How do we explain painful non-traumatic knee conditions to adolescents? A multiple-method study to develop credible explanations.

Background: Perceived diagnostic uncertainty can leave adolescents confused about their condition and impede their ability to understand “what’s wrong with me”. Our aim is to develop credible explanations about the condition for adolescents suffering from non-traumatic knee pain.

Methods: This multiple-method study integrated findings from two systematic literature searches of qualitative and quantitative studies, an Argumentative Delphi with international experts (n=16) and think-aloud interviews with adolescents (n=16). Experts provided feedback with arguments on how to communicate credible explanations to meet adolescents’ needs; we analyzed feedback using thematic analysis. The explanations were tailored based on the adolescent end-users’ input.

Results: We screened 3239 titles/abstracts and included 16 papers exploring diagnostic uncertainty from adolescents’ and parents’ perspectives. Five themes were generated: (1) Understanding causes and contributors to the pain experience, (2) Feeling stigmatized for having an invisible condition, (3) Having a name for pain, (4) Controllability of pain, and (5) Worried about something being missed. The Argumentative Delphi identified the following themes: (1) Multidimensional perspective, (2) Tailored to adolescents, (3) Validation and reassurance, and (4) Careful wording. Merging findings from the systematic search and the Delphi developed three essential domains to address in credible explanations: “What is non-traumatic knee pain and what does it mean?”, “What is causing my knee pain?” and “How do I manage my knee pain?”.

Conclusions: Six credible explanations for the six most common diagnoses of non-traumatic knee pain were developed. We identified three domains to consider when tailoring credible explanations to adolescents experiencing non-traumatic knee pain.