Form 1 Survey Survivorship Transplant

OMB No. 0925-0766
Expiry Date 4/30/2023
Burden Statement: Public reporting burden for this collection of information is estimated to average 15
minutes per response, including the time for reviewing instructions, searching existing data sources,
gathering and maintaining the data needed, and completing and reviewing the collection of information.
An agency may not conduct or sponsor, and a person is not required to respond to, a collection of
information unless it displays a currently valid OMB control number. Send comments regarding this
burden estimate or any other aspect of this collection of information, including suggestions for reducing
this burden to: NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974,
ATTN: PRA (0925-0766). Do not return the completed form to this address.

1. Name

* 2. Profession: (Select all that apply)
Physician
Dentist
Advanced Practice Nurse / Physician Assistant
Nursing
Patient Care Coordinator
Laboratory
Nutrition
Pharmacy
Social Work
Other (please specify)

3. What is your specialty? (ID, Hematology, Transplant, etc...)

4. Are you employed by Institute or the Clinical Center ?
Institute (Contractors included)
Clinical Center (Contractors included)

5. Years of experience working in bone marrow transplant

6. Primary Population (select all that apply)
Pediatrics
Adults
Malignant Disease
Non malignant Disease
Other (please specify)

7. Where do you see outpatients? (select all that apply)
Clinic
Day Hospital
NA
Other (please specify)

The next section is divided by body systems and patient concerns that may be
reviewed during an outpatient follow-up visit after their 100 day post-transplant visit.
Please answer each section of the question with either always, usually rarely, never
or N/A. There is also a comment section available to you for each body system and
patient concern if you would like to add information to your response.
8. Immune System: chimerism, infection risk, vaccinations
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

Never

N/A or addressed by
consultant

9. Vision: visual changes and signs of eye GVHD
Always

Usually

Rarely

Never

N/A or addressed by
consultant

Rarely

Never

N/A or addressed by
consultant

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

10. Oral Care: Dentition, and signs of oral GVHD
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

11. Pulmonary: smoking cessation, dyspnea, lung function tests, signs of lung GVHD
Always

Usually

Rarely

Never

N/A or addressed by
consultant

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

12. Cardiovascular: hypertension, hyperlipidemia, late effects of chemo/ radiation
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

Never

N/A or addressed by
consultant

13. Liver: iron overload, LFTs, signs of liver GVHD
Always

Usually

Rarely

Never

N/A or addressed by
consultant

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

14. Kidneys & Bladder: urgency, hypertension, AKI, late effects, medications to avoid
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

Never

N/A or addressed by
consultant

15. Muscles & Joints: Signs of GVHD, myopathy, muscle strength
Always

Usually

Rarely

Never

N/A or addressed by
consultant

Rarely

Never

N/A or addressed by
consultant

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

16. Bone Health: Osteoporosis, fracture risk, physical activity
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

17. Skin: sun exposure, self exam for skin cancer, signs of skin GVHD
Always

Usually

Rarely

Never

N/A or addressed by
consultant

Never

N/A or addressed by
consultant

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

18. Nervous System: neuropathy, long-term neurological conditions
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

19. Endocrine: diabetic care and management, thyroid, growth and pubescent development in children, sex
hormones in adolescents and adults
Always

Usually

Rarely

Never

N/A or addressed by
consultant

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

20. Genitals, Sexual Health and Physical Intimacy: signs of genital GVHD, libido, relationships
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

Never

N/A or addressed by
consultant

21. Fertility and Family Planning: access to fertility services or banked egg or sperm, contraception if
applicable
Always

Usually

Rarely

Never

N/A or addressed by
consultant

Never

N/A or addressed by
consultant

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

22. Diet and Nutrition: Obesity, gastrointestinal signs of GVHD, failure to thrive
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

23. General Health: Connection to home physician, navigation of care, health literacy
Always

Usually

Rarely

Never

N/A

Rarely

Never

N/A

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

24. Secondary Malignancies: prevention screenings
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

25. Sleep and fatigue: Insomnia, excessive sleep, sleep hygiene
Always

Usually

Rarely

Never

N/A

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

26. Cognitive Deficits: Memory, concentration, decision making, executive functioning skills
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

Never

N/A

27. Emotional Health and Wellbeing: body image, depression, anxiety, suicide risk, motivation, post
traumatic stress symptoms
Always

Usually

Rarely

Never

N/A

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

28. Physical Activity and Exercise: Development or modifications to exercise regimens
Always
Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

Usually

Rarely

Never

N/A

29. Vocational Rehab and Returning to Work or School: goal setting, shifting from sick role to goals for
future
Always

Usually

Rarely

Never

N/A

Do you currently address
this in outpatient followup visits?
Are you comfortable
addressing this topic
area?
Would you like your
patients to have
additional education
about this topic or
receive a referral to a
Clinical Center or
community resource?
Comments:

30. Are you interested in joining a work group to develop patient education and resources for topic area?
Yes
Immune System: chimerism, infection risk, vaccinations
Comments:

Vision: visual changes and signs of eye GVHD
Comments:

Oral Care: dentition and signs of oral GVHD
Comments:

Pulmonary: smoking cessation, dyspnea, function tests, signs of lung
GVHD
Comments:

Cardiovascular: hypertension, hyperlipidemia, late effects from chemo/
radiation
Comments:

Liver: iron overload, LFTs, signs of liver GVHD

No

Yes
Comments:

Kidneys and Bladder: hypertension, AKI, late effects, medications to
avoid
Comments:

Muscles and Joints: signs of GVHD, myopathy, muscle strength,
Rheumatology
Comments:

Bone Health: osteoporosis, DEXA, physical activity
Comments:

Skin: sun exposure, self exam for skin cancer, signs of skin GVHD
Comments:

Nervous System: neuropathy, long-term neurological conditions
Comments:

Endocrine: diabetic care and management, thyroid, growth and sex
hormones
Comments:

Genitals, Sexual Health, and Physical Intimacy
Comments:

Fertility and Family Planning: Access to fertility services or banked egg or
sperm
Comments:

Emotional Health and Wellbeing: body image, depression, anxiety,
suicide risk, motivation, post-traumatic stress symptoms

No

Yes
Comments:

Diet and Nutrition: obesity, issues related to GVHD, failure to thrive
Comments:

General Health: connection to home Physician, navigation of care, health
literacy
Comments:

Secondary Malignancies: prevention screenings
Comments:

Fatigue
Comments:

Sleep: Insomnia, excessive sleep, sleep hygiene
Comments:

Cognitive Deficits: memory, concentration, decision making, executive
functioning skills
Comments:

Physical Activity and Exercise: development or modifications to exercise
regimen
Comments:

Vocational Rehab and Return to Work or School: shifting from sick role to
development of goals for the future
Comments:

No