SF-36^® Health Assessment

The SF-36^® is a scientifically validated survey instrument for persons 14 years of age or older designed to measure overall physical and mental health status from the patient's perspective. When applied over time to both individuals and groups, health status outcomes can be monitored as well. The survey instrument, consisting of 36 items (questions), is self-administered and usually requires less than 10 minutes to complete.

The SF-36^® grew out of the Medical Outcomes Study (Stewart, Ware, et. al., 1992). It has become the most widely accepted and utilized standard measure of generic health status and QOL currently in existence.

One advantage of utilizing the SF-36^® is that it assesses health concepts that are not age, disease, or treatment-specific. Responses can thus be compared to normative data assessing QOL outcomes most directly affected by disease and treatment. Therefore, the SF-36^® provides a common yardstick to compare your patients with others suffering from chronic diseases sampled from the general population.

The Patient Survey Process
It is recommended that patients are surveyed according to the Minimum Recommended Schedule of Assessments. It will be important to keep track of when your patient was last surveyed so you will know when he/she is due for their next survey.

Please be sure the patient is fluent in reading the language used in the survey. If not, do not proceed with administering the survey. The translations are available in the Fabry Registry Materials Section. If the language is not listed please contact the Fabry Registry staff to see if there is a translated survey available in the patient’s native language.

Download Quality of Life (SF-36®) (PDF)

The self-administered surveys may be conducted when the patient is in the clinic/office or through the mail. If conducted in the clinical setting, then administer the survey before the patient sees the physician or is asked about other health questions to avoid potentially influencing the patient’s answers.

For patients who cannot complete the form themselves, interview the patient reading all questions as written and slowly enough for him or her to consider each statement and respond. Record responses, but avoid extended discussions of the question or response.

After the patient has completed the survey, check to be sure that all questions have been answered, and that only one answer has been provided to each question. If a response is incomplete or unclear, ask the patient to complete the question or clarify his or her choice. If the patient makes an error while completing the survey, the mark must be lined through or completely erased and the correct mark filled in and prominently noted.

A QOL Assessments Manual for the U.S. English Version is provided for use in the U.S. and as an example for review in other countries.

Download Quality of Life (QoL) Assessments Manual (PDF)

This guide provides the necessary and appropriate instruments to prospectively collect such patient-centered information to help assess health status and progress over time.

For more information on performing Quality of Life Assessments, please contact the Fabry Registry.