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Transition -final-Cystinosis

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we show you the issues that concern cystinosis patients

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Transition -final-Cystinosis

  1. 1. Nakysa Hooman Professor Pediatric Nephrology Iran University of Medical Sciences
  2. 2. None
  3. 3. >=18yrs: 7% 93% Adult Iranian Cystinotic Patients (N-195)
  4. 4. Age Classification (N:14; Male:43%)
  5. 5. Transition of Adult Iranian Cystinosis
  6. 6. Pre-transition stage Planning/introduction to the transition Patient education Transfer
  7. 7. • AGE-27 yrs • PMH DX- age 3 yrs ( Switzerland) RTX- age 6 yrs NO Cysteamin Usage ( poor compliance/ unawareness) Corneal Tx – twice • Education- BSc. Of Tourism • PHEx – Muscle wasting , (wheelchair) – unable to swallow(PEG) – Unable to speak SB
  8. 8. • Polypharmacy • Side effects of drugs • Affordable (High price) • Sustained Availability • Slow not stop • Accessibility • Insurance • Not concern by authority
  9. 9. • Age:21 yrs • Educated • Unemployed Ready for Transfer Poor body imaging Many medications FEEL DOWN Suicidal Thought ND
  10. 10. • Age-18 yrs • PMH – Dx :age 5 yr ( BMA) – Renal Tx : age 8 yr ( Mother) • FH – parents divorced • Education – school avoidance • bullying by classmates –Short stature (HT-106cm) –Bad breath, skin odor –Feeble –Photophobia Footballer M
  11. 11. •Age-20 yrs •Diploma •Fiancée •Not ready for transfer •Age limit in children hospital RGh
  12. 12. • Age-29 yrs • PMH – Dx :age 3 yr • (Supervised by Prof Ghal, USA) – Renal Tx : age 12 yr ( Mother) – Heart surgery: age 25 • Education: MSc in accountancy • Marital: single • Job – Accountant (for 3 yrs) – Unemployed • Social Activity – Admin of social media – Cystinosis NGO( administrator) High cost of medication Appropriate Job ShM
  13. 13. • Age-21 • PMH – Dx-8 m – RTX-? – Severe renal osteodystrophy >> need surgery • Education – Entrance exam –late – Civil engineer – Jobless • Low income family • Marital state-Single Cost of living Cost of Medical careUncertain future Hard to find Job Ready for transfer Msh
  14. 14. Disease Medication lifestyle habit relation with health care Parent Readiness Pediatric Nephrologist
  15. 15. What of the following recommendation does NOT improve the therapeutic adherence? 1. Create a multidisciplinary medical team and case manager/coordinator 2. Promote the patient health education, the treatment benefits and the consequences of non-adherence 3. Identify any risk factors affecting adherence and apply corrective measures whenever possible 4. Schedule irregular appointments
  16. 16. What is a major obstacle to transition despite of patient readiness? 1. Short statue of cystinosis patients 2. Depression among patients 3. Unawareness of health care provider 4. Financial and employment concern
  17. 17. THANKS to Patients and Physicians Cystinosis Family

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