Organizational Guide for SDS Patient Care
Organizational Guide for
for Shwachman-Diamond Syndrome Patient
With a diagnosis of Shwachman-Diamond Syndrome, there are several important documents and records that should be organized to keep track of a patient’s care. A well-organized system for storing and filing these documents, whether hard-copy or electronic, is important for the long-term care of the patient.
A Binder for Organizing Patient Care
Shwachman-Diamond Syndrome Foundation suggests creating a binder (or an electronic system) to manage your SDS care. In this binder, important medical paperwork should be included such as the patient information sheet, medical team contact information, a log of appointments, a list of medications, a monthly calendar to mark appointments/therapy sessions, a log of lab results, bone marrow biopsy procedures, x-rays and CT scans, and any other pertinent information to meet your specific needs. We recommend purchasing a heavy 3-ring binder and tabs/folders to organize your binder.
We have provided some forms that you can print out to get you started in creating your own care binder.
- Slide this sheet in the front of your binder
- Fill out this form to provide information about the SDS patient.
- In this section you can also include business cards, emergency room instructions, etc.
- On this form, fill out a monthly calendar to include appointments, therapy sessions, reminders of when to administer medications, lab draws, etc.
- In this section you can also include doctor notes, a list of questions asked/answers received, or other reports received from your appointments.
- In this section you can also include other pharmacy and prescription information.
- In this section, you can include copies of all CBCs and other lab results (vitamin levels, liver enzymes, bone marrow biopsy results, etc.)
- In this section, you can also include feeding schedules, information from nutritionists, high-calorie recipes, supplement information, growth hormone information, etc.
- In this section, log the dates and information regarding bone marrow biopsy procedures. Also, attach any reports if available.
- In this section, log pertinent information relating to transfusions that the SDS patient needs. Also, attach any reports if available.
- In this section, you can log all x-rays and CT scans, as well as include any reports if available.
*Organize your binder to meet the specific needs of the SDS patient.
The binder guide above is available electronically within a Microsoft Excel spreadsheet in which each section of the binder is located in the tabs of the spreadsheet. Download the spreadsheet: SDS Patient Care Spreadsheet.