Hemophilia is a rare disease. As such many health care professionals are not aware of the integral part physiotherapists play in the management of people with bleeding disorders. Physiotherapy is recognized as a means to improve quality of life, improve healing times and decrease frequency of bleeds, and to aid in the prevention of joint destruction due to multiple bleeds.
The musculoskeletal system is frequently affected by bleeding disorders. Physiotherapists are specialists in assessment and treatment of the musculoskeletal system. A physiotherapist is important not only as a treatment specialist but also as a consultant in the prevention and management of musculoskeletal impairments and disabilities.
It would follow that the physiotherapist must be an integral member of every bleeding disorder comprehensive care team.
This document outlines the vision of the CPHC as to the roles and functions of the PT on the comprehensive care team. It does not supersede the legislative responsibilities of licensed physiotherapists within Canada.
We recognize variables within the Canadian Health care system that include, education, licensing, access, and program management that may limit various individuals’ ability to implement these standards to their full extent. We make these recommendations in accordance with the Canadian Health Act, WHF, CPA, and CHS in hope that all Canadians with bleeding disorders can receive a similar level of expert care.
Provision of Physiotherapy Service
Standard 1: the comprehensive care team includes a physiotherapist with dedicated and protected EFT allocation. This will enable the physiotherapist to better fully meet the needs of the person with a bleeding disorder (PWBD).
The facility will enable the physiotherapist to obtain the necessary knowledge and experience to work in this area. A back up therapist should be identified to provide service in the absence of the team therapist.
Standard 2: The physiotherapist will be notified of any suspected muscle or joint bleeds by the initial contact health care team member or the patient themselves. If the physiotherapist is the first point of contact he/she is responsible for notifying the other care team members.
People with acute muscle or joint bleeds that are admitted to hospital and referred to physiotherapy will be seen with in 24 hours.
Standard 3: PWBD are assessed using a standard comprehensive assessment form such as the Canadian Hemophilia Physiotherapy assessment form. (Appendix 1)
Documentation of the assessment will be included on the medical record, and appropriate follow up will be determined by the treating physiotherapist.
A complete musculoskeletal assessment will be done on a yearly basis regardless of the severity of the bleeding disorder, in accordance with the Canadian Hemophilia Society and the ACHD National Standards document page 17.
The assessment will include impairment and functional measures using a reliable and valid objective measure tool, such as the HAL (appendix 2)
Standard 4: due to local circumstances PWBD may be seen by physiotherapists not affiliated with the comprehensive treatment centers. In these circumstances the therapist from the comprehensive clinic team will be available for consultative purposes, and to facilitate communication with the rest of the team.
Musculoskeletal assessmentStandard 5: Musculoskeletal assessments using the Canadian Hemophilia Physiotherapy Assessment Form will be done on a yearly basis. A comprehensive annual assessment should also include functional measures, and developmental measures in pediatrics.
Assessment of acute injuries will include:
5.1 History of present condition
- details of bleed onset (mechanism of injury)
- factor replacement given and response to treatment
- pain and stiffness
5.2 Past medical History
- recent joint or muscle bleeds
- previous target joints; location and number
- child development as appropriate
- any alternative therapy being used
5.3 Specific objective criteria
- warmth, redness over specific joint or muscle
- muscle spasm
- area of pain and any numbness
- active pain free movement
- comparison of movement to baseline data
Standard 6: following assessment a clinical diagnosis, goals and treatment plan are discussed and agreed upon by the individual and the treatment team. This will be documented on the medical record and will include:
- relieve pain and stiffness
- prevent or reduce deformity
- maintain or improve muscle length and flexibility
- maintain and improve muscle power and endurance
- regain pre-bleed status
- maximize functional capacity
- maintain or increase exercise tolerance
Standard 7: Implementation of physiotherapy treatment plan may occur through follow up at the treatment center, at home through a customized program, or locally through a referral process. Coordination/communication with team members is necessary in order to ensure appropriate haemostatic coverage during physiotherapy treatment.
Standard 8: Consultation with orthopedic surgery may be initiated by the clinic physiotherapist (PT), or other team members. In the later case the physiotherapist must be aware that surgery is planned. The PT will perform a comprehensive assessment prior to surgery, and arrange for an appropriate pre-conditioning program that will be monitored by the treating PT.
