Understanding ADPKD helps support life-long management
Autosomal dominant polycystic kidney disease (ADPKD) is a rare disease that can lead to severe impairment of kidney function and kidney failure.1-3 There were approximately 140,000 diagnosed cases of ADPKD in the United States in 2017.4 It has been estimated that the annual costs associated with end-stage renal disease due to ADPKD are $1.8 billion.5 Identification of patients at risk for rapid progression may provide an opportunity for intervention.6-8
Frameworks in Health and Quality: Collaborating for Improved ADPKD Management is a series of educational resources for healthcare stakeholders — including providers and payers who can choose to share resources with patients and their caregivers — that aims to:
- Emphasize the importance of understanding ADPKD and its impact
- Enhance communication among all stakeholders
- Support the healthcare team with patient and caregiver educational materials
- Promote ADPKD topics such as management, risk factors for rapid progression, patient engagement, and shared decision making
Evidence demonstrates that earlier detection and management of ADPKD may provide an opportunity for intervention to treat early-onset complications.9,10 Our Frameworks in Health and Quality: Collaborating for Improved ADPKD Management program can complement your efforts by providing resources to key stakeholders who are in a position to help improve the care delivered to patients.
Program materials include key issues for payers such as clinical and economic disease burden, identification of at-risk patients, and disease management.
Program materials include key issues for healthcare providers such as diagnosis, monitoring disease progression, disease management, and potential strategies to collaborate with patients and caregivers to help manage ADPKD.
Program materials for patients and caregivers focus on education, management, engagement, and communication associated with ADPKD.
- US Food and Drug Administration. Developing products for rare diseases and conditions.
https://www.fda.gov/forindustry/developingproductsforrarediseasesconditions/default.htm. Accessed October 9, 2018.
- Takiar V, Caplan MJ. Polycystic kidney disease: pathogenesis and potential therapies. Biochim Biophys Acta Mol Basis Dis. 2011;1812(10):1337-1343.
- Hateboer N, v Dijk MA, Bogdanova N, et al. Comparison of phenotypes of polycystic kidney disease types 1 and 2. European PKD1-PKD2 Study Group. Lancet. 1999;353:103-107.
- Data on file. Otsuka America Pharmaceutical, Inc; Rockville, MD. #TOLV 004.
- Kelleher CL, McFann KK, Johnson AM, Schrier RW. Characteristics of hypertension in young adults with autosomal dominant polycystic kidney disease compared with the general US population. Am J Hypertens. 2004;17 (11 Pt 1):1029-1034.
- Grantham JJ, Mulamalla S, Swenson-Fields KI. Why kidneys fail in autosomal dominant polycystic kidney disease. Nat Rev Nephrol. 2011;7:556-566.
- Grantham JJ, Torres VE, Chapman AB, et al. Volume progression in polycystic kidney disease. N Engl J Med. 2006;354:2122-2130.
- Schrier RW, Brosnahan G, Cadnapaphornchai MA, et al. Predictors of autosomal dominant polycystic kidney disease progression. J Am Soc Nephrol. 2014;25(11):2399-2418.
- Masoumi A, Reed-Gitomer B, Kelleher C, Bekheirnia MR, Schrier RW. Developments in the management of autosomal dominant polycystic kidney disease. Ther Clin Risk Manag. 2008;4(2):393-407.
- Ness B, Stovall K. Current recommendations for treating autosomal dominant polycystic kidney disease. JAAPA. 2016;29(12):24-28.