Evidence map›Paper›PMID 34839412›Full record

ArticleNeurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology2022

Source of medical information and behavioral seeking patterns in patients affected with Friedreich's ataxia and their caregivers: a survey study.

Giuseppina Miele, Luigi Lavorgna, Stefania Federica De Mercanti, Marco Iudicello, Gianmarco Abbadessa, Manuela Matta, Simona Bonavita, Marinella Clerico

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In one paragraph

Article in Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
0.2field-weighted citation impact, top 54% 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

0 citing papers in PubMed, 2 citations in OpenAlex.

No citing paper in PubMed yet.

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.

Giuseppina Miele *Second Division of Neurology, Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Via Pansinis 5, 80134, Naples, Italy.
Luigi Lavorgna *First Division of Neurology, Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Piazza Miraglia 2, 80138, Naples, Italy. luigi.lavorgna@policliniconapoli.it.
Stefania Federica De MercantiClinical and Biological Sciences Department, Neurology Unit, University of Torino, San Luigi Gonzaga Hospital, Regione Gonzole, 10, 10043, Orbassano, Turin, Italy.
Marco IudicelloClinical and Biological Sciences Department, Neurology Unit, University of Torino, San Luigi Gonzaga Hospital, Regione Gonzole, 10, 10043, Orbassano, Turin, Italy.
Gianmarco AbbadessaSecond Division of Neurology, Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Via Pansinis 5, 80134, Naples, Italy.
Manuela MattaClinical and Biological Sciences Department, Neurology Unit, University of Torino, San Luigi Gonzaga Hospital, Regione Gonzole, 10, 10043, Orbassano, Turin, Italy.
Simona BonavitaSecond Division of Neurology, Department of Advanced Medical and Surgical Sciences, University of Campania "Luigi Vanvitelli", Via Pansinis 5, 80134, Naples, Italy.
Marinella ClericoClinical and Biological Sciences Department, Neurology Unit, University of Torino, San Luigi Gonzaga Hospital, Regione Gonzole, 10, 10043, Orbassano, Turin, Italy.
Ospedale San Luigi Gonzaga · ITUniversity of Campania "Luigi Vanvitelli" · IT

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundFriedreich's ataxia (FRDA) is an untreatable disease that negatively impacts patients' and caregivers' quality of life.

objectivesThe aims were to improve the quality of the information for FRDA patients and caregivers and suggest a possible tool to spread this information. MATERIAL AND

methodsThirty-four FRDA patients and 45 caregivers were interviewed separately using a structured self-administered survey about their information-seeking behavior, their level of expectation and satisfaction for the information received, and the need for further information. RESULTS AND

conclusionFor patients and caregivers, the main source of information was the FRDA specialist and the media. The most searched items were "general information"; patients and particularly caregivers desired to get more information on existing and experimental therapies. Adequate information supply is part of good medical care; therefore, a deeper insight of clinicians in information-seeking behavior of FRDA patients and caregivers would provide tailored information and improve therapeutic alliance.

Indexed as

Friedreich AtaxiaCaregiversHumansQuality of LifeDigital information resourcesFriedreich’s ataxiaInformation sourcesPatient information

Identifiers

PMID34839412
OpenAlexW3216948586

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.