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1 Enrico Verrina has documented that he has no relevant financial relationships to disclose or conflict of interest to resolve.

2 Should we always dialyze and transplant mentally disabled patients? Medical and economical aspects Dialysis Enrico Verrina Dialysis Unit, G. Gaslini Children s Hospital Genoa, Italy ISTITUTO G. GASLINI

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4 Dionne, d Agincourt- Canning. Pediatr Nephrol, 2014

5 28% COMORBIDITIES IN CHRONIC PEDIATRIC PERITONEAL DIALYSIS PATIENTS: A REPORT OF THE INTERNATIONAL PEDIATRIC PERITONEAL DIALYSIS NETWORK Neu AM et al. Perit Dial Int 2012; 32:

6 Peritoneal dialysis in children. In: Pediatric Nephrology 7th edition, Springer (in press)(in press) Table 3. Absolute and relative contraindications to the use of chronic peritoneal dialysis in pediatric patients. ABSOLUTE CONTRAINDICATIONS Omphalocele* Gastroschisis* Bladder extrophy* Diaphragmatic hernia* Obliterated peritoneal cavity RELATIVE CONTRAINDICATIONS Inadequate living situation for home dialysis Lack of appropriate caregiver Impending/recent major abdominal surgery History of major peritoneal injury * To be reconsidered after reparative surgery

7 Table 4. Patient and family preparation for home peritoneal dialysis Patient and family preparation for home peritoneal dialysis should: Start well before dialysis initiation Involve a specialized, multidisciplinary team Make use of appropriate written information and other teaching aids Encourage contacts with similar-aged children on home dialysis Include a home visit to ensure safe delivery of home dialysis, and a liaison with the nursery/school/college and the family doctor Include a nutritional assessment and the evaluation of any clinical conditions that could be susceptible of surgical correction before, or at the moment of peritoneal catheter placement Peritoneal dialysis in children. In: Pediatric Nephrology 7th edition, Springer (in press)

8 Chronic dialysis in mentally disabled pediatric patients (13 pediatric patients)

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10 CHRONIC PERITONEAL DIALYSIS IN CHILDREN WITH SPECIAL NEEDS OR SOCIAL DISADVANTAGE OR BOTH: CONTRAINDICATIONS ARE NOT ALWAYS CONTRAINDICATIONS Aksu N et al. Perit Dial Int 2012; 32: a Average patient months between episodes.

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12 Chronic peritoneal dialysis (CPD) in mentally disabled children Mental disability can be regarded as a contraindication (or relative contraindication) for CPD treatment because of the higher risk of infectious complications caused by the patient s difficulty with maintaining personal hygiene and compliance In pediatric patients undergoing CPD, the need for the exchanges to be performed by another person is highly important and could lead to a compromised quality of life of the caregivers In children CPD is almost always performed by parents, who usually are active, very committed and dedicated participants in the care plan Mental disability in the CPD child further increases dependence, and hence, parents are often heavily constrained by family commitments Therefore, primary caregiver for a patient who is not self-sufficient in a CPD program is more exposed to burnout syndrome Increased well-being in the child along with daily treatment may be reflected in a gradual improvement in parental emotional status and in a better tolerance of the burden of care

13 Chronic hemodialysis (HD) in mentally disabled children Mentally retarded children are often not able to remain quiet for the 3 4 hours required to complete a HD treatment Troubles in managing the vascular access (especially an A-V fistula) Mentally retarded children can be prepared for accepting HD treatment by a graduated approach with the help of play therapists and psychologists The experience of the team is an important feature

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15 Clinical case (I) G.G., male, 17 years old Lowe syndrome: mental retardation, severe muscolar hypotonia, congenital cataracts ESKD: - parents refusal to perform PD (inadequate social and home situation; another affected child) - distal A-V fistula (right arm) - start of HD treatment (2 sessions/week) Marked psychomotor agitation and irritability no way to keep him quiet along the HD session

16 Clinical case (II) Protocol of narcosis induction for the time of the HD session: Induction: Propofol (Diprivan) 2 mg/kg BW i.v. Maintenance: Propofol (Diprivan) 0.5 mg/kg BW/hour until the end of the HD session - BP, HR, RR and SpO2 monitoring Awakening in 5-10 min after infusion discontinuation No side effects or other complications Transfer to PD after 3 months, following parents PD training, financial and logistic support to the family, and a home visit program implementation

17 Conclusions Home PD can be the dialysis modality of choice for mentally disabled children with very committed caregiver(s), already experienced in the care of an extremely dependent child In patients for whom PD is contraindicated, HD can be performed, even requiring a great organizational effort by a well trained multidisciplinary team Through such dedicated and demanding programs, medical and technical results that are not different from those obtained in general pediatric dialysis population can be achieved in these medically complex and extremely fragile children

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