Lambing A, et al. – In order to determine agreement/disagreement between patients, caregivers, and health care providers, perceptions of pain and pain management in adolescents and young adults (AYAs) with haemophilia or von Willebrand disease (VWD) were gauged. Data highlighted the need for ongoing research in haemophilia and VWD pain management, and on the differences in pain perception between patients, caregivers and providers.

Methods

• AYA patients (N=89), their caregivers (N=77), and providers (N=54) reported on pain perception, pain treatment and pain control by using an online questionnaire.
• Experts estimated acute and chronic pain in patients via the Faces Pain Scale–Revised (FPS-R).
• Moreover, questionnaires queried about pharmacologic and non-pharmacologic pain management methods and how well providers and caregivers helped to manage pain.

Results

• Results revealed poor agreement between patients and caregivers across all pain levels, perception of pain control and effectiveness of pain management.
• They reported poor agreement between patients and caregivers (kappa=0.04; 29% agreement) and patients and providers (kappa=-0.07; 21.4% agreement), specifically for chronic pain.
• Only 67% and 43%, respectively, utilized medication for their specific pain, among patients reporting acute or chronic pain.
• In contrast to their providers expectations, patients used more opioid medications.
• It was reported that on average, AYAs reported initial use of pain medications for chronic pain at 11.5 years.