How do we explain painful non-traumatic knee conditions to adolescents? A multiple-methods study

Key points

1. 01Adolescents with chronic knee pain often feel stigmatized, confused by diagnostic labels, and worried that something serious has been missed
2. 02Perceived diagnostic uncertainty can increase anxiety, pain catastrophizing, and fear, and may reduce acceptance of self-management advice
3. 03Expert consensus highlighted four themes for credible explanations: multidimensional perspective, tailoring to adolescents, validation and reassurance, and careful wording
4. 04Think-aloud testing with adolescents (n=7) found that medical jargon and long sentences were the main barriers to understanding, and most problems were resolved after the first testing session
5. 05The six resulting explanations are a framework for clinicians, not a one-size-fits-all checklist, and their clinical effectiveness has not yet been tested

How it was conducted

Design

Multiple-method study combining systematic literature searches, Argumentative Delphi with international experts, and think-aloud user testing with adolescents

Systematic search

Two MEDLINE searches (March 2022): one on adolescents' information needs for chronic musculoskeletal pain (16 qualitative papers included from 3,239 screened), one on etiology of non-traumatic knee pain (64 papers included from 2,934 screened)

Delphi participants

16 international experts (physiotherapists n=9, medical doctors n=5, psychologist n=1, academic researcher n=1) from 7 countries; 2 rounds conducted April-June 2022

User testing

Think-aloud exercises with 7 adolescents aged 8-15 years (2 with current knee pain) in two iterative sessions

Conditions covered

Growth pain, Iliotibial Band Syndrome, Osgood-Schlatter, Patellar Tendinopathy, Patellofemoral Pain, and Sinding-Larssen-Johansson

What they found

• Systematic search one yielded 3,239 papers; 16 were included and produced 5 themes: understanding causes and contributors to pain, feeling stigmatized for an invisible condition, having a name for pain, controllability of pain, and worry about something being missed
• Systematic search two yielded 2,934 papers; 64 were included describing etiology and pathogenesis of non-traumatic knee pain
• Delphi Round One: 18 of 32 enrolled experts responded; Round Two: 16 responded (89% response rate)
• Expert ratings improved between rounds: 7 of 18 experts rated the explanations as 'agree' or 'strongly agree' in Round One, rising to 13 of 16 in Round Two
• Think-aloud sessions: interview duration ranged 18-45 minutes (mean 29 min); most comprehension problems were identified and resolved in Session One; Session Two showed greatly reduced comprehension problems and required little to no extra mental effort
• Three key domains were identified: 'What is (diagnosis) and what does it mean?', 'What is causing my knee pain?', and 'How do I manage my knee pain?'

Limitations

• Only one database (MEDLINE) was used for systematic searches, so relevant papers may have been missed
• The majority of Delphi experts were physiotherapists (n=9 of 16), which may bias findings toward that profession's views
• Only one of the six credible explanations was tested in think-aloud exercises with adolescents
• Only two of seven think-aloud participants had current knee pain, potentially missing important perspectives from those most affected

Why it matters

For patients

Adolescents with knee pain often leave consultations confused and worried; these explanations are designed to give a clear, reassuring, and age-appropriate account of what their diagnosis means and what they can do about it.

For clinicians

Clinicians can use the three-domain framework (what it is, why it hurts, how to manage it) as a guide for structuring patient education conversations, with language tailored to the individual adolescent's developmental level.

For readers

This study shows that developing effective patient education materials requires input from patients, experts, and end-users together, and that even well-designed materials need iterative testing with the target age group before clinical use.