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

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningfagfællebedømt

  • Lene Kongsgaard Nielsen
  • Rebecca Mercieca-Bebber
  • Sören Möller
  • Louise Redder
  • Jarden, Mary Ellen
  • Christen Lykkegaard Andersen
  • Henrik Frederiksen
  • Asta Svirskaite
  • Trine Silkjær
  • Morten Saaby Steffensen
  • Per Trøllund Pedersen
  • Maja Hinge
  • Mikael Frederiksen
  • Bo Amdi Jensen
  • Carsten Helleberg
  • Anne Kærsgaard Mylin
  • Niels Abildgaard
  • Madeleine T. King
Purpose
Non-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.

Methods
Patients 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).

Results
Most (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.

Conclusion
Intermittent 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.
OriginalsprogEngelsk
TidsskriftQuality of Life Research
ISSN0962-9343
DOI
StatusAccepteret/In press - 2024

Bibliografisk note

Funding Information:
Open access funding provided by Odense University Hospital. This study was funded by The Danish Cancer Society (Grant Number R150-A10023), The Faculty of Health Sciences at The University of Southern Denmark, Amgen A/S, Celgene A/S, Takeda A/S, Janssen A/S and Family Kj\u00E6rgaaard Sunds.

Publisher Copyright:
© The Author(s) 2024.

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