Evidence map›Paper›PMID 38923593›Full record

ArticleThe Journal of dermatology2024

The impact of cutaneous neurofibromas on quality of life and mental health in neurofibromatosis type 1.

Brieana Dance, Alice Dardare, Jane Fleming, Sue-Faye Siow, Timothy E Schlub, Hilda Crawford, Rebecca B Saunderson, Claire Wong, Yemima Berman

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The Journal of dermatology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
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

6 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
  4. Article
  5. Article
  6. 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

9 authors.

Brieana DanceDepartment of Clinical Genetics, Northern Sydney Local Health District, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0001-7858-0891
Alice DardareNorthern Clinical School, Faculty of Health and Medicine, University of Sydney, Sydney, New South Wales, Australia.
Jane FlemingDepartment of Clinical Genetics, Northern Sydney Local Health District, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0003-1164-2386
Sue-Faye SiowDepartment of Clinical Genetics, Northern Sydney Local Health District, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0003-1485-0228
Timothy E SchlubSydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, New South Wales, Australia.
Hilda CrawfordDepartment of Clinical Genetics, Northern Sydney Local Health District, Sydney, New South Wales, Australia.
Rebecca B SaundersonDepartment of Dermatology, Northern Sydney Local Health District, Sydney, New South Wales, Australia.
Claire WongDepartment of Clinical Genetics, Northern Sydney Local Health District, Sydney, New South Wales, Australia.
Yemima BermanDepartment of Clinical Genetics, Northern Sydney Local Health District, Sydney, New South Wales, Australia.ORCID https://orcid.org/0000-0003-2495-4928

Funding

NSW Office of Health and Medical Research, AustraliaThe Children's Tumour Foundation, Australia
6 · The paper itself

Abstract

The skin manifestations of neurofibromatosis 1 significantly reduce health-related quality-of-life. However, data on the utility of existing surveys in capturing neurofibromatosis 1 skin treatment outcomes are lacking. This quantitative study examined the relationship between clinician-rated severity and visibility and patient-rated itch and quality-of-life (QoL) to (1) establish baseline levels of skin- and condition-specific-related QoL, itch, depression and anxiety; (2) identify patient concerns to inform the development and evaluation of skin interventions; and (3) compare the sensitivity of different QoL measures. Validated scales included Skindex-29, Dermatology Life Quality Index (DLQI), Neurofibromatosis 1-adult quality-of-life (NF1-AdQOL) questionnaire, and the Hospital Anxiety and Depression Scale (HADS). We recruited 100 participants (response rate: 95%). Of these, 42% reported itch and 23% had probable clinical anxiety. Our cohort had higher levels of anxiety and total HADS scores compared to a control population. Using multivariate regression analysis, increasing visibility significantly predicted poorer QoL using the Skindex-29, NF1-AdQOL, and DLQI (p < 0.05); and itch significantly predicted worse QoL in Skindex-29 and NF1-AdQOL (p < 0.05). The highest mean scoring questions in Skindex-29 and NF1-AdQOL concerned worry about worsening skin disease and embarrassment. The highest mean scoring questions in DLQI were regarding itch, pain, and embarrassment. Items asking specifically about cutaneous neurofibromas (cNF) scored higher than comparable skin-specific questions (t-test p value <0.05). In summary, this study provides insights into the factors contributing to impaired QoL, anxiety, and mood in NF1 patients with cutaneous neurofibromas. Key factors identified for use in cNF measures include visibility, itch, anxiety, embarrassment, fears of worsening skin disease, and cNF-specific questions.

Indexed as

AnxietyMental HealthNeurofibromatosis 1PruritusQuality of LifeSkin NeoplasmsAdolescentAdultAgedDepressionFemaleHumansMaleMiddle AgedNeurofibromaSeverity of Illness Indexmental healthneurofibromatosispatient reported outcome measuresquality of lifetreatment

Identifiers

PMID38923593
PMCPMC11483957

What OpenQuestion holds

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LicenceCC BY
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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.