Physical Therapy and Wellness Promotion Heidi Lane, DPT, PT, PCS Hemophilia Alliance Members’ Fall Meeting 9/18/2017

Session Topics Comprehensive/integrative care Describe physical therapy Discuss how PTs promote wellness Integrating physical therapy into your HTC

What does physical therapy look like at your HTC? Gut reaction…

pediatric hematologist nurse coordinator psychosocial professional MASAC Document #132: Standards and Criteria for the Care of Persons with Congenital Bleeding Disorders (Revised April 2002. Retrieved NHF.org, 09/17/2017). The Core Team: hematologist pediatric hematologist nurse coordinator psychosocial professional coagulation laboratory director ideally, include genetics counselor and physical therapist What is available to us for guidance on how to do this???

MASAC Document #132: Standards and Criteria for the Care of Persons with Congenital Bleeding Disorders (Revised April 2002. Retrieved NHF.org, 09/17/2017). The Core Team: hematologist pediatric hematologist nurse coordinator psychosocial professional coagulation laboratory director ideally, include genetics counselor and physical therapist

MASAC Document #132: Standards and Criteria for the Care of Persons with Congenital Bleeding Disorders (Revised April 2002. Retrieved NHF.org, 09/17/2017). ”Each core team member should participate in each comprehensive clinic as a full member of the assessment team, including the post-clinic discussion, identifying and talking with the patient and family regarding their special needs and providing follow-up with patients as appropriate.” Among other things….

“The Panel suggests that a hematologist, a specialized hemophilia nurse, a physical therapist, a social worker, and round-the-clock access to a specialized coagulation laboratory be part of the integrated care team, over an integrated care team that does not include all of these components.” Guidance for comp/integrative hemophilia care

“The Panel suggests that a hematologist, a specialized hemophilia nurse, a physical therapist, a social worker, and round-the-clock access to a specialized coagulation laboratory be part of the integrated care team, over an integrated care team that does not include all of these components.”

Who is a physical therapist? If the ideal model is to include PT – who is a PT

Little to no exposure to bleeding disorders in PT curriculum Physical Therapists “Transforming society by optimizing movement to improve the human experience” APTA Vision (2013) Licensed professionals Masters or clinical doctorate - from an accredited education program Specialists in activity, exercise and rehabilitation Little to no exposure to bleeding disorders in PT curriculum

Physical Therapy Practice Guidelines for evaluation of person’s with bleeding disorders (MASAC #238) “The physical therapy evaluation… is aimed at identifying musculoskeletal limitations and vulnerabilities which impact function and quality of life.” musculoskeletal and functional status develop educational and exercise programs perform pre- and post-operative rehabilitation and conservative treatment protocols maximize independent functional status of all persons seen at the comprehensive clinic. Some guidance – for PTs in HTCs MASAC Document #238. Approved 8/15/15 and adopted 11/13/15.

Physical Therapy Practice Guidelines for evaluation of person’s with bleeding disorders (MASAC #238) range of motion evaluation for assistive/adaptive devices strength orthopedic joint examination growth and development pain assessment change in status between visits sensation posture treatment interventions gait (ambulation) imaging studies may be indicated functional status MASAC Document #238. Approved 8/15/15 and adopted 11/13/15.

Promoting health and wellness – Young child with hemophilia at annual comprehensive clinic visit What does this look like?

Young child with hemophilia at annual comprehensive clinic visit Examination/Evaluation Patient priorities and concerns Musculoskeletal evaluation Functional evaluation Gait, Balance, sport-related Communicating findings to Patients/Families Education Home exercise program Wellness promotion Physical activity, diet, stress/anxiety etc What does this look like? Developmentally appropriate and culturally sensitive manner.

Balance/Proprioception - assessment

Working on balance at home

Ankle rehabilitation Strengthening Balance Courtesy S. Funk

Promoting health and wellness in the athlete with hemophilia Bleed clinic visit 15 with <1% FIX and history of repeated quadriceps muscle bleeds Pt goal: continue with competitive basketball PT intervention: Education, Education, Education Return to sport criteria Prevention of re-bleed Remaining active…and ultimately….

Promoting health and wellness in the athlete with hemophilia ultimately

Promoting health and wellness in the patient with hemophilia who is medically complicated

Promoting health and wellness in the patient with hemophilia who is medically complicated Comprehensive clinic visit: 36 y.o. with severe Hemophilia A, history of B total knee replacements, liver failure, comorbidities limited elbow extension and LE weakness Pt goal: attend daughter’s soccer game (walk across the field) and concerned about getting on/off the toilette PT interventions hiking poles elevated commode mini squats 36 y.o. with severe Hemophilia A, history of B total knee replacements – where he is today. Main impairments: limited elbow extension (B hiking poles), LE weakness Wants to be able to go to daughter’s soccer game and has difficulty getting on/off the toiler Through our assessment: B hiking poles, elevated commode, Mini squats

Promoting health and wellness in the girls and women with bleeding disorders PT intervention: Education Bleed recognition and management Physical activity Problem solve… EducationEmpowering women to get moving, despite chronic pain, e

What does physical therapy look like in your HTC? Given what we discussed today, is your HTC optimizing physical therapy? Do you have PT, has your experience been good??

PTs Need support Partners modules (Basic) Partners “Advanced for Physical Therapists” NHF Annual Meeting Colleagues in Hemophilia

Thank you!!

References MASAC Document #132: Standards and Criteria for the Care of Persons with Congenital Bleeding Disorders. NHF;s Medical and Scientific Advisory Committee. Revised April 2002. NHF-McMaster Guideline on Care Models for Haemophilia Management. PAI, et al. Haemophilia (2016), 22 (Suppl. 3), 6–16