What do patients want and need from an osteoarthritis explanation?
Problem
Osteoarthritis is a major cause of disability worldwide, but healthcare professionals often do not have the right words to help patients understand the condition. Patients can feel that their condition is being trivialised or can develop negative beliefs about osteoarthritis as a result. Self-management strategies, such as exercise and weight loss (if needed), are core, but commonly underused, management approaches. Within a mixed-methods project, we are developing a patient explanation package for osteoarthritis (PEP-OA) to help patients’ understanding of their condition and make sense of suggested management approaches. This abstract reports findings from the first work-package, to establish what patients want and need to know about osteoarthritis, and to identify appropriate language, to support self-management.
Approach
First a mixed expert stakeholder group (health professionals, researchers and patients) was convened to discuss initial development of candidate explanation statements. Informed by theory, existing osteoarthritis statements were divided into topics within 11 sets and were discussed in terms of completeness, accuracy and preferred wording. After the meeting 6 stakeholders red-amber-green (RAG) rated each topic (red: no clear link to supporting self-management, green: clearly linked to self-management). Topics unanimously RAG-rated red were removed. Remaining topics were discussed by a separate patient advisory group (PAG, n=6) for further feedback, exclusion and refinement. Using feedback, the topics were developed into statements to be prioritised within a two-round nominal group technique (NGT), consensus was defined as 80% agreement among participants. If no consensus was achieved, prioritised statements were identified by applying a numerical weighting to ranking.
Findings
Ten people attended the stakeholder group. The word ‘degeneration’ was rejected and PAG members rejected ‘wear and tear’, ‘loss’, ‘not inflammatory arthritis/osteoporosis’, ‘normal’ and technical descriptions involving changes in joint anatomy. The words ‘condition’ or ‘disorder’ and ‘movement’ or ‘activity’ were preferred over ‘disease’ and ‘exercise’ respectively. Both groups conceptualised osteoarthritis as: not inevitably progressive; modifiable, and being variable between people, joints and over time. NGT participants (n=5) prioritised myth-busting statements and opposed being told what they already know (e.g. osteoarthritis causes pain). Throughout, patients and stakeholders liked positive statements portraying hope and the benefits of simple self-management strategies.
Consequences
These findings outline what patients want and need to know to understand osteoarthritis and its core management. Stakeholders preferred simple explanations which conceptualise osteoarthritis as a manageable and/or modifiable long-term condition. A conjoint analysis survey will now identify patients' preferences for the statements that are most helpful for self-management, before a core patient explanation of osteoarthritis for use in consultations is finalised.