Detailed planning is especially important when dealing with patients with inhibitors. In addition to inhibitor status and age, which have been mentioned, it is also important to ascertain:
- What are the patient’s expectations of the surgery? Are they realistic? (Mancuso et.al.,2001)
- Does the patient understand the importance of compliance with the treatment and rehabilitation program?
- Do they understand what is entailed – e.g. the procedure itself, the rehab process
- Does the patient have adequate supports in place to prepare for and recover from the surgery? (E.g. adequate family support, ability to stay at/near the hemophilia center for the duration of the rehab process, or a knowledgeable/competent therapist close to home to supervise the latter stages of the rehab) (Sharma et.al.,1996)
- What is the status of the other joints/limbs? Will he be able to use walking aids if required? Will the proposed surgery have a positive or negative effect on the other joints? Should multiple procedures be done simultaneously? (Jones et.al. 2005)
Ideally, the PT and the patient will have established a working relationship prior to the surgery; the PT will be familiar with the patient’s overall functional status, his bleeding patterns, and the state of his muscles and joints treatment goals and time lines will have been discussed. A program to prepare adjacent muscles and joints may have been undertaken; and the patient understands his responsibilities in the rehabilitation process. (Stephenson D, 2005)
References for this section:
- Prognostic factors for functional outcome of total knee replacement: a prospective study. Sharma L et al . J Gerontol A Biol Sci Med Sci. 51(4):M152-7; 1996
- Patients’ Expectations of Knee Surgery, Mancuso CA et al; JBJS 83-A(7) 2001
- Total Joint Arthroplasties: Current Concepts of Patient Outcomes after Surgery. Jones CA, Beaupre LA, Johnston DWC, Suarez-Almazor ME. Clin Geriatr Med 21 (2005)
- Rehabilitation of patients with hemophilia after orthopaedic surgery: a case study. Stephenson D., Haemophilia 11 (suppl 1), 26-29.2005
Standard 9: Post op care. The physiotherapist will be familiar with the details of the surgery, and ensure that the PWD has adequate haemostatic coverage during the rehab process. The PT will maintain regular contact with the treatment team for the duration of the rehab process.
Standard 10: The physiotherapist will be aware of precautions and contraindications regarding the treatment of PWBD.
10.1 active rehab of the bleeding muscle or joint should not be commenced until hemostasis has been achieved The treating therapist should be aware of the hemostasis of the client prior to starting any therapy
10.2 factor replacement is recommended on the day of physiotherapy, or with in the ½ life of the factor, and depends on multiple variables which include the techniques to be administered, the skill/ experience of the PT, the stage of tissue healing, and the previous health of the tissue to be treated.
10.3 the PT needs to be aware of co-morbidities including HIV and Hep C status. The PT must take care not to expose the patient to opportunistic infections from other patients or equipment. The PT must also work to ensure that the patient is not over worked, and the system taxed beyond its recovery levels.
10.4 inhibitors can complicate rehab. Inhibitor response and ability to achieve hemostasis are highly variable. It is recommended that therapy for ALL persons with inhibitors take place in the treatment centers or be supervised by a PT experienced in dealing with inhibitor patients.
10.5 grade 5 manipulations both peripheral and spinal are contraindicated
10.6 modalities, including acupuncture need to be used with caution
Standard 11: the physiotherapist will function as an educator and advocate to the clinical care team members, the patient and their families/care givers, health care professionals and students. Education will include but is not limited to:
- the role of the physiotherapist in the management of bleeding disorders
- recognition and management of musculoskeletal bleeding episodes
- the short and long term effects of muscle and joint bleeds on the body
- joint protection techniques; this may include orthotic support, proper body mechanics and ergonomic suggestion
- benefits of physical fitness and health life style
- potential surgical options and considerations
- alternative therapies
- separate statement regarding prevention – via conditioning and sports selection, proper preparation for sport
Standard 12: The PT will maintain competence by investing time and effort to improve their knowledge base, skills and clinical judgment related to hemophilia care.
Sources of information may include: websites, journals, communication with other colleagues in hemophilia care, and hemophilia related conferences. It highly recommended that the treating therapist be an active participant in the activities of the CPHC.
Standard 13: The PT should participate in collaborative research related to bleeding disorders and their complications. The PT will have access to the CHARMS and any other electronic patient record systems used by the health care team.
The above standards document has been agreed to and ratified by the CPHC. Concerns exist within the facility’s ability to carry out these standards due to lack of comprehensive clinics that include a physiotherapist, and fragmentation between pediatric and adult care.