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Long-term therapy for a chronic disease

Help your MPS VI patient adhere to NAGLAZYME®(galsulfase) therapy

Like treatments for other chronic illnesses, patients must receive regular and consistent NAGLAZYME infusions to derive benefit from treatment. That’s why it is essential to proactively address issues that may affect long-term treatment adherence, including:

  • Difficulty keeping infusion appointments due to work/school obligations or disease complications
  • Anxiety due to painful IV experiences
  • Transportation and other issues
  • Inexperience or lack of understanding by caregivers about caring for chronic conditions

The role of a multidisciplinary team is not only to prescribe and treat patients but may also be to become an advocate for their patients.17 Indeed, research suggests that the social isolation that often accompanies chronic illness can lead to emotional and psychological stress, dysfunction, and compliance issues.18

Adherence also depends on managing patient and caregiver expectations as well as providing assistance with accessing other available resources.

 Next: Consequences of noncompliance

REFERENCES

  1. Harmatz P, Giugliani R, Schwartz I, et al. Enzyme replacement therapy for mucopolysaccharidosis VI: a Phase 3, randomized, double-blind, placebo-controlled, multinational study of recombinant human N-acetylgalactosamine 4-sulfatase (recombinant human arylsulfatase B or rhASB) and follow-on, open-label extension study. J Pediatr. 2006;148:533-539.
  1. Harmatz P, Giugliani R, Schwartz IV, Guffon N, Teles EL, Miranda MC, et al. Long-term follow-up of endurance and safety outcomes during enzyme replacement therapy for mucopolysaccharidosis VI: Final results of three clinical studies of recombinant human N-acetylgalactosamine 4-sulfastase. Mol Genet Metab. 2008. doi:10.1016/j.ymgme.2008.04.001.
  1. Lindeke LL, Leonard BJ, Presler B, Garwick A. Family-centered care coordination for children with special needs across multiple settings. J Pediatr Health Care. 2002;16:290-297.
  1. Holley UA. Social isolation: a practical guide for nurses assisting clients with chronic illness. Rehabil Nurs. 2007;32:51-56.