V.-A. Chantrain1, S. Lobet2, P. De Smet3, A. Foubert1, C. Lambert4, M. Meeus5, N. Roussel1
1Universiteit Antwerpen, Department Rehabilitation Sciences and Physiotherapy – Research Group MOVANT MOVE-adapt, Antwerpen, Belgium, 2Université Catholique de Louvain, SSS/FSM -- Faculté des Sciences de la Motricité SSS/IREC -- Institut de Recherche Expérimentale et Clinique SSS/IREC/NMSK -- Neuro Musculo Skeletal Lab, Bruxelles, Belgium, 3Association de l'Hémophilie - Hemofilievereniging (AHVH), Bruxelles, Belgium, 4Université Catholique de Louvain, SSS/IREC -- Institut de Recherche Expérimentale et Clinique SSS/IREC/SLUC -- Pôle St. Luc SSS/MEDE -- Faculté de Médecine et Médecine Dentaire, Bruxelles, Belgium, 5Universiteit Antwerpen, Department Rehabilitation Sciences and Physiotherapy – Research Group MOVANT MOVE-adapt - Labo M²SENS, Antwerpen, Belgium
Background: Hemophilia is an X-linked hereditary bleeding disorder caused by deficiency in coagulation and a tendency for bleeding in muscles and large synovial joints (i.e. elbows, knees and ankles). Intra-articular bleeding (hemarthrosis) causes synovial hypertrophy and cartilage damage, with gradual but inexorable joint destruction (hemophilic arthropathy) leading to pain and disability which prevent patients with hemophilia (PwH) from having normal function and quality of life.
In the past decade, the world witnessed a rapid and unprecedented improvement in the hemophilia medical care bringing the annual bleeding rate nearly to zero and allowing PwH to have a more active lifestyle. However, musculoskeletal damage remain despite adequate treatment and PwH have still poorer functional status compared with the general population. Physiotherapists are therefore often included in the hemophilia multidisciplinary team.
In the past decade, the world witnessed a rapid and unprecedented improvement in the hemophilia medical care bringing the annual bleeding rate nearly to zero and allowing PwH to have a more active lifestyle. However, musculoskeletal damage remain despite adequate treatment and PwH have still poorer functional status compared with the general population. Physiotherapists are therefore often included in the hemophilia multidisciplinary team.
Purpose: The purpose of this study was to assess the prevalence of pain amongst Belgian adult PwH in and its impact on QoL.
Methods: A national survey was sent in 2019 to all adult members of the Belgian hemophilia association. The Brief Pain Inventory Short Form (BPI-SF) was chosen to assess the severity of pain as it is validated in the osteoarthritis populations and commonly used in PwH. The QoL was assessed using the EQ-5D-3L which includes a EQ-5D summary score and a EQ-5D-VAS (100-point visual analogue scale, with zero representing the worst and 100 the best imaginable health). The EQ-5D-3L was selected as it is the most widely used questionnaire to assess QoL and is also often used in PwH. Descriptive analysis determined pain prevalence and QoL and their relationship was established using Spearman's correlation coefficients.
Results: Overall, 176 adult PwH responded to the survey including 90 severe, 30 moderate and 56 mild PwH. Median age was 54.0 (range 18 - 89) years and 48% participants reported an orthopedic surgery history. Results of BPI-SF revealed a median (IQR) value for the worst pain of 3.5/10 (0 - 9), least pain of 1/10 (0 - 7), pain in the last 24 hours of 2/10 (0 -8) and current pain on the assessment day of 1/10 (0 - 8). Moreover, 62% participants reported having pain on the assessment day. Seventy-one percent PwH reported interference of pain in the last 24 hours with walking, 66% with daily activities, 64% with daily work, 60% with mood and 57% with sleep. Concerning EQ-5D, 52% patients reported having problems with mobility, 38% with daily activities and 64% with pain. Eighteen percent subjects rated their health at a lower level than 60/100 on the EQ-5D-VAS, which is considered as a poor health status. A negative, strong and significant relationship was found between the severity of pain and quality of life (r = -0.659, p < 0.01).
Conclusion(s): Despite adequate medical treatment, pain is still a daily concern in the majority of PwH. Problems with mobility and daily activities are reported as well.
Implications: This study shows that pain is still a major concern in PwH, highlighting the need of enhancing pain management in hemophilia.
Funding, acknowledgements: None declared.
Keywords: Hemophilia, Pain, Quality of life
Topic: Health promotion & wellbeing/healthy ageing/physical activity
Did this work require ethics approval? No
Institution: Universiteit Antwerpen
Committee: Comité voor Medische Ethiek UZA, Wilrijkstraat 10, B-2650 Edegem
Reason: Covered by §31 of the Belgian Act on Experiments on the Human Person.
All authors, affiliations and abstracts have been published as submitted.
