Cystinosis patient survey data analysis final report
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Cystinosis Patient Survey Data Analysis Final Report. August 30, 2010. Scope of Research. 1. Partnership initiated with CRN to reach patients and families with cystinosis. 2. JPA fielded survey via online, mail and phone calls – July 17 through present

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Cystinosis Patient Survey Data Analysis Final Report

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Cystinosis patient survey data analysis final report

Cystinosis Patient SurveyData Analysis Final Report

August 30, 2010


Scope of research

Scope of Research

  • 1. Partnership initiated with CRN to reach patients and families with cystinosis.

  • 2. JPA fielded survey via online, mail and phone calls – July 17 through present

  • 3. Total responses to date: 192

    • US = 162

    • Ex-US = 21

    • Unknown = 9

* The following analysis is based on US surveys

Cystinosis Patient Survey Preliminary Data Analysis


Key takeaways

Key Takeaways

  • While the vast majority (94%) of cystinosis patients have experienced crystal formation, only 61% currently use the eye drops.

  • For those that aren’t using the drops, it is primarily because they haven’t been recommended or the patient doesn’t experience symptoms; Currently, price is not a major factor in use of the drops.

  • The primary source of the eye drops is NIH Eye Clinic.

  • Most patients start using the drops over 1 year after cystinosis diagnosis. Compliance in terms of daily use and storage varies.

  • The majority (89%) of patients have health insurance, but household income varies widely among patients and families.

Cystinosis Patient Survey Preliminary Data Analysis


Cystinosis diagnosis

Cystinosis Diagnosis

3.4 yearsAverage ageat cystinosis diagnosis

PrenatalMinimum ageat cystinosis diagnosis

25 yearsMaximum ageat cystinosis diagnosis

Cystinosis Patient Survey Preliminary Data Analysis


Cystine crystal formation

Cystine Crystal Formation

Age when crystals were first identifiable:

Average age = 4.5 years

Min age = .25 years

Max age = 28 years

Only 16 respondents indicated that they know their crystal score:

Min score = 1

Max score = 8

Cystinosis Patient Survey Preliminary Data Analysis


Eye drop usage

Eye Drop Usage

Cystinosis Patient Survey Preliminary Data Analysis


Eye drop usage1

Eye Drop Usage

  • Other includes quality of life issues:

  • “Stink”

  • “Need to use too often”

  • “Uncomfortable”

  • “Hassle”

  • “Symptoms are minimal”

Respondents selected multiple responses.

Cystinosis Patient Survey Preliminary Data Analysis


Treatment continuum

Treatment Continuum

Cystinosis Patient Survey Preliminary Data Analysis


Eye drop prescribers

Eye Drop Prescribers

  • Other includes specific locations and doctors:

  • NIH

  • Dr. Gahl

  • Dr. Kaiser

  • Dr. Matalon

Cystinosis Patient Survey Preliminary Data Analysis


Method of distribution

Method of Distribution

  • Other includes:

  • Mayo Clinic

  • S&R Drug Company in Kirbyville, TX

Respondents selected multiple responses.

Cystinosis Patient Survey Preliminary Data Analysis


Eye drop compliance

Eye Drop Compliance

Cystinosis Patient Survey Preliminary Data Analysis


Eye drop storage

Eye Drop Storage

Cystinosis Patient Survey Preliminary Data Analysis


Eye drop effectiveness

Eye Drop Effectiveness

Cystinosis Patient Survey Preliminary Data Analysis


Commercially available eye drops

Commercially Available Eye Drops

Cystinosis Patient Survey Data Analysis: Preliminary


Kidney transplants

Kidney Transplants

Age at transplant

Average age = 14

Min age = 5

Max age = 56

Cystinosis Patient Survey Preliminary Data Analysis


Health insurance status

Health Insurance Status

Respondents selected multiple responses.

Other primarily includes state-run health programs, e.g., Mass Safety Net, Illinois Public Aid

Cystinosis Patient Survey Preliminary Data Analysis


Demographic information

Demographic Information

Cystinosis Patient Survey Preliminary Data Analysis


Patient location n 162

Patient Location (n=162)

VT 2

ME 1

WA 4

MO 2

MN 4

NH 2

NY 14

OR 2

MA 6

WI 6

MI 7

CT 2

PA 7

NJ 1

IA 4

OH 7

MD 2

NE 2

DE 1

IN 4

WV 2

IL 11

VA 3

UT 5

CO 1

CA 6

KS 1

KY 5

MO 1

NC 5

TN 3

SC 4

AZ 6

OK 2

GA 7

MS 2

AL 4

TX 8

FL 7

Cystinosis Patient Survey Preliminary Data Analysis


Cystinosis information resources

Cystinosis Information & Resources

Respondents selected multiple responses.

Cystinosis Patient Survey Preliminary Data Analysis


Cystinosis information resources cont

Cystinosis Information & Resources (cont.)

Respondents selected multiple responses.

Cystinosis Patient Survey Preliminary Data Analysis


Cystinosis patient survey data analysis final report

Cystinosis Information & Resources (cont.)

Respondents selected multiple responses.

Cystinosis Patient Survey Preliminary Data Analysis


Jones public affairs contact

Jones Public Affairs Contact

  • Please direct any questions to:

    • Kelly Butterworth

    • 202.591.4052

    • [email protected]

Cystinosis Patient Survey Data Analysis: Preliminary


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