Dear SBSF Member,
Are you a parent, child, or teen? 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 teen. Or supervise the child or teen 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 sub-population is pediatric patients with intestinal failure that are dependent on parenteral support (we will create one for EN/HEN and with No PN/EN/HPN/HEN.
This new instrument 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.