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 Sykiotis³, Akram Al-Ibraheem⁴, Monica Pinto⁵, Ioannis Iakovou⁶, Arild Andre Østhus⁷, Eva Hammerlid^{8

9}, Laura Deborah Locati¹⁰, Eva Maria Gamper¹¹, Juan Ignacio Arraras¹², Susan Jordan¹³, Matthias Buettner¹⁴, Deborah Engesser¹⁴, Katherine Taylor¹⁴, Rita Canotilho¹⁵, Georgios Ioannidis¹⁶, Olga Husson¹⁷, Ricardo Ribeiro Gama¹⁸, Giuseppe Fanetti¹⁹, Laura Moss²⁰, Johanna Inhestern²¹, Guy Andry²², Harald Rimmele²³, Naomi Kiyota²⁴

Affiliations

¹ Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre Mainz, Mainz, Germany. susanne.singer@uni-mainz.de.
² University Cancer Centre, Mainz, Germany. susanne.singer@uni-mainz.de.
³ Service of Endocrinology, Diabetology and Metabolism, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
⁴ Department of Nuclear Medicine, King Hussein Cancer Center, Amman, Jordan.
⁵ Rehabilitation Medicine Unit, Strategic Health Services Department, Istituto Nazionale Tumori - IRCCS - Fondazione G. Pascale, Naples, Italy.
⁶ Department of Nuclear Medicine, Aristotle University, Thessaloniki, Greece.
⁷ ENT and Head and Neck Department, University Medical Centre Oslo, Oslo, Norway.
⁸ Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
⁹ Department of Otorhinolaryngology-Head and Neck Surgery, Sahlgrenska University Hospital, Gothenburg, Sweden.
¹⁰ Head and Neck Medical Oncology Unit, Fondazione IRCCS istituto Nazionale dei Tumori, Milan, Italy.
¹¹ Department of Nuclear Medicine and Department of Psychiatry, Psychotherapy and Psychosomatic Medicine, University Hospital Psychiatry II, Medical University of Innsbruck, Innsbruck, Austria.
¹² Oncology Departments, Complejo Hospitalario de Navarra, Pamplona, Spain.
¹³ School of Public Health, The University of Queensland, Brisbane, QLD, Australia.
¹⁴ Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre Mainz, Mainz, Germany.
¹⁵ Instituto Português do Oncologia do Porto Francisco Gentil, Porto, Portugal.
¹⁶ Oncology Department, Nicosia General Hospital, Nicosia, Cyprus.
¹⁷ Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
¹⁸ Head and Neck Surgery Department, Barretos Cancer Hospital, Barretos, Brazil.
¹⁹ Division of Radiotherapy, Centro di Riferimento Oncologico di Aviano (CRO) IRCCS, Aviano, PN, Italy.
²⁰ Velindre Cancer Centre, Velindre University NHS Trust, Cardiff, UK.
²¹ Department of Otorhinolaryngology, Oberhavelkliniken, Hennigsdorf, Germany.
²² Surgery Department, Jules Bordet Institute, Brussels, Belgium.
²³ Bundesverband Schilddrüsenkrebs - Ohne Schilddrüse leben e. V., Berlin, Germany.
²⁴ Department of Medical Oncology and Hematology, Cancer Center, Kobe University Hospital, Kobe, Japan.

PMID: 38103143
PMCID: PMC11076317
DOI: 10.1007/s12020-023-03628-9

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.

. 2024 May;84(2):635-645.

doi: 10.1007/s12020-023-03628-9. Epub 2023 Dec 16.

