NLN Online Patient Questionnaire

Until lymphedema becomes a household word, it is imperative that we gather accurate information to best present our case for lymphedema awareness, education, risk reduction, treatment, research and insurance reimbursement.

By collecting this data, we are helping to make history in American medicine. To date, there has been limited statistical data available related to primary and secondary lymphedema (i.e. incidence, education, causes, sites, infection, access to treatment, and more). Your responses to the questions below are important. The more insight we gain from patients such as you, the stronger we become in our quest to establish lymphedema, and lymphology, as an important component of mainstream American medicine.

You may participate in one of two ways. You may (1) complete and submit the survey online or (2) print, complete and return the paper copies to: NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or by fax at: (415) 908-3813.

Thank you so much for taking a few moments to complete and submit this survey. Please Note: Completion of demographic information is voluntary. Your contact information - name, address, phone, email - will be kept strictly confidential and used only for our internal records.

Please answer the following questions as accurately and completely as possible; incomplete surveys cannot be fully analyzed. Be sure to read the questions carefully before answering. If you need assistance, please email the NLN office at nln@lymphnet.org. Thank you again for helping us understand the experiences and issues related to lymphedema so that we can advocate and serve on behalf of persons with lymphedema.

1) Please select the response that most accurately describes you:

 
2) If you have lymphedema, is it:
  Primary (born with lymphedema OR onset during childhood/puberty/adult without an apparent reason)
Secondary (due to cancer surgery or radiation treatment OR resulting from trauma, infection, other surgeries, accident)
 
3) If primary:
  a. At what age did lymphedema first occur? At birth years old
b. Do you have a family history of lymphedema? Yes No
c. How many relatives have been affected by lymphedema?
 
4) Affected Area:
  a. Arm(s) Right Left Both None
b. Leg(s) Right Left Both None
c. Other Face/Neck
Breast(s)
Trunk
Abdomen
Genitalia
Other (please specify):
 
5) SURGERY:
  Have you had cancer-related surgery? Yes No
a. If yes, type of surgery?
If Other, please specify:
b. Year you had surgery:
c. Did your surgery include lymph node removal? Yes No Don't know
d. If so, how many nodes were removed?
e. Did you have Sentinel Node Biopsy? Yes No Don't know
f. How long AFTER your surgery did your lymphedema first occur? month(s) OR year(s)
g. What therapy did you receive, if any, pre- or post-surgery? Radiation
Chemotherapy
Hormonal
Other
None
h. At the time of your surgery, were you informed about the risk of developing LE and risk reduction methods? Yes No
i. Were your limbs measured before surgery to assess baseline limb volume? Yes No
 
6) If you did NOT have cancer surgery, what do you think caused the onset of your Lymphedema?
If Other, please specify:
 
7) INFECTION:
  Since the first onset of your lymphedema, have you had an infection in the affected limb(s)? Yes No Don't know
a. If yes, how many times?
b. Have you been hospitalized to treat your infection? Yes No
c. If yes, how many times have you been hospitalized to treat your infection?
d. Are you currently taking prophylactic (preventive) antibiotics? Yes No
 
8) Please answer the following questions with respect to your area affected by lymphedema:
  a. Do you currently experience pain? Yes No
If yes, how distressing is the pain? Little - - - - Extreme
b. Do you experience a poor range of movement? Yes No
If yes, how limited is your range of movement? Little - - - - Extreme
c. Do you experience numbness? Yes No
If yes, how distressing is the numbness? Little - - - - Extreme
d. Do you experience stiffness? Yes No
If yes, how distressing is the stiffness? Little - - - - Extreme
e. Do you experience a feeling of heaviness? Yes No
If yes, how distressing is the heaviness? Little - - - - Extreme
f. Have you experienced swelling ? Yes No
If yes, it is:
If yes, do you have swelling:
g. Have you experienced pain in the last 30 days? Yes No
 
9) SELF-CARE:
  Are you following a daily self-care program for lymphedema? Yes No
a. If yes, what do you do? (check all that apply): Self-Manual Lymph Drainage
Bandaging
Compression Garments
Skin Care
Exercise
b. How many minutes a day (on average) do you spend on self-care activities for lymphedema?
 
10) Have you ever undergone an intensive treatment program which includes Complete Decongestive Therapy (CDT) or Manual Lymph Drainage (MLD)? Yes No Don't know
 
11) Do you use Alternative Treatments? Yes No
  a. Check which ones you use or have used: Pumps
Bandage alternatives
Yoga
Herbal substitutes
Medications - please list:
Other
b. Are any of these MORE effective than CDT? Yes No Don't know
c.

If yes, which one?

 
12) Quality Of Life:
  a. My overall quality of life is affected by my lymphedema: Not at all - - - - A great deal
b. Over the last 2 months I would rate my overall quality of life as: Poor - - - - Excellent
 
13) Please answer the following questions:
  a. I have a clear understanding about what causes lymphedema Not at all - - - - A great deal
b. I am aware of the treatment methods and therapy options for lymphedema Not at all - - - - A great deal
c. I am knowledgeable about lymphedema self-care methods Not at all - - - - A great deal
 
14) INSURANCE ISSUES:
  Does your insurance provider cover treatment for lymphedema? Yes No Don't know
a. If yes, type of insurance:
b. Which of the following is covered? (check all that apply) Complete Decongestive Therapy (CDT)
Manual Lymph Drainage
Bandages
Garments
Exercise
Pumps
Don’t know
c. How many weeks of treatment (1 session/day) by a trained therapist are covered each year?
OR How many single treatment sessions by a trained therapist each year?
d. How many garments are covered each year?
e. How many sets of bandages are covered each year?
 
15)

What do you see as the most pressing issues in lymphedema? (Please check only three for your entry to qualify)

 Patient Education
Physician/Health Care Professional Education
Insurance Reimbursement
Standardizing Treatment & Establishing National Certification for Therapists
Inclusion of LE in American Medical School Curriculum
Funding for research
Educating the General Public Nationwide
Legislation
Other (please specify):

 
16) OPTIONAL DEMOGRAPHIC INFORMATION
  a. In what country do you live?
b. In what year were you born?
c. What is your gender? Male Female
d. Please indicate the ethnicity with which you most closely identify:
e. How many persons reside in your household?

f.

What is your overall household annual income before taxes?
 
17) Contact Infomation
  a.
First Name:
b.
Last Name:
c.
Address:
d.
City:
e.
State:
f.
Zipcode:
g.
Email: