Abstract: FR-PO321
Patient-Reported Disease Burden in Autosomal Dominant Polycystic Kidney Disease (ADPKD) Using the ADPKD Pain and Discomfort Scale (ADPKD-PDS) and ADPKD Impact Scale (ADPKD-IS)
Session Information
- Cystic Kidney Diseases - II
November 03, 2017 | Location: Hall H, Morial Convention Center
Abstract Time: 10:00 AM - 10:00 AM
Category: Genetic Diseases of the Kidney
- 801 Cystic Kidney Diseases
Authors
- Oberdhan, Dorothee, Otsuka Pharmaceutical Development & Commercialization, Inc., Princeton, New Jersey, United States
- Kamat, Siddhesh, Otsuka Pharmaceutical Development & Commercialization, Inc., Princeton, New Jersey, United States
- Denny, Alexis, PKD Foundation, Kansas City, Missouri, United States
Background
ADPKD is an inherited disease leading to kidney enlargement, worsening of kidney function, and quality of life impacts.
The objective of this research is to describe patient-reported pain, discomfort, and disease impact using two new questionnaires.
Methods
2,353 ADPKD patients (age >18 years) were invited to participate in a survey. Assessments included: ADPKD-PDS measuring severity and impact of dull pain (chronic ache), sharp pain (acute), and discomfort (chronic fullness/pressure) over the last 7 days via 20 items, and ADPKD-IS measuring physical, emotional, and fatigue impact over the last 2 weeks via 18 items. Age, gender, ethnicity, chronic kidney disease (CKD) stage, and time since ADPKD diagnosis were collected.
Results
For 289 qualified respondents mean age was 48.8 years (SD +12.3), 80.2% were female, and CKD stage broadly distributed: CKD Stage 1 (27.3%), CKD Stage 2 (21.1%), CKD Stage 3 (30.4%), CKD Stage 4 (11.4%), CKD Stage 5 (9.6%). Mean Scores for ADPKD-PDS and -IS are reported in the table below.
Conclusion
Patient burden starts early in disease with differentiation between CKD stages. Results follow clinically expected patterns where events triggering sharp pain (eg, cyst burst/infection) are rare and intermittent but chronic pain is more constant due to growing kidneys. Clinical significance of these scores needs further evaluation.
| Mean at Baseline (SD) | CKD 1 (n=79) | CKD 2 (n=61) | CKD 3 (n=88) | CKD 4 (n=33) | CKD 5 (n=28) | Total (N=289) | |
| ADPKD-PDS 1=none/not at all - 5=extreme/completely | |||||||
| Pain Severity | Overall | 1.9 (0.8) | 2.3 (0.9) | 2.4 (0.9) | 2.4 (0.9) | 2.7 (0.9) | 2.3 (0.9) |
| Dull | 2.1 (1.0) | 2.6 (1.0) | 2.6 (1.0) | 2.6 (1.0) | 2.8 (1.0) | 2.5 (1.0) | |
| Sharp | 1.5 (0.9) | 1.9 (1.1) | 1.9 (1.0) | 2.0 (1.0) | 2.1 (1.1) | 1.8 (1.0) | |
| Discomfort | 1.9 (1.1) | 2.5 (1.1) | 2.7 (1.1) | 2.5 (1.1) | 3.3 (0.9) | 2.5 (1.2) | |
| Pain Interference | Dull | 1.4 (0.8) | 1.9 (1.0) | 2.0 (1.0) | 2.2 (1.0) | 2.4 (1.0) | 1.9 (1.0) |
| Sharp | 1.3 (0.8) | 1.6 (1.1) | 1.7 (1.2) | 1.7 (1.2) | 1.9 (1.4) | 1.6 (1.1) | |
| Discomfort | 1.5 (0.9) | 1.8 (0.8) | 2.0 (0.8) | 2.2 (1.1) | 2.7 (0.9) | 1.9 (1.0) | |
| ADPKD-IS 1=not impacted/bothered - 5=extremely impacted/bothered | |||||||
| Physical | 1.7 (0.9) | 2.2 (1.0) | 2.4 (1.1) | 2.6 (1.1) | 3.2 (1.0) | 2.2 (1.1) | |
| Emotional | 2.0 (0.8) | 2.3 (1.1) | 2.4 (1.0) | 2.6 (1.0) | 2.9 (1.0) | 2.3 (1.0) | |
| Fatigue | 2.2 (1.1) | 2.8 (1.3) | 2.8 (1.2) | 3.3 (1.3) | 3.7 (1.1) | 2.8 (1.3) | |
Funding
- Commercial Support – Otsuka Pharmaceutical Development & Commercialization, Inc.