Evidence mapPaperPMID 42558255Full record

SynthesisFrontiers in immunology2026

Values and preferences of patients with inborn errors of immunity and their caregivers: a systematic review.

Daniel G Rayner, Michael Nakhla, Leonardo Ologundudu, Veronika Sustrova, Jenny Garkaby, Rongbo Zhu

Abstract readSystematic Review
In one paragraph

Synthesis in Frontiers in immunology, 2026. 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
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

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

6 authors.

Daniel G RaynerSchulich School of Medicine and Dentistry, Western University, London, ON, Canada.
Michael NakhlaSchulich School of Medicine and Dentistry, Western University, London, ON, Canada.
Leonardo OlogunduduMichael G. DeGroote School of Medicine, McMaster University, Hamilton, ON, Canada.
Veronika SustrovaDavid R. Cheriton School of Computer Science, University of Waterloo, Waterloo, ON, Canada.
Jenny GarkabyDivision of Clinical Immunology, Allergy and Dermatology, Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
Rongbo ZhuSchulich School of Medicine and Dentistry, Western University, London, ON, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Understanding patient values and preferences can provide valuable insight and help improve patient care for patients with inborn errors of immunity (IEIs). Therefore, this review sought to systematically review the values and preferences of patients with IEIs and their caregivers towards the management of IEIs. We searched MEDLINE, Embase, PsycINFO, and CINAHL from database inception up to June 7, 2026, for studies addressing the values and preferences of patients with IEIs or their caregivers. Paired reviewers independently screened citations, extracted data, and assessed risk of bias. We used iterative thematic content analysis to qualitatively synthesize our findings and the GRADE-CERQual approach to rate the confidence of the evidence supporting each theme. Fifty-two studies enrolled 6,388 participants. We identified 6 key themes: (1) Patients are probably more willing to engage with and accept treatment if counseled by healthcare professionals knowledgeable in IEIs (moderate confidence). Patients probably place a high value on IEI treatments that (2) minimize needle pricks and adverse effects, and (3) maximize independence, efficiency, and flexibility (moderate confidence). (4) Patients probably place a high value on effective transitions from pediatric to adult care services (moderate confidence). (5) Patients may have significant concerns about the financial impact of IEI management (low confidence). (6) Patients may place a high value on the integration of mental health and social support into their care (low confidence). Ultimately, these 6 key themes on the values and preferences of patients with IEIs and their caregivers may inform optimal clinical practice and future research in IEIs. Systematic review registration: https://www.crd.york.ac.uk/PROSPERO/, identifier CRD420251114032.

Indexed as

CaregiversPatient PreferenceHumansinborn errors of immunitypatient preferencesprimary immunodeficienciessystematic reviewthematic synthesis

Identifiers

PMID42558255
PMCPMC13437357

What Socratic holds

Textmetadata
LicenceCC BY
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 Socratic graph.