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Questionnaire Development for the Lolland-Falster Health Study, Denmark: an Iterative and Incremental Process

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Questionnaire Development for the Lolland-Falster Health Study, Denmark: an Iterative and Incremental Process University of Southern Denmark Questionnaire development for the Lolland-Falster Health Study, Denmark: an iterative and incremental process Egholm, Cecilie Lindström; Packness, Aake; Stokholm, Jakob; Rasmussen, Knud; Ellervik, Christina; Simonsen, Erik ; Christensen, Anne Illemann; Jepsen, Randi Published in: B M C Medical Research Methodology DOI: 10.1186/s12874-020-00931-1 Publication date: 2020 Document version: Final published version Document license: CC BY Citation for pulished version (APA): Egholm, C. L., Packness, A., Stokholm, J., Rasmussen, K., Ellervik, C., Simonsen, E., Christensen, A. I., & Jepsen, R. (2020). Questionnaire development for the Lolland-Falster Health Study, Denmark: an iterative and incremental process. B M C Medical Research Methodology, 20, [52]. https://doi.org/10.1186/s12874-020- 00931-1 Go to publication entry in University of Southern Denmark's Research Portal Terms of use This work is brought to you by the University of Southern Denmark. Unless otherwise specified it has been shared according to the terms for self-archiving. If no other license is stated, these terms apply: • You may download this work for personal use only. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying this open access version If you believe that this document breaches copyright please contact us providing details and we will investigate your claim. Please direct all enquiries to [email protected] Download date: 28. Sep. 2021 Egholm et al. BMC Medical Research Methodology (2020) 20:52 https://doi.org/10.1186/s12874-020-00931-1 COMMENTARY Open Access Questionnaire development for the Lolland-Falster Health Study, Denmark: an iterative and incremental process Cecilie Lindström Egholm1,2, Aake Packness3,4, Jakob Stokholm5,6, Knud Rasmussen2, Christina Ellervik2,7,8, Erik Simonsen3,8, Anne Illemann Christensen9 and Randi Jepsen1* Abstract In composing multi-thematic questionnaires for the Lolland-Falster Health Study (LOFUS), we faced a range of challenges, for which we found limited guidance in the literature. LOFUS is a household-based population study covering multiple medical and social research areas and targeting the mixed rural-provincial population of 103,000 persons on the Danish islands Lolland and Falster. Households were randomly selected for invitation. In this paper, we describe and discuss challenges in developing the questionnaires related to stakeholders, content of the questionnaire, and the process itself. The development process was characterised by loops of learning and can be described as an iterative and incremental process. We propose recommendations to researchers and administrators involved in similar development processes, including awareness of the non-linearity and complexity of the process, a need for negotiations and navigation among multiple stakeholders, and acknowledgement of pragmatism as an inherent part of decisions made in the process. Keywords: LOFUS, Lolland-Falster Health study, Population study, Questionnaires, Iterative and incremental process, Questionnaire development, Items, Scales, Loops of learning Background such as content, resources, stakeholders, and practical Many population studies use self-administered question- matters; issues for which we found limited guidance in naires for collection of data on socio-economic status, the literature. lifestyle, medical history, symptoms, quality of life, etc. In this paper, we report lessons learned from our ques- These data are used for analysis of baseline associations tionnaire development for the Lolland-Falster Health between risk factors and reported health, and they are Study (LOFUS), Denmark, which included participants used for exposure classification of study participants in from households and of all ages, combined multiple follow-up studies of health outcomes [1–4]. medical and social research areas, and had several stake- Questionnaire development for such studies seem as a holders [9]. The objective is to present and discuss the straightforward task of compiling relevant and well- challenges, considerations, and trade-offs in the develop- designed items or scales. However, the process may be ment process. Our experiences may help researchers in considerably more challenging [5]. Methodological ad- development of composite questionnaires for new popu- vice is available on how to phrase and validate single lation studies. items and scales and how to design and administer a The paper is based on minutes of meeting, email cor- questionnaire [6–8]. Still, in composing a multi-thematic respondences, notes, and process documentation made questionnaire for the general population, we faced a by the first author (CLE), who was a member of the range of challenges related to the development process questionnaire-working group from start to finish. She drafted a thematic overview of the notes, which subse- * Correspondence: [email protected] quently was discussed and organised as table and text by 1Lolland-Falster Health Study, Centre for Epidemiological Research, Nykøbing CLE, AP (researcher involved in a subproject), and RJ Falster Hospital, Fjordvej 15, 4800 Nykøbing F, Denmark (member of the questionnaire-working group and Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Egholm et al. BMC Medical Research Methodology (2020) 20:52 Page 2 of 7 project manager for LOFUS). The remaining authors, who feasibility, and expected burden on participants. Fifteen were also part of the questionnaire development process subprojects were accepted, representing a broad as questionnaire-working group member, steering group spectrum of disciplines and data collection requests, all member, principal investigator (PI), or external expert had of them including questionnaire data [9]. The PIs re- roles as critical peers in the writing process. sponsible for the subprojects signed a collaboration agreement and paid a fee. An exclusive right to use data Lolland-Falster Health study (LOFUS) collected for a particular subproject was granted for 3 LOFUS is a household-based population study, under- years, after which data would be available for other re- taken in the mixed rural-provincial population of 103, searchers upon application to the steering committee. 000 persons on the Danish islands Lolland and Falster A questionnaire-working group was formed to work aimed to form a cohort for later follow-up [9]. Data col- specifically with the scientific, administrative, and prac- lection started in February 2016 and continued through tical aspects of developing questionnaires for the study. February 2020, achieving 19,000 participants. The formal decision-making authority rested with the The aim of LOFUS was to create a research platform, steering committee. Below, we describe and discuss the including a comprehensive database and a biobank, to questionnaire development process. investigate risk factors for diseases including socio- economic, hereditary, lifestyle, familial, social, and envir- Questionnaire development – an iterative process onmental exposures on the individual, family, and Although the task of compiling a composite question- household basis [9]. Randomly selected adult persons naire for the LOFUS study initially seemed rather (≥18 years) from Lolland-Falster and their entire house- straightforward, it soon emerged a highly complex task, holds were invited. Household members were of all ages, where neither the final result nor the process itself were and they could participate together or independently. clearly defined in advance. In hindsight, the question- Besides questionnaires, health examinations were per- naire development can be described as an iterative and formed, and biological samples were collected [9]. incremental process. Iterative and incremental develop- LOFUS is owned by Region Zealand and administered ment has been applied for decades e.g. in software de- by Nykøbing Falster Hospital. Region Zealand, Nykøbing sign [15]. Characterized by starting with an idea rather Falster Hospital, and Guldborgsund and Lolland munici- than a clearly defined final solution, development occurs palities financed the project. In addition, researchers in- through loops of learning with constant revisions of re- terested in collection/use of specific parts of the data quests and solutions. The evolving product is continu- contributed financially to the budget. The project is gov- ously tested and evaluated, until a satisfactory product is erned by a steering committee including representatives in place. Once there, it moves out of the iterative loops from the financing organisations, researchers with uni- to implementation [15]. versity affiliations, and administrators [9]. In LOFUS, our starting point was a broadly defined re- Lolland-Falster has a deprivation score of 44% above search aim [9] and the
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