Evidence map›Paper›PMID 41400724›Full record

ArticleFamilial cancer2025

"It's not any one thing, it's always all of them, all at the same time": quality of life in NF2-related schwannomatosis from patient and clinician perspectives.

Sophia C Carias, Frank D Buono, Liesel Von Imhof, Sneha M Yelamanchili, Hilary Chan, Kaleb H Yohay, P Leia Nghiemphu, Dusica Babovic-Vuksanovic, Scott R Plotkin, Vanessa L Merker

Abstract read
PubMed Publisher
In one paragraph

Article in Familial cancer, 2025. 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
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.

  1. Development and Initial Validation of the Quality of life Evaluation inmedRxiv : the preprint server for health sciences · 2026
    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

10 authors.

Sophia C CariasMassachusetts General Hospital, 55 Fruit St, BHX 1.148, Boston, MA, 02114, USA.ORCID 0009-0009-8974-5896
Frank D BuonoYale School of Medicine, New Haven, CT, USA.ORCID 0000-0003-1324-7857
Liesel Von ImhofMassachusetts General Hospital, 55 Fruit St, BHX 1.148, Boston, MA, 02114, USA.
Sneha M YelamanchiliHarvard College, Cambridge, MA, USA.
Hilary ChanHarvard College, Cambridge, MA, USA.
Kaleb H YohayNYU Langone Health, New York, NY, USA.ORCID 0000-0001-5560-3392
P Leia NghiemphuUniversity of California Los Angeles, Los Angeles, CA, USA.ORCID 0000-0003-4064-6079
Dusica Babovic-VuksanovicMayo Clinic, Rochester, MN, USA.ORCID 0000-0001-6981-1352
Scott R PlotkinMassachusetts General Hospital, 55 Fruit St, BHX 1.148, Boston, MA, 02114, USA.ORCID 0000-0002-6109-6419
Vanessa L MerkerMassachusetts General Hospital, 55 Fruit St, BHX 1.148, Boston, MA, 02114, USA. vmerker@mgh.harvard.edu.ORCID 0000-0002-4542-5227

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

While the physical manifestations of NF2-related schwannomatosis (NF2-SWN) have been well documented, there are a limited number of qualitative studies on health-related quality of life in NF2-SWN. The present study sought to explore the cumulative impact of symptoms, treatments, and healthcare on the quality of life of individuals with NF2-SWN. We interviewed 16 adolescent and adult patients with NF2-SWN enrolled in the INTUITT-NF2 clinical trial and 10 clinicians with NF2-SWN expertise from the United States, United Kingdom, and Australia. Analysis of patient and clinician interviews yielded five overall themes: (1) impacts on daily living, (2) impacts on life roles, (3) impacts on relationships and social integration, (4) impacts on psychological and emotional wellbeing, and (5) burden of treatment and healthcare. Multiple symptom areas contributed to impairments in quality of life across each theme. These findings reveal that quality of life in NF2-SWN is shaped not only by individual symptoms, but by their complex, cumulative impact-highlighting the urgent need for disease-specific tools and holistic care approaches that reflect the lived realities of patients across the lifespan.

Indexed as

NeurilemmomaNeurofibromatosesNeurofibromatosis 2Quality of LifeSkin NeoplasmsActivities of Daily LivingAdolescentAdultAustraliaFemaleHumansMaleMiddle AgedQualitative ResearchUnited KingdomUnited StatesActivities of daily livingGenetic counselingNeurofibromatosis 2Qualitative researchQuality of lifeSocial integration

Identifiers

PMID41400724

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.