WHAT DO PATIENTS WANT AND NEED IN AN EXPLANATION ABOUT OSTEOARTHRITIS?
Problem
Osteoarthritis (OA) is a major cause of pain and disability worldwide. Patients and health care professionals (HCPs) often lack clarity about the nature of OA and effective treatment strategies. Osteoarthritis explanations are often inaccurate, simplistic, and mainly focused on biomedical terms, highlighting ‘damage’, ‘degeneration’ and ‘wear and tear’. Patients hold negative beliefs about osteoarthritis and may doubt whether they can improve their symptoms. Terminology used to describe OA and its typical, movement related symptoms, can cause people to worry about causing harm by exercising. Furthermore, health information in general is too complex. This study aimed to develop a new explanation for osteoarthritis to help people understand the condition and make sense of management approaches, taking account of health literacy.
Approach
1980 people registered at four general practices were mailed a conjoint survey (aged ≥45 years, recorded OA consultation in previous two years). The survey included eight pairs of potential OA explanation statements. Participants selected the explanation that would most help them to self-manage their OA. The OA explanations were designed using a partial-profile choice-based conjoint analysis (profile strength 4, comparison depth 3) from a set of 11 theoretically informed key attributes. Each decision task contained two statements: one representing current information sources, and one a newly designed statement (co-designed with patients and stakeholders). A Patient Advisory Group (PAG) met three times to translate findings into a story board for a new animation, discuss leaflet content and a brief evaluation e-survey to obtain feedback from the public, people with OA, carers and HCPs (e-survey link embedded in animation and leaflet).
Findings
Survey response was 22% (428/1980) (typical for survey type) (average age = 65 years (SD= 10); 66% female). Newer statements were preferred to existing statements for 10 of 11 statements (8 differences statistically significant (p < 0.05)). Sensitivity analyses did not change the findings. The PAG preferred a “cartoon” to whiteboard animation, depicting a journey, patients progressing, taking control, living fulfilling lives, achieving goals (positive and hopeful). They advised to avoid red flames/circles denoting pain, text focusing on “no cure”, and humorous images. Headings discussed included e.g.: What is Osteoarthritis? What Causes it? How should I start increasing activity and what should I expect? Tested statements were grouped under headings and further assessed using Flesch reading ease and literacy level. The YouTube link to the animation is https://youtu.be/6iz78WMm-Lo
Consequences
Updated 2022 UK NICE OA guidelines recommend HCPs advise people where they can find further information on osteoarthritis, how it develops, and that challenges common misconceptions about the condition. Using best health literacy practice, we have developed inclusive resources which aim to empower patients and carers to self-manage OA and sufficiently inform them to help shared decision making about their health.