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| Developing a shared decision plan prior to training/sports activity Michael Tarantino. |
Abstract
Developing a shared decision plan prior to training/sports activity
Shared decision-making, (SDM) is a collaborative process between a patient and their health care team. The ultimate goal of SDM is to personalize treatment to achieve outcomes most important to the patient. Validated models for SDM are not established for most bleeding disorders. A SDM model, established in hemophilia, will be discussed for its potential adaptation in other bleeding disorders.
Healthcare providers (HCPs) must understand the basic process of SDM and incorporate concepts of personalized medicine (PM) into SDM discussions with their patients. In as much as the HCP should understand and implement the goals of the patient, the HCP is ultimately responsible for the healthcare plan, including drug prescriptions.
Care for bleeding disorders has including major advances in drug treatments, preventative regimens, and access to care. Personalized care is at the crux of the SDM process. Co-morbid conditions (i.e., EDS, disorders of balance, culture-specific behaviors/activities) require attention in SDM discussions.
The potential benefit of SDM requires an understanding of patients’ goals of treatment. A recent approach to shared decision-making is the hemophilia-specific, patient-centered outcome measure known as GOAL-Hēm. This measure allows persons with hemophilia to set and monitor individualized goals for treatment using goal attainment scaling, which allows patients and clinicians to track progress toward meaningful goals. Patients with hemophilia address a prespecified goal in collaboration with their HCP, then create individualized metrics to measure change. GOAL-Hēm may be a useful road map for the development of other patient-centered outcome measures that involve shared decision-making.
In addition, the HCP must understand all that is involved in the patient’s goals, especially in predicting the risk for injury from each sport or activity. The patient’s competitiveness and degree of participation in the sport or activity must also be considered. HCPs should know that (by speaking with caregivers, athletic coaches and trainers) the time spent in, nature of training drills and intensity level during sports practices, is far greater than time and intensity spent in actual games. Weightlifting is a staple of sports training. Regardless of prophylaxis regimen, a program of safe weightlifting, especially for patients with severe bleeding disorders, must be part of the SDM process for sports and activity participation. Proper familiarity with the patient experience will guide HCP recommendations, not only for physical injury prevention, but for implementation or modification of drug prophylaxis, if warranted. These details illustrate the importance for the multidisciplinary team, including the physical therapist, in SDM discussions.
Non-sporting activities tend to be generationally and culturally specific. Certain behaviors at music festivals, for example, transcend generations, (and justify onsite medical personnel). SDM requires the HCPs to be informed and aware of injury potential and bleeding risk of any intended activities and unintended consequences. Fall related trauma while intoxicated may lead to serious hemorrhage and should be discussed with a plan for prevention.
The SDM process gives HCMs more insight into patients’ risk for serious bleeding and should be implemented in all healthcare recommendations, including those regarding recreation and sports participation.
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