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Life After Transplant Survey: Understanding your experiences with anti-rejection medications and long-term treatment regimens

Thank you for taking a few minutes to complete this survey!

We want to better understand your experience living with a transplant and taking anti-rejection medications. All responses will remain anonymous and will be de-identified before being used for research purposes. The information you share will help us better understand the challenges and unmet needs transplant recipients face, identify opportunities to improve long-term care, and inform future treatment approaches that may benefit others in the transplant community.
Section 1: Patient Profile
1.Age
2.Race/Ethnicity
3.ZIP Code
4.What organ(s) was transplanted?
5.How long has it been since your last transplant?
6.What was your original disease?
7.Name of transplant center
8.Insurance type
Section 2: Current Maintenance Therapy
9.Which anti-rejection (immunosuppressant) medication(s) are you currently taking?
Section 3: Neurotoxicity & Cognitive Symptoms (POST-TRANSPLANT)
10.After your transplant, have you experienced any of these symptoms?
Yes, daily
Yes, weekly
Rarely, monthly
No, never
Memory issues
Brain fog
Difficulty Concentrating
Word-Finding
Tremors
Headaches
Counting / Calcuating
11.How severe are these symptoms?
5 (Extremely Severe)
4
3
2
1 (Not Severe)
N/A (Not Experienced)
Memory issues
Brain fog
Difficulty Concentrating
Word-Finding
Tremors
Headaches
Counting / Calculating
12.To what extent have these symptoms affected your daily life and/or work?
5 (Extremely Severe)
4 ( Very Much)
3 (Moderately)
2 ( Slightly)
1 (Not at all)
N/A (Not Experienced)
Memory issues
Brain fog
Difficulty Concentrating
Word-Finding
Tremors
Headaches
Counting / calculating
13.When did these symptoms start?
Under 6 months post-transplant
6 months - 1 year post-transplant
1 - 2 years post-transplant
2 - 5 years post-transplant
5 - 10 years post-transplant
10+ years post-transplant
N/A (Not applicable)
Memory issues
Brain fog
Difficulty Concentrating
Word-Finding
Tremors
Headaches
Counting / calculating
14.To what extent have these symptoms affected the following areas of your life?
5 (Extremely Severe)
4 ( Very Much)
3 (Moderately)
2 ( Slightly)
1 (Not at all)
N/A (Not Applicable)
Work / School
Family / Parenting
Social Life / Relationships
Mental Health
Physical Health
Finances
Independence
Travel
15.Which symptom do you wish would go away the most?
16.What transplant medications were you on when these symptoms started?
Section 4: Emotional Wellbeing & Sleep (POST-TRANSPLANT)
17.After your transplant, have you experienced any of these symptoms?
Yes, frequently
Yes, occasionally
Rarely
No
Anxiety
Depression
Sleep Disturbance
Restlessness
Nightmares
18.How severe are these symptoms?
5 (Extremely Severe)
4
3
2
1 (Not Severe)
N/A (Not Experienced)
Anxiety
Depression
Sleep Disturbance
Restlessness
Nightmares
19.To what extent have these symptoms affected your daily life?
5 (Extremely Severe)
4 ( Very Much)
3 (Moderately)
2 ( Slightly)
1 (Not at all)
N/A (Not Experienced)
Anxiety
Depression
Sleep Disturbance
Restlessness
Nightmares
20.When did these symptoms start?
Under 6 months post-transplant
6 months - 1 year post-transplant
1 - 2 years post-transplant
2 - 5 years post-transplant
5 - 10 years post-transplant
10+ years post-transplant
N/A (Not applicable)
Anxiety
Depressions
Sleep Disturbance
Restlessness
Nightmares
21.To what extent have these symptoms affected the following areas of your life?
5 (Extremely Severe)
4 ( Very Much)
3 (Moderately)
2 ( Slightly)
1 (Not at all)
N/A (Not Applicable)
Work / School
Family / Parenting
Social Life / Relationships
Mental Health
Physical Health
Finances
Independence
Travel
22.Which symptom do you wish would go away the most?
23.What transplant medications were you on when these symptoms started?
Section 5: Other Side Effects (POST-TRANSPLANT)
24.After your transplant, have you experienced any of these symptoms?
Yes, frequently
Yes, occasionally
Rarely
No
Hair Loss
Gastrointestinal Issues (nausea, vomiting, diarrhea, constipation)
Mouth Sores
Weight Gain
Weight loss
Rashes
Leg Swelling
25.How severe are these symptoms?
5 (Extremely Severe)
4
3
2
1 (Not Severe)
N/A (Not Experienced)
Hair Loss
Gastrointestinal Issues
Mouth Sores
Weight Gain
Weight Loss
Rashes
Leg Swelling
26.To what extent have these symptoms affected your daily life?
5 (Extremely Severe)
4 ( Very Much)
3 (Moderately)
2 ( Slightly)
1 (Not at all)
N/A (Not Experienced)
Hair Loss
Gastrointestinal Issues
Mouth Sores
Weight Gain
Weight Loss
Rashes
Leg Swelling
27.When did these symptoms start?
Under 6 months post-transplant
6 months - 1 year post-transplant
1 - 2 years post-transplant
2 - 5 years post-transplant
5 - 10 years post-transplant
10+ years post-transplant
N/A (Not applicable)
Hair Loss
Gastrointestinal Issues
Mouth Sores
Weight Gain
Weight Loss
Rashes
Leg Swelling
28.To what extent have these symptoms affected the following areas of your life?
5 (Extremely Severe)
4 ( Very Much)
3 (Moderately)
2 ( Slightly)
1 (Not at all)
N/A (Not Applicable)
Work / School
Family / Parenting
Social Life / Relationships
Mental Health
Physical Health
Finances
Independence
Travel
29.Which symptom do you wish would go away the most?
30.What transplant medications were you on when these symptoms started?
Section 6: Long-Term Fears & Concerns
31.How concerned are you about each of the following?
5 (Extremely Concerned)
4
3
2
1 (Not at All Concerned)
Losing my transplant
Declining kidney function
Developing cancer
Developing diabetes
Infections
Long-term medication toxicity
Heart attack
32.What is your single biggest long-term concern related to your medications?
33.Overall, how satisfied are you with your current anti-rejection medications?
34.What aspects of your treatment is most burdensome?
35.How important would each of the following improvements be?
Not at all important.
Slightly important.
Moderately important.
Very important.
Extremely important.
Better cognitive function
Fewer tremors
Better sleep
Lower cancer risk
Lower infection risk
Better long-term safety
Fewer pills
Less frequent dosing
Better quality of life
Section 8: Life After Transplant & Future Therapies
36.What does "doing well" after transplantation mean to you today?
37.How much mental energy do you spend thinking about your transplant each day?
1 (Never)
2
3
4
5 (Everyday)
38.How has your quality of life changed since the transplant?
39.What do you wish providers better understood about living with an organ transplant?
40.How has your transplant affected your family life including your partner, and your social and physical life?
41.What message would you give to companies that are developing new drugs for transplant patients?