Evidence map›Paper›PMID 32924306›Full record

ArticleMolecular genetics & genomic medicine2020

Health service experiences among adults with hereditary spastic paraparesis or neurofibromatosis type 1.

Krister W Fjermestad, Øivind Kanavin, Livø Nyhus, Lise B Hoxmark

Open access · goldAbstract readLetter
PubMed Full text at PMC Publisher
In one paragraph

Article in Molecular genetics & genomic medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact, top 90% 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

1 citing paper in PubMed, 0 citations in OpenAlex.

  1. 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

4 authors at 2 institutions in 1 country.

Krister W FjermestadDepartment of Psychology, University of Oslo, Oslo, Norway.ORCID 0000-0001-7501-0033
Øivind KanavinFrambu resource centre for rare disorders, Siggerud, Norway.
Livø NyhusFrambu resource centre for rare disorders, Siggerud, Norway.
Lise B HoxmarkFrambu resource centre for rare disorders, Siggerud, Norway.
The FRAM Centre · NOUniversity of Oslo · NO

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPersons with rare disorders may experience poorer health services due to limited knowledge about rare disorders among health professionals. Knowledge about how persons with rare disorders perceive health services can help inform service providers to enhance their practices.

methodsWe conducted a self-report survey among adults with the rare disorders hereditary spastic paraparesis (HSP; n = 108; mean age 57.7 years; 54.2% females) and neurofibromatosis type 1 (NF1, n = 142; mean age = 50.3 years; 62.0% females). Their responses concerning perceived health experiences were compared to healthy controls from the population study HUNT-3 (n = 7,312).

resultsBoth rare disorder groups reported lower satisfaction, trust, and participation in meetings with their general practitioner and specialist health services. More reported health problems were overall associated with poorer health service experiences.

conclusionThere is a need to identify predictors of health service experiences at the patient and health service provider levels with the aim to tighten the gap between the health experiences of patients with and without rare disorders.

Indexed as

Patient SatisfactionAdultFemaleHumansMaleNeurofibromatosis 1PatientsSpastic Paraplegia, Hereditaryhealth service experienceshereditary spastic paraparesisHSPneurofibromatosis type 1NF1

Identifiers

PMID32924306
PMCPMC7549577
OpenAlexW3085321436

What OpenQuestion holds

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Registered trials

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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.