Abstract: SA-PO1126
Patients' Experiences Receiving a CKD Diagnosis: Opportunities for Clarity, Empowerment, and Support
Session Information
- CKD: Patient-Oriented Care and Case Reports
October 26, 2024 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: CKD (Non-Dialysis)
- 2302 CKD (Non-Dialysis): Clinical, Outcomes, and Trials
Authors
- Bush, Leah C., University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, United States
- Rivera, Eleanor, University of Illinois Chicago, Chicago, Illinois, United States
- Schrauben, Sarah J., University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, United States
Background
Chronic kidney disease (CKD) is a highly prevalent condition, affecting >1 in 7 US adults. Advances in basic science and clinical management of CKD have improved clinical outcomes, but gaps remain in the understanding of patient experiences with the diagnosis of CKD. Such an understanding is crucial to mitigate psychological challenges experienced with receiving a CKD diagnosis and to establish the patient knowledge, agency, and support necessary for optimal patient-driven CKD management.
Methods
We conducted semi-structured interviews with patients with CKD stage 3 or 4 from nephrology clinics using an interview guide related to experiences about being diagnosed with CKD. Interviews were audio recorded, transcribed verbatim, and analyzed inductively using thematic analysis.
Results
We interviewed 30 patients. We identified 5 themes clustered around reactions to receiving a CKD diagnosis: 1) surprise, shock, and fear attributed to the unexpected nature of the diagnosis and the uncertainty about potential need for dialysis or transplant; 2) reluctance to disclose CKD diagnosis to friends and/or family given the lack of overt symptoms and stigma around having a chronic disease; 3) bidirectional relationships between CKD and mental health, in that a CKD diagnosis poses a mental health stress test, and adequate mental health is necessary for optimal CKD management; 4) lack of social support from friends and family; and 5) progression through the stages of grief toward acceptance of the diagnosis (Table).
Conclusion
Our findings describe patients’ experiences receiving the diagnosis of CKD, which informs practical recommendations for diagnosis communication, including a focus on patient empowerment and facilitating support services via the CKD care team. Opportunity also exists for greater public understanding of the role of the kidneys for overall health and for greater public familiarization with CKD.
Themes related to Receiving and Coping with CKD Diagnosis
| 1. Alarming Reaction to Diagnosis | “it was just shock… it was very sudden… It was just kind of like, where did this come from? Like what’s going to happen?” -participant #3 |
| 2. Reluctance to Disclose Diagnosis | “When you hear the words chronic and disease together - chronic, means I’m going to have this forever, and a disease, something I can’t do anything about. Of course, I didn’t tell my family. I still haven’t told them…they’d probably say, 'you have a disease?” -participant #9 |
| 3. Linkage of Mental health and CKD | "I'm scared all the time. Am I doing the right thing?" - participant #25 "I get depressed thinking about dialysis." - participant #1 |
| 4. Lack of social support | “people I thought were my friends weren't because they were afraid I was gonna ask them for something.” - participant #24 "I don't turn to anybody [for support]. I handle everything myself." - participant #6 |
| 5. Stages of Grief and Acceptance of Diagnosis | “you start accepting things for what they are, [CKD] is something that has to be managed and you can take control over it.” -participant #3 |
Funding
- NIDDK Support