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Transition -final-Cystinosis
- 1. Nakysa Hooman Professor Pediatric Nephrology Iran University of Medical Sciences
- 2. None
- 4. Age Classification (N:14; Male:43%)
- 5. Transition of Adult Iranian Cystinosis
- 6. Pre-transition stage Planning/introduction to the transition Patient education Transfer
- 8. • 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
- 9. • Polypharmacy • Side effects of drugs • Affordable (High price) • Sustained Availability • Slow not stop • Accessibility • Insurance • Not concern by authority
- 10. • Age:21 yrs • Educated • Unemployed Ready for Transfer Poor body imaging Many medications FEEL DOWN Suicidal Thought ND
- 11. • 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
- 12. •Age-20 yrs •Diploma •Fiancée •Not ready for transfer •Age limit in children hospital RGh
- 13. • 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
- 14. • 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
- 16. Disease Medication lifestyle habit relation with health care Parent Readiness Pediatric Nephrologist
- 18. 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
- 19. 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
- 20. THANKS to Patients and Physicians Cystinosis Family
Editor's Notes
- Age-18yr Poor Wt gain-age 3 mon Dx – age 5 yr ( BMA) Renal Tx – age 8 yr ( Mother) FH- parents divorced Education- school – bullying Short stature ( HT-106cm)
- Age-18yr Poor Wt gain-age 3 mon Dx – age 5 yr ( BMA) Renal Tx – age 8 yr ( Mother) FH- parents divorced Education- school – bullying Short stature ( HT-106cm)
- Aim of question: Measures for improving therapeutic adherence
- Aim of question: Education of health care provider is prerequisite for transition