People with haemophilia often experience chronic pain, disability, and reduced quality of life. Patients living with a chronic illness may be particularly susceptible to anxiety and distress, brought on by the illness itself or by other factors. Effective management of chronic disease often requires regular planning and self-care, and psychological distress can lead to worsening of the condition and related complications.
The relationship between disease and each patient’s experience of illness is unique, difficult to predict, but highly relevant to successful treatment. To include the subjective nature of haemophilia in research and clinical practice, a unique measure of haemophilia-related distress (HRD), called HRDq, has been recently introduced.
The HRDq is a questionnaire that can support the clinical and research team in characterising the subjective experience of haemophilic patients and identifying possible sources of disease-related distress in order to intervene. Interventions that may be dictated by HRDq include education about the disease and its management and assistance in developing support systems. Given the relatively short time required for completion, HRDq could be incorporated into clinical practice and research without interfering with clinical flow. The added value for patients is the ability to personalise care to address barriers to optimal disease management.
- Kempton CL, Michaels Stout M, Barry V, et al. Validation of a new instrument to measure disease-related distress among patients with haemophilia. Haemophilia. 2020;00:1–9. https://doi.org/10.1111/ hae.14187