Authors

Affiliations

¹ Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre Mainz, Mainz, Germany. susanne.singer@uni-mainz.de.
² University Cancer Centre, Mainz, Germany. susanne.singer@uni-mainz.de.
³ Service of Endocrinology, Diabetology and Metabolism, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
⁴ Department of Nuclear Medicine, King Hussein Cancer Center, Amman, Jordan.
⁵ Rehabilitation Medicine Unit, Strategic Health Services Department, Istituto Nazionale Tumori - IRCCS - Fondazione G. Pascale, Naples, Italy.
⁶ Department of Nuclear Medicine, Aristotle University, Thessaloniki, Greece.
⁷ ENT and Head and Neck Department, University Medical Centre Oslo, Oslo, Norway.
⁸ Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
⁹ Department of Otorhinolaryngology-Head and Neck Surgery, Sahlgrenska University Hospital, Gothenburg, Sweden.
¹⁰ Head and Neck Medical Oncology Unit, Fondazione IRCCS istituto Nazionale dei Tumori, Milan, Italy.
¹¹ Department of Nuclear Medicine and Department of Psychiatry, Psychotherapy and Psychosomatic Medicine, University Hospital Psychiatry II, Medical University of Innsbruck, Innsbruck, Austria.
¹² Oncology Departments, Complejo Hospitalario de Navarra, Pamplona, Spain.
¹³ School of Public Health, The University of Queensland, Brisbane, QLD, Australia.
¹⁴ Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), University Medical Centre Mainz, Mainz, Germany.
¹⁵ Instituto Português do Oncologia do Porto Francisco Gentil, Porto, Portugal.
¹⁶ Oncology Department, Nicosia General Hospital, Nicosia, Cyprus.
¹⁷ Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
¹⁸ Head and Neck Surgery Department, Barretos Cancer Hospital, Barretos, Brazil.
¹⁹ Division of Radiotherapy, Centro di Riferimento Oncologico di Aviano (CRO) IRCCS, Aviano, PN, Italy.
²⁰ Velindre Cancer Centre, Velindre University NHS Trust, Cardiff, UK.
²¹ Department of Otorhinolaryngology, Oberhavelkliniken, Hennigsdorf, Germany.
²² Surgery Department, Jules Bordet Institute, Brussels, Belgium.
²³ Bundesverband Schilddrüsenkrebs - Ohne Schilddrüse leben e. V., Berlin, Germany.
²⁴ Department of Medical Oncology and Hematology, Cancer Center, Kobe University Hospital, Kobe, Japan.

PMID: 38103143
PMCID: PMC11076317
DOI: 10.1007/s12020-023-03628-9

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 (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.

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**
Patient flow through the study

**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

References

1. Ishiki H, Kikawa Y, Terada M, Mizusawa J, Honda M, Iwatani T, Mizutani T, Mori K, Nakamura N, Miyaji T, et al. Patient-reported outcome and quality of life research policy: Japan Clinical Oncology Group (JCOG) policy. Jpn. J. Clin. Oncol. 2023;53:195–202. doi: 10.1093/jjco/hyad007. - DOI - PMC - PubMed
1. Velikova G, Coens C, Efficace F, Greimel E, Groenvold M, Johnson C, Singer S, van de Poll-Franse L, Young T, Bottomley A. Health-related quality of life in EORTC clinical trials – 30 years of progress from methodological developments to making a real impact on oncology practice. Eur. J. Cancer Suppl. 2012;10:141–149. doi: 10.1016/S1359-6349(12)70023-X. - DOI
1. Dionisi-Vici M, Fantoni M, Botto R, Nervo A, Felicetti F, Rossetto R, Gallo M, Arvat E, Torta R, Leombruni P. Distress, anxiety, depression and unmet needs in thyroid cancer survivors: a longitudinal study. Endocrine. 2021;74:603–610. doi: 10.1007/s12020-021-02786-y. - DOI - PMC - PubMed
1. Abernethy AP, Ahmad A, Zafar SY, Wheeler JL, Reese JB, Lyerly HK. Electronic patient-reported data capture as a foundation of rapid learning cancer care. Med. Care. 2010;48:S32–S38. doi: 10.1097/MLR.0b013e3181db53a4. - DOI - PubMed
1. Cramon P, Rasmussen AK, Bonnema SJ, Bjorner JB, Feldt-Rasmussen U, Groenvold M, Hegedus L, Watt T. Development and implementation of PROgmatic: A clinical trial management system for pragmatic multi-centre trials, optimised for electronic data capture and patient-reported outcomes. Clin. Trials. 2014;11:344–354. doi: 10.1177/1740774513517778. - DOI - PubMed

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Research Materials