Evidence map›Paper›PMID 40138115›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025

The caregiver burden of idiopathic inflammatory myopathies.

Parker Brady, Roberto Sergio Hernandez, Amber Salter, Catherine Hua, Lynn Wilson, Manuel Lubinus, Yuan-Pai Hu, Dhruv Nandakumar, Abhiram R Bhashyam, Salman Bhai

Abstract read
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In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. 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
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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.

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

10 authors.

Parker BradyDepartment of Neurology, University of Texas Southwestern Medical Center, Dallas, TX, USA. parkerdavidbrady@gmail.com.ORCID http://orcid.org/0000-0002-3244-1068
Roberto Sergio HernandezDepartment of Neurology, Section on Statistical Planning and Analysis, University of Texas Southwestern Medical Center, Dallas, TX, USA.ORCID http://orcid.org/0000-0003-3143-682X
Amber SalterDepartment of Neurology, Section on Statistical Planning and Analysis, University of Texas Southwestern Medical Center, Dallas, TX, USA.ORCID http://orcid.org/0000-0002-1088-110X
Catherine HuaDepartment of Orthopedics, Massachusetts General Hospital, Boston, MA, USA.ORCID http://orcid.org/0000-0003-0455-5364
Lynn WilsonMyositis Support and Understanding, Patient-Centered Research, Lincoln, DE, USA.
Manuel LubinusMyositis Support and Understanding, Patient-Centered Research, Lincoln, DE, USA.
Yuan-Pai HuMyositis Support and Understanding, Patient-Centered Research, Lincoln, DE, USA.
Dhruv NandakumarDepartment of Neurology, University of Texas Southwestern Medical Center, Dallas, TX, USA.
Abhiram R BhashyamDepartment of Orthopedics, Massachusetts General Hospital, Boston, MA, USA.ORCID http://orcid.org/0000-0002-9170-4745
Salman BhaiDepartment of Neurology, University of Texas Southwestern Medical Center, Dallas, TX, USA.ORCID http://orcid.org/0000-0003-4702-9380

Funding

UT Southwestern Center for Translational MedicineUL1TR003163 · NCATS · UT SOUTHWESTERN MEDICAL CENTER · PI TOTO, ROBERT DANIEL · 2021 to 2025
$39.3M
NCATS NIH HHS UL1 TR003163
6 · The paper itself

Abstract

purposeThe purpose of this cross-sectional study was to determine the prevalence of caregiver burden (CB) in caregivers of patients with idiopathic inflammatory myopathies (IIM).

methodsAn anonymous survey was distributed worldwide to caregivers of myositis patients through Myositis Support and Understanding in May 2022. CB was measured using the Zarit Burden Interview. The survey also gathered caregiver demographic, financial, and insurance information as well as patient demographic and disease information.

resultsOverall, 75.8% of caregivers had at least mild to moderate CB. 39.2% reported not being affected financially by their caregiving responsibilities. A positive effect was found between CB and time since diagnosis, disability level, and financial hardship. A negative effect was found with CB and caregiver age. No association was found between IIM type and CB.

conclusionCB is a common experience among caregivers of all types of IIM patients. Future research can use our results to generate viable hypothesis about CB in myositis. They should also seek to further understand what contributed to CB in this population. Clinicians should also be attuned to the needs of caregivers tending to long-term myositis patients, especially caregivers of more disabled patients, older caregivers, and individuals financially challenged by caregiving.

Indexed as

Caregiver BurdenCaregiversCost of IllnessMyositisAdultAgedCross-Sectional StudiesFemaleHumansMaleMiddle AgedQuality of LifeSurveys and QuestionnairesCaregiver burdenDermatomyositisIdiopathic inflammatory myopathiesInclusion body myositisMyositis

Identifiers

PMID40138115

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.