Peritoneal Dialysis in Developmental Disability

Introduction: Although not well described, peritoneal dialysis (PD) should be considered for adults patients who cannot participate in their own care. SW is a 30 yo with renal dysplasia and significant developmental disabilities (dd) due to cerebral palsy. We present our experiences as an interdisciplinary team managing SW’s care with the goal of increasing provider confidence in providing PD to patients with significant dd. Case Description: Social Work: SW is minimally verbal, requires a wheelchair and is totally dependent on her parents. Her cognitive disability impacts her ability to express what she is feeling or experiencing, even to her parents. MD: We were concerned about how SW would tolerate PD and how we would assess her well-being. Catheter was placed in the OR with careful attention to exit site location based on her kyphoscoliosis, incontinence, and need to avoid her pulling on it. SW typically sleeps well and we use a cycler program for safety and simplicity. She has had no peritonitis over 3 years. RN: Visits require parent involvement and 2-3 staff for blood draws. Care has become routine and works smoothly at home and clinic. We had initial concerns but have seen her thrive and travel with family. Dietitian: Nutrition challenges have included selective eating and meeting calorie needs. Interventions include a focused, liberalized diet and powdered phosphate binders. SW has stable weight and routine labs are favorable compared to our clinic and KDOQI guidelines (see table). Parents: We were responsible for making decisions for our daughter, we could not engage her in the process, and we could not agree on a course of action. We were paralyzed with fear because it seemed like PD required specialized training. We found a clinic that was warm, welcoming and had a very “can do” attitude. Our daughter has now been on PD for 3 years. At every turn, we have felt supported by the clinic staff. Discussion: Take aways: Interdisciplinary collaboration, including with parents, has enabled successful PD. We modified some practices to meet SW’s needs, but caring for her is not disruptive to our clinic.