and their opinion on transitioning routes from pediatric to adult care.

resultsTwenty specialists completed the survey; 16 had treated spinal cord issues in patients with MPS. Foramen magnum and cervical stenosis (87%), atlanto-axial instability (67%), and lumbar spine instability (33%) were the main spinal cord issues encountered; 28% had treated adult patients for one or more spinal cord issues. In 40% of cases, this concerned an intervention or procedures performed during childhood. The main specialist responsible for the care of adult patients with MPS differed considerably between institutions and included both pediatric and adult specialists (30% pediatric neurosurgeons, 10% pediatric spine orthopedic surgeons, 30% adult spine neurosurgeons, 20% general adult surgeons). The preferred option (> 50%) for the transition of care was an interdisciplinary team of pediatric and adult specialists.

conclusionsFurther work needs to be done to address problems of managing spinal cord issues in adult patients with MPS. Currently, the responsibility for the care of patients with MPS with spinal cord issues is inconsistent. The best strategy for transitioning these patients from pediatric to adult care is likely an interdisciplinary approach.

Indexed as

Health PersonnelSurveys and QuestionnairesAdultFemaleHumansMaleMucopolysaccharidosesSpinal Cord DiseasesTransition to Adult CareMucopolysaccharidosesSpinal cordSurveyTransition to adult care

Identifiers

PMID29804213
OpenAlexW2803527100

What OpenQuestion holds

Textmetadata
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.