Become a patient advocate
Optimal outcomes depend on maximum support3
Patients with MPS VI become progressively worse over time, often becoming wheelchair bound or bedridden.2 Research has shown that issues such as limited mobility and lack of transportation can impact emotional and psychological well-being and also adherence to therapy.18 That’s why the physician-patient relationship is so important.
Psychosocial support, namely patient advocacy, is a necessary part of any treatment plan for patients with MPS VI. This is especially true of patients requiring frequent and regular ERT infusions.3
What healthcare providers can do
Due to its multisystemic nature, treatment of MPS VI requires a multidisciplinary approach.3 Care coordination, which includes assessment of patient needs, evaluation, education, monitoring and support is a key to insuring proper advocacy for patients.17
Become a patient advocate by:
- Engaging in individual counseling
- Encouraging interaction with a multidisciplinary team of providers
- Promoting support groups and communication with other patients and caregivers3,17
A complete list of patient and advocacy groups can be found here.
Next: Managing expectations