Evidence map›Paper›PMID 41641612›Full record

ArticleJournal of the American Geriatrics Society2026

How to Analyze Longitudinal Patient-Reported Outcomes in Populations With High Mortality Rates.

Joosje C Baltussen, Nienke A de Glas, Saskia le Cessie, Stella Trompet, Simon P Mooijaart, Johanneke E A Portielje, Frederiek van den Bos

Abstract read
In one paragraph

Article in Journal of the American Geriatrics Society, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Factors independently associated with in-hospital HRQoL in adults treated at a high-complexity institution in a middle-income country.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  2. 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

7 authors.

Joosje C BaltussenDepartment of Medical Oncology, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0001-8635-2581
Nienke A de GlasDepartment of Medical Oncology, Leiden University Medical Center, Leiden, the Netherlands.
Saskia le CessieDepartment of Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands.
Stella TrompetDepartment of Internal Medicine, Section of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, the Netherlands.
Simon P MooijaartDepartment of Internal Medicine, Section of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0003-3106-3568
Johanneke E A PortieljeDepartment of Medical Oncology, Leiden University Medical Center, Leiden, the Netherlands.
Frederiek van den BosDepartment of Internal Medicine, Section of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, the Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAnalyzing longitudinal patient-reported outcomes (PROs) remains methodologically challenging, particularly in populations with high mortality rates during follow-up. Many PRO studies overlook this issue, potentially leading to biased estimates and limited clinical interpretability. We discuss various methods for analyzing patients who died during follow-up in PRO analyses and examine how these methods affect the interpretation of the study outcomes, using a clinical example in older patients with cancer.

methodsFor our clinical example, we included adults aged

resultsOf the 1218 participants, 321 (26%) died within 12 months. Methods restricted to the 897 survivors at the end of follow-up lead to results that are difficult to interpret due to selection bias. In linear mixed models, EQ-5D scores are implicitly reconstructed for the 321 participants that died, creating a hypothetical view of QoL assuming no patients died. Alternative approaches, such as the "while-alive" strategy or composite endpoint strategies, treating death as the worst possible score on the EQ-5D, produce more complete views of the QoL.

conclusionsThe interpretation of longitudinal PROs strongly depends on the chosen method, associated estimands and how patients that died are addressed: different methods lead to different estimates and conclusions. Properly defining the research question and choosing the most appropriate method is essential for meaningful interpretations for clinicians and patients.

Indexed as

NeoplasmsPatient Reported Outcome MeasuresQuality of LifeAgedAged, 80 and overFemaleHumansLongitudinal StudiesMaleProspective Studiesgeriatric oncologymethodologyolder adultspatient‐reported outcomequality of life

Identifiers

PMID41641612
PMCPMC13080064

What Socratic holds

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LicenceCC BY-NC-ND
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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 Socratic graph.