Background

Sweden has a long tradition of organized national population-based screening programmes. The first started in the 1960s with a pap smear test to prevent cervical cancer, followed by mammography screening for breast cancer in the 1980s and a regional screening programme (Stockholm-Gotland) with faecal testing for colorectal cancer (CRC) in 2009. The cervical cancer screening programme includes women aged 23–70 and the National Board of Health and Welfare [1] states that that all regions should provide a test for human papillomavirus (HPV) every fifth year in women from 23 years of age, and every seventh year in women from 49 years of age. In recent years, self-sampling test kits for HPV have been offered, especially due to the COVID-19 pandemic. The National Board of Health and Welfare further states that mammography should be provided to women aged 40–74, every 18^th to 24^th month [1] and they recommend CRC screening with faecal testing biannually for individuals aged 60–74 years [2]. CRC screening has previously been offered to individuals in the Stockholm—Gotland region but are now being introduced in all regions in Sweden.

Screening invitations are sent to targeted individuals by post and the national screening programmes in Sweden should be free of charge. Sweden is divided in 21 regions and each region has responsibility for the health care sector, including organising the cancer screening. The region where the individual lives, sends the invitation. The decision on whether or not to participate is made by the individual. For a cancer screening programme to be effective, a high participation rate is necessary. However, it is well known that screening programmes face challenges in obtaining a high participation rate, thereby jeopardizing the benefits of screening. In Sweden, latest figures from 2021, show an average participation rate of 71% for cervical cancer screening, 81% for breast cancer screening and 71% for CRC screening (Stockholm-Gotland) but with clear socioeconomic differences regarding participation [3]. For CRC screening, s recent follow-up study from Sweden showed that among those with a positive stool test, 91% participate in the subsequent colonoscopy [4]. A low participation rate also jeopardizes the equity of screening programmes, as it is well known that individuals with a lower socioeconomic status, ethnic minorities and individuals with various limitations participate to a lesser extent [5–9]. Racial and ethnic inequities have also been proven in a recent study from 2023 regarding oncology clinical trial participation [10]. A high participation rate is therefore crucial, not only for preventing cervical-, breast- and CRC in the population, but also for reducing inequalities related to health prevention efforts, in this case population-based screening. However, when approaching seemingly healthy individuals, it is vital to ensure their autonomy [11]. In addition to socioeconomic factors, other reported barriers, irrespective of cancer screening programme, are poor understanding and knowledge of cancer and screening [12–16]. Differences in barriers and facilitators for uptake between the programmes also relate to the screening method. For cervical cancer screening the self-sampling HPV test has been found to be highly acceptable [17] and to increase uptake [18]. In addition, the uptake increased when the faecal sampling test was changed to a more user-friendly sampling tube in CRC screening programmes [19]. In contrast, research shows that information interventions about the relatively high risk of over detection associated with mammography have a negative impact on the willingness to participate in breast cancer screening [20].

Hence, an equity perspective is crucial for the present project and in line with three of the Sustainable Development Goals (SDGs): Good health and well-being, Gender equality and Reduced inequalities. The SDGs are included in Agenda 2030, adopted by UN in 2015 and communicated by our government and authorities [21, 22]. To strengthen the equity perspective on screening it is desirable that individuals make shared decisions based on knowledge rather than ignorance, misconceptions, or fear. Therefore, the present project is based on the theoretical framework of shared decision making (SDM), with the overarching goal of improving the quality of health care decisions. SDM in this project is based on the work of Charles and Gafni [23] with three cornerstones: information/knowledge–about cancer, screening, screening tests and pros and cons; values/preferences–individuals’ attitude and behaviour when invited to screening and involvement–in the decision of both the individual and healthcare professionals.

Our previous research includes both qualitative and quantitative studies exploring how individuals’ reason about their decision whether or not to participate in CRC screening. The research was part of the Screening of Swedish Colons (SCREESCO) study (ID: NCT02078804), where individuals were randomized to colonoscopy or faecal immunochemical tests (FIT). The overall aim of SCREESCO was to investigate the effects of CRC screening on the incidence of and mortality due to CRC in Sweden [4]. Our studies found few differences between participants and non-participants. Both groups lacked knowledge about CRC and screening but had adequate health literacy (HL) and low levels of anxiety in relation to their decision [16, 24, 25]. However, the groups differed when measuring values and preferences. Non-participants had a more fatalistic approach, while participants viewed CRC screening as a way of “having control over one’s health” [16]. Regarding different screening methods, we analysed individuals’ experiences of the CRC screening procedure (colonoscopy and faecal test). The results included both positive and negative emotional reactions, a varying burden of the practical part of the screening procedure, experiences of being inconsistently informed and involved and expectations not matching the reality [26]. To further understand the need for support from healthcare professionals we analysed 2,100 of 10, 000 documented telephone calls (14%) to the SCREESCO helpline (the study provided such support for two hours every day). Unsubscribing or subscribing to screening was the most frequent reason for calling, followed by organisational issues counselling, and faecal test problems. Counselling mainly concerned abnormal faecal test results, including anxiety related to the result, followed by a need to discuss whether or not to participate in the SCREESCO study [27]. Based on our previous findings and the importance of applying an equity perspective on screening, it is desirable that individuals make an informed decision regarding participation. A suitable format to consider in the present context is a Decision Aid (DA). DAs are set to deliver information about different healthcare options and to help individuals visualize their values associated with available options [28], here screening participation. The goal of the present project is therefore to support individuals in their decision-making process by the development of a digital individual decision aid (iDA). Implementation is planned in all national population-based cancer screening programmes in Sweden, starting with CRC and followed by breast and cervical cancer.

