Journal Article

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

Rita Canotilho, Eva Maria Gamper, Olga Husson, Harald Rimmele, Ioannis Iakovou, Katherine Taylor, Laura Moss, Naomi Kiyota, Susan Jordan, Ricardo Ribeiro Gama, Matthias Buettner, Johanna Inhestern, Akram Al-Ibraheem, Juan Ignacio Arraras, Guy Andry, Arild Andre Østhus, Gerasimos Sykiotis, Susanne Singer, Monica Pinto, Eva Hammerlid, Georgios Ioannidis, Giuseppe Fanetti, Deborah Engesser, Laura Deborah Locati

2024

Overview

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 (OR adj 24.0; p  = 0.006). This was not the case when patients had sub-threshold emotional problems (OR adj 1.9; p  = 0.48). The odds of having the researcher reading the questions out (instead of the patient doing this themselves) (OR adj 0.1; p  = 0.01) and of needing any help (OR adj 0.1; p  = 0.01) were lower when electronic data capture was used. The proportion of missing scores was equivalent in both groups (OR adj 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.

• Publisher: Springer Science and Business Media LLC,Springer US,Springer Nature B.V
• Subject: Adult / Aged / Cancer / Cancer and Oncology / Cancer och onkologi / Comorbidity / Data capture / Data collection / Data Collection - methods / Diabetes / Emotions / Endocrinology / Female / Health problems / Humanities and Social Sciences / Humans / Humans; Thyroid Neoplasms/psychology; Female; Male; Middle Aged; Adult; Aged; Quality of Life; Prospective Studies; Surveys and Questionnaires; Patient Reported Outcome Measures; Data Collection/methods; Electronic patient-reported outcomes; Help needed; Missing scores; Mode of administration; Paper–pencil; Speed / Internal Medicine / Logistics / Male / Medicine / Medicine & Public Health / Mental disorders / Middle Aged / Missing data / multidisciplinary / Original Paper / Oto-rhino-laryngologi / Oto-rhino-laryngology / Patient Reported Outcome Measures / Patients / Prospective Studies / Quality of Life / Questionnaires / Real time / Science / Surveys and Questionnaires / Thyroid / Thyroid cancer / Thyroid Neoplasms - psychology