2023 NE Needs Assessment Question Title 1. To ensure that you are receiving the most up to date and accurate information from us, please provide us with your current contact information (name, phone, address, email). Question Title 2. What is your relationship to the person diagnosed with a blood disorder? Please select all that apply: Self Parent Spouse Child Grandparent Aunt/Uncle Other (please specify) Question Title 3. How do you describe yourself? Please select all that apply: White or Caucasian Black or African American Native American or Alaska Native Native Hawaiian or Pacific Islander Prefer Not to Answer Other (please specify) Question Title 4. Are you Hispanic or Latino? Yes No Prefer not to answer Question Title 5. What is the primary language spoken in your home? English Spanish French Prefer not to answer Other (please specify) Question Title 6. What is the highest level of education that you have completed? Less than a high school degree High school degree or GED Some college Associate degree Bachelor's degree Graduate degree Prefer not to answer Question Title 7. What is your current employment status? Select all that apply: Employed Part Time Employed Full Time Unemployed and looking for work Unemployed and not looking for work Student Retired Homemaker Self Employed Unable to work Prefer not to answer Other (please specify) Question Title 8. Which blood disorder affects you or your family? Hemophilia A Hemophilia B Hemophilia C von Willebrand Disease Platelet Disorders Sickle Cell Other (please specify) Question Title 9. If you selected Hemophilia A, B, or von Willebrand Disease, have you or your family member(s) been diagnosed with an inhibitor? Yes No Not Applicable Question Title 10. Please list the family members in your household that have been diagnosed and how they are related to you. List yourself if you are affected. Question Title 11. Who is the main healthcare provider that treats your bleeding disorder? University of Nebraska Medical Center (UNMC) Children's Hospital A hematologist (bleeding disorder specialist) at another location Primary care provider/pediatrician Other (please specify) Question Title 12. What was your total combined family income last year? Under $20,000 $20,000 - $34,999 $35,000 - $49,999 $50,000 - $74,999 $75,000 - $99,999 $100,000 + Prefer not to answer Question Title 13. In the past year, have you or other family members in your household been unable to get or pay for any of the following? Select all that apply: Food Utilities (electricity, water, heat) Phone Medical insurance Bleeding disorders medication Other medications Appointments with healthcare providers Clothing Child care Housing My family did not have unmet needs Other (please specify) Question Title 14. Do you or your family currently struggle with obtaining one of the following? Select all that apply: Work Transportation Health insurance Not Applicable Other (please specify) Question Title 15. How many chapter events have you attended 0 1 2 3 4 5 or more Question Title 16. Do you and your family feel welcome at Chapter events? Yes No Sometimes Question Title 17. If you answered sometimes or no, what could we do to make you feel more welcome? Question Title 18. In what areas could the Chapter improve? Question Title 19. In what areas are the Chapter doing well? Question Title 20. What has prevented you and your family from attending Chapter events in the past? Select all that apply: Finances Child care Not Interested Health Concerns Location Transportation Conflicting Obligations Not Applicable Other (please specify) Question Title 21. How does your household currently receive Chapter information? US Mail Email Facebook Instagram Twitter Texts Newsletters Question Title 22. How would you like to receive invitations to events? Question Title 23. What service might we offer that is not currently available? Question Title 24. Has the Covid-19 pandemic impacted your family in any of the following ways? Select all that apply: Income loss Healthcare coverage loss Housing loss Poor mental health Covid diagnosis Covid hospitalization Quarentine due to exposure to Covid Family wasn't impacted Other (please specify) Question Title 25. How often are you able to see a healthcare provider (doctor or nurse) that is knowledgeable in treating the blood disorder in your family? Always Usually Sometimes Rarely Never Question Title 26. In a blood disorder emergency, how often are you able to see a healthcare provider (doctor or nurse) that is knowledgeable in treating the person in your family that is affected by a blood disorder? Always Usually Sometimes Rarely Never Question Title 27. How many blood disorder emergencies have you experienced in the past 12 months? 0 1 - 2 3 - 4 5 or more Question Title 28. Do you feel that you have a good understanding of the way your insurance works? Always Usually Sometimes Rarely Never Question Title 29. Over the past 12 months, how often have these problems impact impacted getting blood disorder medication for your family? Always Usually Sometimes Rarely Never Cost Cost Always Cost Usually Cost Sometimes Cost Rarely Cost Never Insurance issues Insurance issues Always Insurance issues Usually Insurance issues Sometimes Insurance issues Rarely Insurance issues Never Doctor or nurse wants me to take a different medication Doctor or nurse wants me to take a different medication Always Doctor or nurse wants me to take a different medication Usually Doctor or nurse wants me to take a different medication Sometimes Doctor or nurse wants me to take a different medication Rarely Doctor or nurse wants me to take a different medication Never Question Title 30. How often do you have someone to talk to for support in a time of need? Always Usually Sometimes Rarely Never Question Title 31. For the person(s) with the blood disorder, what has been the hardest or most frustrating part of dealing with the disorder? Question Title 32. For the person(s) who are taking care of or living with the person who has the blood disorder, what is the hardest and most frustrating part of dealing with the disorder? Question Title 33. Additional Information (Optional) – Please use this space to provide any additional information that you would like to share with us. Done