Pain Experience and Expression in Rett Syndrome: Subjective and Objective Measurement Approaches

This study investigated pain experience and expression using multiple complementary subjective and objective approaches among a clinical RTT sample. Following informed consent, 18 participants (all female) with RTT (mean age = 12.8 years, SD = 6.32) were characterized in terms of pain experience and interference, typical pain expression, and elicited pain behavior during a passive range of motion-like examination procedure. Parents completed the Dalhousie Pain Interview (DPI; pain type, frequency, duration, intensity), the Brief Pain Inventory (BPI; pain interference), and the Non-Communicating Children’s Pain Checklist – Revised (NCCPC-R; typical pain expression). A Pain Examination Procedure (PEP) was conducted and scored using the Pain and Discomfort Scale (PADS). The majority of the sample (89 %) were reported to experience pain in the previous week which presented as gastrointestinal (n = 8), musculoskeletal (n = 5), and seizure related pain (n = 5) that was intense (scored 0–10; M = 5.67, SD = 3.09) and long in duration (M = 25.22 h, SD = 53.52). Numerous pain-expressive behaviors were inventoried (e.g., vocal, facial, mood/interaction changes) when parents reported their child’s typical pain behaviors and based on independent direct observation during a reliably coded pain exam. This study provides subjective and objective evidence that individuals with RTT experience recurring and chronic pain for which pain expression ap...
Source: Journal of Developmental and Physical Disabilities - Category: Disability Source Type: research