Pain associated with bleeding disorders has been demonstrated to have an impact on patients’ and families’ quality of life. Both acute and chronic pain are common experiences and require attention by professionals working in haemophilia treatment centres (HTCs). The benefits of psychological pain management strategies such as cognitive behaviour therapy and self-management skills training are well documented; however, it is not well understood how Canadian social workers involved in haemophilia care perceive and provide pain management support to patients.
To explore the current understanding of pain management and practice as well as the education needs of members of Canadian Social Workers in Hemophilia Care (CSWHC).
Twelve semi-structured qualitative interviews were conducted with members of CSWHC. Transcribed interviews were coded with NVivo software and thematically analysed.
The four key themes reflecting the experiences of social workers are: 1) Limited comprehension of key issues related to pain; 2) Conditioning to push through pain; 3) Expanding pain knowledge to enhance practice; 4) How we practice social work and choose to step in.
The current practice of CSWHC members aligns with literature in three main areas including assessment, instrumental services, and counselling. Social workers support the development of pain education and practical resources for patients with haemophilia who experience pain. While formal education, advocacy, and policy development of pain assessment and management are recognised, these areas require further research and development.
Chronic pain is common in people with bleeding disorders and can complicate clinical management, impair quality of life, and contribute to disability. People living with bleeding disorders often seek advice on pain management from the bleeding disorder treatment team; however, lack of condition-specific assessment tools to guide clinical communication about pain are a barrier to care.
To develop and examine the clinical feasibility of a patient-reported outcome (PRO) tool designed to facilitate pain assessment and support clinical communication about pain for adults attending outpatient bleeding disorder clinics.
Tool development involved patient cognitive interviews and item refinement by a multidisciplinary clinician and patient working group. Clinical feasibility of the tool was evaluated with a survey of a small clinical sample in an outpatient bleeding disorder clinic. The Pain Treatment Planning Questionnaire (PTPQ) contains 28 items on the pain experience and treatments used to manage or prevent pain.
Participants completing the feasibility testing (n=42, 62% male) reported mild mean pain scores (usual pain μ=2.4, SD=2.0) with the majority (57.1%) reporting persistent pain in the past 30 days. Median PTPQ completion time was five to seven minutes and mean item response rate was 95.2%. The majority (95.2%) of participants found the questionnaire easy to understand, reported no difficulty understanding items, and recommended no changes to the questionnaire.
Preliminary testing among a small sample in a clinical setting suggests that the PTPQ is a clinically feasible, acceptable, condition-specific PRO pain assessment tool for adult patients with bleeding disorders. Further testing is required to determine if the PTPQ affects treatment decision-making and patient outcomes.