A review of evidence about behavioural and psychological aspects of chronic joint pain among people with haemophilia

Abstract

Joint pain related to haemophilia affects large numbers of people and has a significant impact on their quality of life. This article reviews evidence about behavioural and psychological aspects of joint pain in haemophilia, and considers that evidence in the context of research on other chronic pain conditions. The aim is to inform initiatives to improve pain self-management among people with haemophilia (PWH). Reduced pain intensity predicts better physical quality of life, so better pain management should lead to improved physical quality of life. Increased pain acceptance predicts better mental quality of life, so acceptance-based approaches to self-management could potentially be adapted for PWH. Pain self-management interventions could include elements designed to: improve assessment of pain; increase understanding of the difference between acute and chronic pain; improve adherence to clotting factor treatment; improve knowledge and understanding about the benefits and costs of using pain medications; improve judgements about what is excessive use of pain medication; increase motivation to self-manage pain; reduce negative emotional thinking about pain; and increase pain acceptance. The influence of behavioural and psychological factors related to pain are similar in haemophilia and other chronic pain conditions, so there should be scope for self-management approaches and interventions developed for other chronic pain conditions to be adapted for haemophilia, provided that careful account is taken of the need to respond promptly to acute bleeding pain by administering clotting factor.

Assessment and management of pain in children and adolescents with bleeding disorders: a cross‐sectional study from three haemophilia centres

“…This concurs with a study of adult haemophilia patients where more than 80% of the participants used factor and rest for pain relief . Administration of clotting factor concentrates is the key in management of haemophilia . However, 20.69% of the current study subjects who had pain and had to use a factor replacement product did not administer factor for pain relief.…”

Predictors of quality of life among adolescents and young adults with a bleeding disorder

“…However, differences in physical HRQoL (PCS) were not observed in our study, which is a surprising finding given that prophylaxis is associated with fewer joint bleeds and less pain [7], and a recent review found that joint status was associated with both social and emotional well-being [44]. One possible explanation for the findings in our study is that physical sequelae of the disease have not yet manifested in AYAs, a hypothesis also set forth by Poon et al [20].…”

Pain in haemophilia: are we listening?

“…Chronic joint pain dominates the literature on self‐management, but the acute pain of a bleed is also mentioned in most surveys. Better pain management leads to improved physical HRQoL, whereas increased pain acceptance leads to improved mental HRQoL . In studying the management of pain by PWH, it was found that they used task‐oriented coping at the same frequency as a control group, which would seem to be a better approach than using emotion‐oriented coping.…”