Objectives To identify common pain descriptors used by people with physical disability-related pain and to suggest words that are likely to prompt responses in clinical interviews and assessments. Design Open-ended interviews were coded and then contrasted with responses to a pain questionnaire, obtained through mail or interview surveys. Setting Rehabilitation research program. Participants Twenty-eight people with physical disability-related pain in a series (n=54) of in-depth interviews and 1053 participants with disabilities who responded to mailed questionnaires or structured interviews about pain and its impact (459 with acquired lower-limb amputation, 471 with spinal cord injury, 123 with cerebral palsy). Interventions Not applicable. Main outcome measures Pain interview descriptions and McGill Pain Questionnaire (MPQ). Results Different pain experiences were reflected in narrative descriptions and self-report questionnaire responses. We report the common terms, but across diagnoses use of terms does not appear to clearly differentiate distinct pain phenomenon. Narrative interviews support the use of several MPQ pain descriptors. However, discrete descriptors are recommended when assessing adults with physical disability. Conclusions We identified pain descriptors that appear to be most useful in assessing daily life and participation experiences with physical disability-related pain. These may be clinically useful, but caution is advised when doing diagnostic workups based solely on sensory and affective pain descriptions.
- Chronic disease
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