HOW DO PHYSIOTHERAPISTS IN HAEMOPHILIA TREATMENT CENTERS AND IN PRIMARY CARE COOPERATE?

M.A. Timmer¹, M.F. Pisters^2,3

Background: Joint bleeds are the hallmark of haemophilia, leading to a disabling haemophilic arthropathy (HA). To regain physical functioning after bleeding and maintain physical functioning in persons with HA, physiotherapy is highly recommended. Physiotherapy treatment is generally performed in primary care (PC). Given the rare nature of the disease, it can be expected that physiotherapists in PC have limited experience with haemophilia. However, regular treatment by specialized physiotherapist from haemophilia treatment center (HTC) is not feasible for many patients. Cooperation between HTC physiotherapists and PC physiotherapists is therefor essential to ensure high quality care.

Purpose: The aim of the study is to evaluate the current cooperation between HTC and PC physiotherapists in the treatment of persons with haemophilia.

Methods: Three questionnaires were developed for patients, HTC physiotherapists and PC physiotherapists in co-creation with stakeholders. Patients with haemophilia from all ages (parents of patients <16 years) were invited to participate if they had visited a PC physiotherapist at least once. PC physiotherapists who have treated ≥1 patients with haemophilia and all (pediatric) HTC physiotherapists in the Netherlands were invited to participate. Open-ended questions were analyzed using a thematic approach.

Results: In total, 54 patients (median age 41.6, range 8-75), 96 PC and 8 HTC physiotherapists participated. Most (57.3%) PC physiotherapists had only experience with 1 patient with haemophilia and 7/8 HTC physiotherapists had referred patients to PC physiotherapy.  Many PC physiotherapists felt they lacked knowledge to provide sufficient quality of care for joint bleeds (39.6%), muscle bleeds (42.1%), synovitis (37.5%) and HA (43.8%). Some patients felt that the PC physiotherapist did not have enough information about haemophilia (29.6%) or about their specific situation (18.5%). PC physiotherapists did not receive a referral as often as they would have liked and they want to receive more information about the patient’s specific situation, align treatment with other caregivers and receive a specific care plan. HTC physiotherapists did not get an end report as often as they preferred. Most PC physiotherapists (53.1%) prefer to consult the HTC at least once and in case of questions of problems. Most patients (73.2%), PC physiotherapists (58.2%) and HTC physiotherapists (58.2%) were positive about the collaboration. Challenges that emerged from the open-ended questions included 1) little knowledge of PC physiotherapists about haemophilia 2) difficulty to gain experience and 3) a barrier to cooperate. Recommendations that emerged were 1) to train PC physiotherapists, 2) to improve collaboration between PC and HTC and 3) to build a network of PC physiotherapists experienced with haemophilia.

Conclusion(s): Patients and physiotherapists feel that collaboration between HTC and PC is essential to provide sufficient quality of physiotherapy care for persons with haemophilia. Experiences with collaboration were mostly positive, but improvements can be made in taking away barriers to collaborate, training PC physiotherapists and building a network with PC physiotherapists experienced with haemophilia.

Implications: Improving collaboration between HTC and PC physiotherapists can improve quality of care for patients with haemophilia but may also be useful for the physiotherapy treatment of other rare diseases.

Funding, acknowledgements: This study was funded by the University fund of Utrecht University

Keywords: haemophilia, primary care, rare diseases

Topic: Community based rehabilitation

Did this work require ethics approval? No

Institution: University Medical Center Utrecht

Committee: University Medical Center Utrecht

Reason: Patients only had to fill in a question about there experience with physiothery