TY - JOUR
T1 - Relationship between reasons for intermittent missing patient-reported outcomes data and missing data mechanisms
AU - Nielsen, Lene Kongsgaard
AU - Mercieca-Bebber, Rebecca
AU - Möller, Sören
AU - Redder, Louise
AU - Jarden, Mary
AU - Andersen, Christen Lykkegaard
AU - Frederiksen, Henrik
AU - Svirskaite, Asta
AU - Silkjær, Trine
AU - Steffensen, Morten Saaby
AU - Pedersen, Per Trøllund
AU - Hinge, Maja
AU - Frederiksen, Mikael
AU - Jensen, Bo Amdi
AU - Helleberg, Carsten
AU - Mylin, Anne Kærsgaard
AU - Abildgaard, Niels
AU - King, Madeleine T
N1 - © 2024. The Author(s).
PY - 2024/9
Y1 - 2024/9
N2 - 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.
AB - 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.
KW - Adult
KW - Aged
KW - Aged, 80 and over
KW - Female
KW - Humans
KW - Male
KW - Middle Aged
KW - Multiple Myeloma/psychology
KW - Patient Reported Outcome Measures
KW - Quality of Life
KW - Surveys and Questionnaires
U2 - 10.1007/s11136-024-03707-y
DO - 10.1007/s11136-024-03707-y
M3 - Article
C2 - 38879861
SN - 0962-9343
VL - 33
SP - 2387
EP - 2400
JO - Quality of Life Research
JF - Quality of Life Research
IS - 9
ER -