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Multicenter Study
. 2024 May;84(2):635-645.
doi: 10.1007/s12020-023-03628-9. Epub 2023 Dec 16.

The impact of electronic versus paper-based data capture on data collection logistics and on missing scores in thyroid cancer patients

Susanne Singer  1   2 , Gerasimos Sykiotis  3 , Akram Al-Ibraheem  4 , Monica Pinto  5 , Ioannis Iakovou  6 , Arild Andre Østhus  7 , Eva Hammerlid  8   9 , Laura Deborah Locati  10 , Eva Maria Gamper  11 , Juan Ignacio Arraras  12 , Susan Jordan  13 , Matthias Buettner  14 , Deborah Engesser  14 , Katherine Taylor  14 , Rita Canotilho  15 , Georgios Ioannidis  16 , Olga Husson  17 , Ricardo Ribeiro Gama  18 , Giuseppe Fanetti  19 , Laura Moss  20 , Johanna Inhestern  21 , Guy Andry  22 , Harald Rimmele  23 , Naomi Kiyota  24
Affiliations
Multicenter Study

The impact of electronic versus paper-based data capture on data collection logistics and on missing scores in thyroid cancer patients

Susanne Singer et al. Endocrine. 2024 May.

Abstract

Purpose: The purpose of this study was to investigate the impact of the type of data capture on the time and help needed for collecting patient-reported outcomes as well as on the proportion of missing scores.

Methods: In a multinational prospective study, thyroid cancer patients from 17 countries completed a validated questionnaire measuring quality of life. Electronic data capture was compared to the paper-based approach using multivariate logistic regression.

Results: A total of 437 patients were included, of whom 13% used electronic data capture. The relation between data capture and time needed was modified by the emotional functioning of the patients. Those with clinical impairments in that respect needed more time to complete the questionnaire when they used electronic data capture compared to paper and pencil (ORadj 24.0; p = 0.006). This was not the case when patients had sub-threshold emotional problems (ORadj 1.9; p = 0.48). The odds of having the researcher reading the questions out (instead of the patient doing this themselves) (ORadj 0.1; p = 0.01) and of needing any help (ORadj 0.1; p = 0.01) were lower when electronic data capture was used. The proportion of missing scores was equivalent in both groups (ORadj 0.4, p = 0.42).

Conclusions: The advantages of electronic data capture, such as real-time assessment and fewer data entry errors, may come at the price of more time required for data collection when the patients have mental health problems. As this is not uncommon in thyroid cancer, researchers need to choose the type of data capture wisely for their particular research question.

Keywords: Electronic patient-reported outcomes; Help needed; Missing scores; Mode of administration; Paper–pencil; Speed.

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Conflict of interest statement

S.S. has received honoraria from Lilly for reviewing papers for their Quality of Life Award and from Eisei for advice in writing a paper, outside of the submitted work. N.K. reports honoraria from ONO PHARMACEUTICAL, Bristol Meyers Squibb, Merck Biopharma, Astra-Zeneca, Merck Sharp & Dohme, Eisai, Bayer and Chugai Pharmaceutical, all outside the submitted work. M.P. reports speaker fees from Meeting&Words and from Hinovia S.r.l., outside the submitted work. G.S. has received research support in the form of donations from Merck Sharp & Dohme, IBSA and Alpha-Sigma, which partially defrayed costs associated with recruiting patients in this study. M.B. has received speaker fees from Lilly and Takeda outside of the submitted work. All authors have a special interest in quality of life in thyroid cancer patients and survivors. The authors declare that they have no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.

Figures

Fig. 1
Fig. 1
Patient flow through the study
Fig. 2
Fig. 2
Proportion of patients needing less or more than 10 min to complete the questionnaire, by type of data capture and level of emotional problems. The figures inside the columns indicate the absolute numbers of participants within that category
See this image and copyright information in PMC

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