Cystinosis Post Transplant Questionaire

Reason for questionnaire: There is some concern that many patients with cystinosis who have received kidney transplants are not on any cysteamine therapy and are not receiving any specialized care for their cystinosis, apart from routine post transplant care. The questionnaire (retrospective data collection) is designed to assess the extent of this problem (management post transplant and degree of extra renal organ involvement) by directed questioning of adults and children who have received kidney transplants for cystinosis. We hope to be able to improve public awareness of cystinosis and its care and management with your help. The data from this questionnaire will be anonymous in the interest of patient confidentiality. Your help and time to complete this questionnaire is greatly appreciated. , Jean Hobbs Hotz Assistant Professor in Pediatric Nephrology President of the Cystinosis Foundation Stanford University 2516 Stockbridge Drive Suite H5, 703 Welch Road Oakland, CA 94611

Sincerely,

What is your Age?

Date of Renal Transplant?

Your Weight at most recent transplant visit?

Your Height at most recent transplant visit?

Were you on Cystagon pre-transplant?	Yes/No

What is the main problem with taking Cystagon?

Are you on Cystagon Post-Transplant? If yes, Your Dose? Dose interval of Cystagon?	Yes/No Every (place an X) 12 hours 8 hours 6 hours

Are you measuring white blood cell cystine levels? Most Recent Level? Frequency of Test?	Yes/No

Have you received Growth Hormone? Post-Transplant?	Yes/No Yes/No

How is your growth compared to your peers?

How frequently are thyroid function tests checked post-transplant?

Have you been seen by an Opthalmologist in the last 12 months? If Yes: Visual Acuity? Frequency of Visits?	Yes/No

Are you on Cysteamine eye drops? Used how Frequently?	Yes/No

Have you been seen by a Neurologist? Frequency of Visits?	Yes/No

How have you done or are you currently doing in school

. Do you have swallowing difficulties? Do you have muscle wasting?	Yes/No Yes/No

Have you had seizures?	Yes/No

For teenage girls: at what age did you start menstruating?	Yes/No

How is your appetite? Any vomiting, nausea or diarrhea on a regular basis?

Have you had a Sonogram of the liver or spleen?	Yes/No

. How much do you know about Renal transplantation and the chance of damage to the new kidney?

Is there a specialized clinic for Cystinosis for your care?	Yes/No

Do you feel your needs are being met for your medical condition? If not, how would you like to see it improved ?

CYSTINOSIS POST TRANSPLANT QUESTIONAIRE