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

Lene Kongsgaard Nielsen1,2, Rebecca Mercieca-Bebber3, Sören Möller4,5

  • 1Department of Haematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark. lene.kongsgaard.nielsen@rsyd.dk.

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Summary

Reasons for non-response to patient-reported outcome questionnaires matter. Non-response due to health issues suggests missing not at random data, while technical issues indicate missing completely at random data.

Keywords:
Missing dataMissing data mechanismMultiple myelomaPatient-reported outcomesQuality of life

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Area of Science:

  • Clinical Research
  • Biostatistics
  • Health Outcomes Research

Background:

  • Non-response to patient-reported outcome (PRO) questionnaires can introduce bias in clinical studies.
  • Understanding the reasons for non-response is crucial for appropriate data handling.
  • The relationship between reasons for non-response and missing data mechanisms is not well-understood.

Purpose of the Study:

  • To investigate the association between reasons for intermittent non-response (NR) and missing data mechanisms in PRO questionnaires.
  • To determine if specific reasons for NR align with missing not at random (MNAR) or missing completely at random (MCAR) mechanisms.

Main Methods:

  • Patients with multiple myeloma completed PRO questionnaires over time.
  • Non-response was defined as failure to complete a questionnaire within seven days, prompting follow-up.
  • Reasons for NR were recorded, and salvage response scores were compared to previous on-time scores using linear regression to infer missing data mechanisms (MNAR vs. MCAR).

Main Results:

  • 96% of follow-up questionnaires were completed, with 11% being salvage responses.
  • Non-response due to hospital admission, mental, or physical reasons was associated with worse PRO scores in 10/22 domains.
  • Non-response due to technical issues or overlooked reasons showed no significant difference in PRO scores across most domains.

Conclusions:

  • Intermittent non-response linked to hospital admission or health reasons suggests a missing not at random (MNAR) mechanism for nearly half of PRO domains.
  • Non-response attributed to technical difficulties or forgotten questionnaires generally aligns with a missing completely at random (MCAR) mechanism.