Screen Reader Mode Icon

ALGS Adult Needs Assessment

Thank you for taking the time to share your Adult ALGS journey with us. Your answers will assist with developing standards of care and resource materials for all ALGS Adults. Your experiences are critical so that we have a comprehensive understanding of the impact of Alagille Syndrome.

Question Title

* 1. Please add your contact information below. If you wish to remain anonymous, your survey answers will still be included in our research and planning. 

Question Title

* 2. Are you:

Question Title

* 3. What country do you currently reside in?

Question Title

* 4. What is your gender?

Question Title

* 5. What is your age group?

Question Title

* 6. What is your current marital status?

Question Title

* 7. What is your current level of education?

Question Title

* 8. What is your HOUSEHOLD annual income?

Question Title

* 9. What is your PERSONAL annual income?

Question Title

* 10. What age were you diagnosed with Alagille Syndrome?

Question Title

* 11. How were you diagnosed?

Question Title

* 12. How do you perceive your particular Alagille Syndrome?

Question Title

* 13. Has anyone in your family ever died from ALGS?

Question Title

* 14. Check all that apply. My current medical involvement generally includes:

Question Title

* 15. Please select any of the following signs/symptoms you experience as a consequence of your rare disease.

Question Title

* 16. Has Alagille Syndrome caused any physical differences that affect your appearance?

Question Title

* 17. Do these physical differences from ALGS bother you?

Question Title

* 18. Do you have children with Alagille Syndrome?

Question Title

* 19. Your Alagille child is:

Question Title

* 20. Do any of your children have a different medical condition, syndrome, or disease other than Alagille Syndrome?

Question Title

* 21. Have you been told there is a 50/50 chance your Alagille Syndrome could be passed down to your biological children?

Question Title

* 22. Did Alagille Syndrome influence your decision to have or not have biological children?

Question Title

* 23. Did Alagille Syndrome impact your ability to have biological children? (i.e., difficulty conceiving, miscarriage, etc.)

Question Title

* 24. Did your doctor ever discuss fertility and childbirth with you?

Question Title

* 25. Do you feel more education and resources on this topic should be available for adults with Alagille Syndrome? If so, what information would be helpful or necessary?

Question Title

* 26. What is your current employment status?

Question Title

* 27. Please select the number of hours of paid employment you work each week.

Question Title

* 28. Has Alagille Syndrome impacted your ability to earn income?

Question Title

* 29. Do you feel Alagille Syndrome has impacted your ability to perform tasks at work? If so, please describe.

Question Title

* 30. Please select the option that best describes your current health insurance coverage.

Question Title

* 31. Does your health insurance cover mental health care?

Question Title

* 32. My out-of-pocket expenses for medical care limit the care I am able to receive (i.e. doctor's appointments, tests, scans, surgery, physical therapy, etc):

Question Title

* 33. My out-of-pocket costs for prescriptions limit the medication I use:

Question Title

* 34. Has having Alagille Syndrome caused you to seek food assistance benefits?

Question Title

* 35. Has having Alagille Syndrome caused you to seek financial assistance resources?

Question Title

* 36. How many specialists do you typically see in a year to manage your Alagille Syndrome?

Question Title

* 37. Please select any of the health care professionals that are currently involved in helping you manage your Alagille Syndrome

Question Title

* 38. How would you rate the knowledge of Alagille Syndrome of your specialists?

Question Title

* 39. Are any of these health care professionals you see based in a teaching hospital (affiliated with a university)?

Question Title

* 40. How many hours per month do you typically travel to see specialists for your Alagille Syndrome?

Question Title

* 41. Do your specialists have a standard of care specifically developed for Alagille Syndrome?

Question Title

* 42. Have you had surgery related to your Alagille Syndrome?

Question Title

* 43. Please describe the amount of care you typically require during an average day.

Question Title

* 44. Do you have a pet?

Question Title

* 45. Do you feel having a pet improves your well-being?

Question Title

* 46. Is your pet a service animal?

Question Title

* 47. How often do you feel isolated/lonely due to Alagille Syndrome?

Question Title

* 48. Does living with Alagille Syndrome affect your relationships with others?

Question Title

* 49. Does living with Alagille Syndrome affect your romantic relationships?

Question Title

* 50. Does living with Alagille Syndrome affect your professional relationships?

Question Title

* 51. Does living with Alagille Syndrome affect your friendships?

Question Title

* 52. Do you worry about the uncertainty of your future related to your health care?

Question Title

* 53. Where do you seek support? Check all that apply

Question Title

* 54. Have you ever personally met another individual with Alagille Syndrome outside of your own family?

Question Title

* 55. Have you met new friends, virtually or in person, who have Alagille Syndrome via a support group?

Question Title

* 56. Have you met new friends who have Alagille Syndrome via a patient advocacy organization?

Question Title

* 57. Have you met new friends via a hospital system?

Question Title

* 58. Do you actively raise awareness and advocate for your disease?

Question Title

* 59. What would you most like to see for adults with Alagille Syndrome?

Question Title

* 60. What are potential solutions you think would be helpful to the challenges you experience living with Alagille Syndrome?

Question Title

* 61. Do you:

Question Title

* 62. Do you struggle with addiction?

Question Title

* 63. Have you had an organ transplant?

Question Title

* 64. Are you currently listed for a transplant?

Question Title

* 65. Have you met with a transplant specialists to discuss a potential need for a transplant?

Question Title

* 66. Do you worry about your financial situation?

Question Title

* 67. Do you worry about access to medical care?

Question Title

* 68. Do you worry about access to medications?

Question Title

* 69. Have you ever been bullied/teased about your appearance due to Alagille Syndrome?

Question Title

* 70. Is your family:

Thank you again for taking the time to share your Adult ALGS journey with us. We encourage you to participate in the survey ALGSA Measuring What Matters which we will use for our upcoming virtual roundtable meeting with families, clinicians, researchers and biotech. Your experiences are critical so that we have a comprehensive understanding of the impact of ALGS. 

You can link to the survey here: https://www.surveymonkey.com/r/ALGSAMeasuringWhatMatters.
0 of 70 answered
 

T