Co-design and user-testing a health literacy friendly decision aid for patients with sciatica

Background: For many patients with sciatica, the decision of whether to have surgery or not is a difficult one. Surgery can result in faster recovery but by 12 months outcomes are similar to non-surgical management. This study aimed to co-design a decision aid for patients with sciatica who are deciding whether to have surgery or ‘wait and see’ (i.e. try non-surgical management first), and to refine the prototype through user-testing.
Methods: A prototype was developed across several workshops with patients and clinicians and integrated decision aid and health literacy guidelines (e.g. Grade reading score of 9.0). The design was then iteratively refined across seven rounds of user-testing interviews with 20 clinicians and 20 patients. Clinicians completed items from the Technology Acceptance Model. Patients completed the Preparation for Decision Making Scale and the Decision Quality Instrument for Herniated Disc 2.0 (knowledge instrument).
Findings: Clinicians rated the resource 5.9/7 (SD=1.0) for perceived usefulness, and 6.0/7 for perceived ease of use (SD=0.8). Clinician acceptability was enhanced by addressing feedback that the term ‘wait and see’ felt passive and adding more detail about the underlying evidence. Patients reported the decision aid was easy to understand, on average correctly answering 3.4 out of 5 knowledge questions (SD=1.2). A single-page summary was added to enhance understanding. Patients scored highly on preparation for decision-making (4.4 out of 5, SD=0.7) suggesting strong potential to empower patients. Interview feedback showed patients and clinicians felt the decision aid would encourage question-asking and its novel interactive values clarification task could help patients reflect on personal values.
Discussion: Clinicians and patients felt the patient decision aid would empower patients to actively engage in their care and come to an informed decision that aligned with personal values. Co-design and user-testing were both crucial for ensuring that the decision aid met user needs.