Development, Implementation and Evaluation of an Individual Decision Aid in Swedish Cancer Screening Programs

Summary

Background: Sweden has a long tradition of organized national population-based screening programs. Participation rates differ between programs and regions, are relatively high in some groups, but lower in other. To apply an equity perspective on screening, it is desired that individuals make an informed decision on knowledge rather than ignorance, misconceptions, or fear. Decision Aids (DAs) are set to deliver information about different health care options and to help individuals make visible values connected to the options available. DAs are not meant to guide individuals to choose one option over the another. The advantage of an individual Decision Aid (iDA) is that individuals gain knowledge on cancer and screening entering one webpage with possibility to communicate with health professionals and thereafter make their decision regarding participate. The primary objective is therefore to develop and implement a web-based iDA for individuals invited to cancer screening in Sweden. The secondary objective is to evaluate the implemented web-based iDA.

Methods: This study has an evaluative approach with both a process-, an implementation and an outcome evaluation. Multiple methods will be used including patient reported data, focus group discussions and individual interviews using the think aloud technique. The project is based on the framework from The International Patient Decision Aid Standards (IPDAS) and the proposed model development process for DAs as presented by Coulter et al. Individuals aged 23-74, including women aged (the cervical- and breast- and bowel cancer screening module) and men aged (the bowel cancer screening module), will be included in the developmental process. Efforts will be made to recruit participants with disabilities, who live outside society and who are foreign born.

Discussion: To the best of our knowledge the present study is the first aiming at developing an iDA for usage in Swedish context, 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 awareness in general about cancer and cancer screening in society.

Conditions

• Neoplasm, Colorectal
• Neoplasm, Breast
• Neoplasm, Ovarian

Interventions

DEVICE

Individual decision aid (iDA)

A web-based iDA (accessible online with various content), will be developed towards individuals approached to cancer screening, although public and accessible to all who are interested in cancer and screening. DAs in screening usually include information on the disease, screening, screening tests, benefits and harms and some value clarification exercise (e.g., interactive questions) aiming at shedding light on the individual´s values and preferences, knowledge and lifestyle.

Sponsors & Collaborators

• Jonkoping University

  collaborator OTHER

• Malmö University

  collaborator OTHER

• Umeå University

  collaborator OTHER

• Leiden University

  collaborator OTHER

• Dalarna University

  collaborator OTHER

• Karolinska University Hospital

  collaborator OTHER

• Karolinska Institutet

  lead OTHER

Principal Investigators

• Kaisa Fritzell, PhD · Karolinska Institutet

Study Design

Allocation

NA

Purpose

SCREENING

Masking

NONE

Model

SINGLE_GROUP

Eligibility

Min Age

23 Years

Max Age

74 Years

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2023-03-01

Primary Completion

2025-09-30

Completion

2025-10-31

Countries

• Sweden

Study Locations