An assessment of the relative influence of pain coping, negative thoughts about pain, and pain acceptance on health-related quality of life among people with hemophilia

Abstract

Many people with hemophilia are affected by chronic arthritic joint pain as well as acute bleeding pain. In this cross-sectional study, 209 men with hemophilia A or B completed the Hemophilia Pain Coping Questionnaire (HPCQ), the Chronic Pain Acceptance Questionnaire (CPAQ), and the RAND 36-item Health Survey (SF-36), a measure of health-related quality of life. Multiple regression was used to test the influence of active pain coping, passive adherence coping, and negative thoughts about pain (HPCQ scales), and activity engagement and pain willingness (CPAQ scales), on physical and mental components of quality of life (SF-36 PCS and MCS scales), taking account of age, hemophilia severity, use of clotting factor, and pain intensity. Pain intensity was the main influence on physical quality of life and negative thoughts was the main influence on mental quality of life. Activity engagement and pain willingness had small but significant influences on physical and mental quality of life. Pain willingness also moderated and partly mediated the influence of pain intensity on physical quality of life, and activity engagement and pain willingness mediated the influence of negative thoughts on mental quality of life. Negative thoughts moderated and partly mediated the influence of pain intensity on mental quality of life. There was no evidence that active pain coping influenced quality of life. The findings suggest that quality of life in hemophilia could potentially be improved by interventions to increase pain acceptance and reduce negative thoughts about pain, especially among those with less severe pain

Randomized trial of a DVD intervention to improve readiness to self-manage joint pain

“…The research protocol was approved by the University ethics committee. As described in a cross-sectional analysis of baseline data, the most common reasons given for not taking part in the study were having a mild form of hemophilia and experiencing little or no bleeding pain, and participants differed from non-participants in being more likely to have severe hemophilia, but did not differ in age or type of hemophilia [15].…”

Effect of Acute Bleeding on Daily Quality of Life Assessments in Patients with Congenital Hemophilia with Inhibitors and Their Families: Observations from the Dosing Observational Study in Hemophilia

“…Without consistent treatment such as routine FVIII or FIX replacement therapy to prevent bleeding, individuals with congenital hemophilia may experience recurrent bleeding, resulting in chronic arthritic pain and acute bleeding pain [1]. Treatment of frequent bleeding episodes and disability from hemophilic synovitis and arthropathy because of hemarthroses (joint bleeds) can result in decreased QOL for patients with congenital hemophilia and their caregivers.…”

Dental health and oral health‐related quality of life in children with congenital bleeding disorders

“…OHR-QoL also allows for a shift from traditional medical/dental criteria to assessment and care that focus on a person's social and emotional experience and physical functioning in defining appropriate treatment goals and outcome [2].By this measure, the discrepancy between the patient's wants, needs or demands, and what the patient has, will be determined. [3] Despite numerous reports on general health and quality of life in CBD patients [4][5][6][7][8], to our knowledge, few published studies have assessed the dental health as well as OHR-QoL in CBD, especially in children. [3,9].…”