What is the Patient Impact Study?

We would like to invite you to help us support the development of a new SBS patient-reported conclusion survey for patients diagnosed with short bowel syndrome (SBS) in the pediatric ages. We encourage the parents to fill out the survey as a proxy to their child. Or supervise the child if they want to do it themselves. All information will be private and the data will be used to contribute to the final report. No identifying questions will be asked of you, such as address, phone, email, if your filling out the survey please only put your last name and age range.

The target SBS-subpopulation is patients with intestinal failure that are dependent on parenteral support. This new instrument to be developed by the Short Bowel Syndrome Foundation as an independent research study.  There is no collaboration with outside companies or pharmaceuticals from the SBS Industry. The questions posted below aims to understand the impact SBS has on patients’ daily life. Given your background and experience of living with SBS, we would very much welcome your insights/input into the various aspects needed to be captured in this new SBS study we have created.

Question Title

* 1. Where does your child or teen fall in age?

Question Title

* 5. What does your child or teen think, also your opinion as a parent: What do you think is the most difficult aspect of living with SBS?

Question Title

* 6. How does your SBS impact your daily life/everyday activities? For your Child or Teen?

Question Title

* 7. How does your SBS, TPN, or Both, impact your child or teens sleep?

Question Title

* 8. How does your SBS, TPN, or Both, impact your grade-high school education?

Question Title

* 9. How does your child or teens SBS impact their activities at home?

Question Title

* 10. Does your child or teen have issues with socialization, family, and friends?

Question Title

* 11. What do you as a parent: perceive to be working well with the medical treatments for SBS that are available for you? (Please disregard PN/HPN)

Question Title

* 12. What do you as a parent think does not work well with the current SBS treatment options?

Page1 / 1
 
100% of survey complete.

T