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Kidney Week

Abstract: TH-PO776

Perspectives of Pakistani Dialysis Patients on the Financial and Psychological Impact of Dialysis, Dialysis Decision Making, Prognostic Understanding, Use of Alternative Medicine, and End-of-Life Care

Session Information

Category: Geriatric Nephrology

  • 1200 Geriatric Nephrology

Authors

  • Malik, Sheza, Rochester General Health System, Rochester, New York, United States
  • Anwar, Ayesha, Allam Iqbal Medical College, Lahore, Punjab, Pakistan
  • Allen, Rebecca Jane, Mount St. Joseph University, Cincinnati, Ohio, United States
  • Zaki, Abdullah, Shifa International Hospitals Ltd, Islamabad, Islamabad, Pakistan
  • Saeed, Fahad, University of Rochester, Rochester, New York, United States
Background

With the increasing prevalence and mortality of end-stage kidney disease (ESKD) in developing countries, it is imperative to examine these patients' experiences with dialysis care and their attitudes toward end-of-life decisions.

Methods

Using convenience sampling methodology, we surveyed 221 patients (221/245, 90% response rate) receiving dialysis at five different dialysis facilities in Pakistan. The survey comprised 52 questions in Urdu to seek patients’ perspectives on the impact of financial difficulties on the receipt of regular dialysis, the psychological impact of chronic dialysis, dialysis decision making, prognostic understanding, use of alternative medicine, and preparation for end-of-life care. Survey questions were administered orally to all participants.

Results

The mean age of the participants was 46.3±9.1 years, and 97.7% were Muslims. About 72% were married. Fifty-eight percent reported difficulty managing their finances due to the cost of dialysis. In addition, nearly 57% suggested establishing free dialysis facilities. A majority (77%) expressed a lack of understanding and knowledge about chronic kidney disease (CKD) and the available treatment options for end-stage kidney disease. Some (12%) used alternative medicine to treat their CKD. Nearly two-thirds (75%) cited faith as their greatest motivation for continuing with dialysis despite the adverse psychological effects of dialysis (29%) and feelings of social isolation (29%). The majority (81%) felt their prognosis was >10 years. Patients reported feeling almost evenly split on choosing between a comfort-based only (39%) and a life-prolonging approach (41%), while the remaining 20% have not thought about it. Most patients did not talk to anyone about their end-of-life care (91%) and did not have a living will (96.4%).

Conclusion

Our study highlights major lapses in the care of Pakistani patients receiving maintenance dialysis and calls for greater awareness of kidney disease among the general population and more financial and psychosocial support for dialysis patients. Amidst major financial challenges that these patients face, honest yet compassionate prognostic conversations are still needed to facilitate end-of-life planning.