Evidence map›Paper›PMID 38879861›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2024

Relationship between reasons for intermittent missing patient-reported outcomes data and missing data mechanisms.

Lene Kongsgaard Nielsen, Rebecca Mercieca-Bebber, Sören Möller, Louise Redder, Mary Jarden, Christen Lykkegaard Andersen, Henrik Frederiksen, Asta Svirskaite, Trine Silkjær, Morten Saaby Steffensen and 8 more

Abstract read
In one paragraph

Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Characterizing heterogeneity in health-related quality of life trajectories in coronary artery disease: a longitudinal latent Markov analysis.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
  2. Article
  3. Review
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

18 authors.

Lene Kongsgaard NielsenDepartment of Haematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark. lene.kongsgaard.nielsen@rsyd.dk.ORCID http://orcid.org/0000-0003-2083-3870
Rebecca Mercieca-BebberUniversity of Sydney, NHMRC Clinical Trials Centre, Sydney, NSW, Australia.ORCID http://orcid.org/0000-0003-3708-9099
Sören MöllerOPEN, Open Patient Data Explorative Network, Odense University Hospital, Odense, Denmark.ORCID http://orcid.org/0000-0003-0858-4269
Louise RedderDepartment of Haematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark.ORCID http://orcid.org/0000-0003-3965-2025
Mary JardenDepartment of Haematology, Copenhagen University Hospital, Copenhagen, Denmark.
Christen Lykkegaard AndersenDepartment of Haematology, Copenhagen University Hospital, Copenhagen, Denmark.ORCID http://orcid.org/0000-0001-7753-6768
Henrik FrederiksenDepartment of Haematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark.ORCID http://orcid.org/0000-0001-8905-0220
Asta SvirskaiteDepartment of Haematology, Aalborg University Hospital, Aalborg, Denmark.
Trine SilkjærDepartment of Haematology, Aarhus University Hospital, Aarhus, Denmark.
Morten Saaby SteffensenSection of Haematology, Department of Internal Medicine, Gødstrup Hospital, Herning, Denmark.
Per Trøllund PedersenDepartment of Haematology, South West Jutland Hospital, Esbjerg, Denmark.
Maja HingeDepartment of Haematology, Vejle Hospital, Vejle, Denmark.
Mikael FrederiksenDepartment of Haematology, Hospital of Southern Jutland, Aabenraa, Denmark.
Bo Amdi JensenDepartment of Haematology, Zealand University Hospital, Roskilde, Denmark.
Carsten HellebergDepartment of Haematology, Copenhagen University Hospital, Copenhagen, Denmark.
Anne Kærsgaard MylinDepartment of Haematology, Copenhagen University Hospital, Copenhagen, Denmark.
Niels AbildgaardDepartment of Haematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark.ORCID http://orcid.org/0000-0001-6852-2014
Madeleine T KingDepartment of Haematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark.ORCID http://orcid.org/0000-0001-7192-2887

Funding

The Danish Cancer Society R150-A10023
6 · The paper itself

Abstract

purposeNon-response (NR) to patient-reported outcome (PRO) questionnaires may cause bias if not handled appropriately. Collecting reasons for NR is recommended, but how reasons for NR are related to missing data mechanisms remains unexplored. We aimed to explore this relationship for intermittent NRs.

methodsPatients with multiple myeloma completed validated PRO questionnaires at enrolment and 12 follow-up time-points. NR was defined as non-completion of a follow-up assessment within seven days, which triggered contact with the patient, recording the reason for missingness and an invitation to complete the questionnaire (denoted "salvage response"). Mean differences between salvage and previous on-time scores were estimated for groups defined by reasons for NR using linear regression with clustered standard errors. Statistically significant mean differences larger than minimal important difference thresholds were interpreted as "missing not at random" (MNAR) mechanism (i.e. assumed to be related to declining health), and the remainder interpreted as aligned with "missing completely at random" (MCAR) mechanism (i.e. assumed unrelated to changes in health).

resultsMost (7228/7534 (96%)) follow-up questionnaires were completed; 11% (802/7534) were salvage responses. Mean salvage scores were compared to previous on-time scores by reason: those due to hospital admission, mental or physical reasons were worse in 10/22 PRO domains; those due to technical difficulties/procedural errors were no different in 21/22 PRO domains; and those due to overlooked/forgotten or other/unspecified reasons were no different in any domains.

conclusionIntermittent NRs due to hospital admission, mental or physical reasons were aligned with MNAR mechanism for nearly half of PRO domains, while intermittent NRs due to technical difficulties/procedural errors or other/unspecified reasons generally were aligned with MCAR mechanism.

Indexed as

Multiple MyelomaPatient Reported Outcome MeasuresAdultAgedAged, 80 and overFemaleHumansMaleMiddle AgedQuality of LifeSurveys and QuestionnairesMissing dataMissing data mechanismMultiple myelomaPatient-reported outcomesQuality of life

Identifiers

PMID38879861
PMCPMC11390842

What OpenQuestion holds

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Registered trials

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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.