“ To bleed or not to bleed ” Developing Individualized Treatment Plans for Adult Patients with Hemophilia 1 Adult Hemophilia Program of BC, St. Paul’s Hospital Sandra Squire Physiotherapist Dr. Shannon Jackson Medical Director Kam McIntosh Clinical Nurse Educator Claude Bartholomew Social Worker Dr. Pat Camp Research Mentor Deb Gue, Clinical Nurse Specialist Dr. Paul Yenson, Hematologist

Background Inherited Mostly Men They bleed ! – Pre 1950’s -> lived until 20’s – ’s -> tainted blood – Now -> safe treatment – Intravenous self-infusion 2

What do we mean by "bleeds”? Knee Joint

Comprehensive Care Since 1972 in BC Strong interdisciplinary collaboration – Since 2004 at Providence Health (St. Paul’s) – Support self-treatment at home Engagement with patients Home infusion record base Preventative > Reactive Philosophy 2004 Now Individualization

Realization Improvement from before but still bleeding Can we do better? – To bleed or not to bleed PHC Research Challenge 2012 Supporting novice interdisciplinary research

Prospective observational study 1.Baseline bleeding frequency on current prophylaxis 2.Shared decision making -> new treatment plan **Often from 2-3 times per week to DAILY injections** Lowering dose Measuring lowest level in patients blood 3.Follow up measures 4 and 12 months after: -bleeding frequency -amount of factor infused -physical activity -quality of life 6 ** PHC Research Challenge **

Results – Joint bleeds 12 4 months – 75% ZERO bleeds 12 patients added Now 24 patients – Sustained results – ? Improving w/ time

Other outcomes Physical activity – 90% measured as sedentary at baseline and 4 months Quality of life – No change at 4 months Factor utilization – Amount prescribed – Overall consumption ( 29% – Consumption to treat bleeds 50%

Reflection Patient involvement – Control of day to day lives – Adaptability – Working relationship with team Foundation of communication and trust

What now? Continue! Acknowledge – Our patients Knowledge translation – Video…