The International Patient Decision Aid Standards (IPDAS) [29] consists of quality criteria which are important to consider when developing DAs [30, 31]. The planned digital iDA will be accessible online with various content and directed towards individuals invited to cancer screening, in order to support shared decision-making. The advantage of an iDA is that individuals gain knowledge about cancer and screening by accessing one webpage with a possibility to communicate with health professionals for advice and support, instead of searching the internet by themselves. Existing evidence shows that people using DAs in connection with a treatment or screening decision increase their knowledge and feel more involved and certain of what matters most to them, i.e. their values [28, 32]. DAs can also be cost-effective, as shown by a decision-analytic model [33]. Nevertheless, DAs are not intended to guide individuals to choose one option over another.

To date, no iDA for any of the screening programmes exists in Sweden. At the same time, the individual is expected to make the decision on whether or not to participate in screening alone which is why this project is warranted. By designing the communication strategies in various ways regarding information about screening options and helping individuals construct, clarify and communicate personal values, our intention is to support the decision-making process and address and acknowledge the equity perspective, by making the effort to approach individuals considered vulnerable and belonging to minority groups in the society. Therefore, the aim is to develop, implement and evaluate a digital individual Decision Aid for people invited to cancer screening in Sweden.

Methods

Design

This study encompasses a process, implementation and outcome evaluation. Multiple methods will be used including self-reported questionnaire data, focus group discussions and individual interviews. The project is divided into two phases: Phase 1 consists of the process and initial implementation and Phase 2: the outcome evaluation. The two phases are presented below, please also see the Schedule of enrollment (Fig 1). The work and outline of this paper is inspired by similar research on development of digital decision aids in both Sweden and the Netherlands [34–36].

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Fig 1. SPIRIT schedule of enrollment.

https://doi.org/10.1371/journal.pone.0294332.g001

Discussion

The aim of the present project is to develop and implement a digital iDA for individuals invited to cancer screening in Sweden. The iDA is intended to contribute so that individuals invited to screening base their decision on knowledge and with a clear picture of their values and preferences, rather than ignorance, misconceptions, or fear. Furthermore, the iDA is expected to increase knowledge and raise general awareness about cancer and cancer screening.

To the best of our knowledge the present study is the first attempt aimed at developing such an iDA for use in a Swedish screening context, although similar projects, such as applying a family-based multimedia intervention in relation to CRC screening, have been undertaken elsewhere [45]. Another, recently published study presented 23 conclusions formulated and voted on by participants taking part in a public deliberation regarding the design and evaluation of a DA focusing on CRC screening [37]. Conclusions included the Usage of a DA, the Content (encouraging screening, supporting informed decision making), (complexity and tailoring), (quantitative information), and Trustworthiness. These 23 conclusions can serve as a reminder for us during the developmental process, together with the following statements made by participants: keep DAs short and simple, support participants’ engagement and understanding and tailor DAs to each individual user.

Applying the IPDAS quality criteria as a basis [29, 31] and including the model development process for DAs [30] are considered a strength, contributing to the proper development of the DA. The criteria are well-known, thoroughly developed [30, 31] and previously used in similar settings and for similar purposes [35]. Further advantages are the inclusion of a gender and diversity perspective and the mapping onto the SDGs Good health and well-being, Gender equality and Reduced inequalities, all included in Agenda 2030 [22]. Approaching individuals who normally do not participate in cancer screening, or research in general, for that matter, will hopefully contribute to a successful design and development process with the intention of making the iDA inclusive and accessible for as many as possible. This, regardless of any physical or mental limitation or ethnic background. The iDA is considered to be an informative and interactive tool and since it will be digital, the behaviour flow can be studied, meaning that instant adaptions and modifications of content and structure can be performed continuously. The goal is to have more individuals making autonomous and informed decisions, regarding cancer screening participation, and in line with their values and preferences. The Swedish national screening programmes are directed towards three common diseases, preventable and treatable through preventive efforts, and where a decision aid is well-suited. It is desired that individuals make an informed decision on knowledge rather than ignorance, misconceptions, or fear. Therefore, the present project is performed in close collaboration with stakeholders, experts and end-users. The latter including individuals with diverse ethnic backgrounds and limitations, a composition rare in research, nevertheless of importance from an equity perspective.

Nevertheless, the project still faces a couple of challenges. Firstly, the recruitment of lay persons for the developmental process might be difficult. It is common knowledge these days that recruiting people for research purposes is challenging. We will try to resolve this issue by advertising in social media and local newspapers in different parts of Sweden. However, we believe that people will find it rewarding to take part in this project by contributing with their opinions and thoughts. A small incentive will be offered to each individual (two cinema tickets).

Secondly, internet access in Sweden is generally good and the vast majority, regardless of age, use and search for information on the internet on a regular basis. However, it will be a challenge to reach out to those who do not use the internet and/or without a permanent residence. In order to address this challenge we will approach NGOs and charity organizations in addition to applying the snowball method [44]. Furthermore, the iDA will initially be paper based during the design phase, thus the challenge of internet access will only emerge later in the process by which time it will hopefully be solved by the provision of internet access by the specific NGO or charity organization.

Supporting information