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Patients Against Lymphoma

 

Support >  Fatigue Survey for Indolent Lymphoma Survivors

Last update: 02/28/2011

Fatigue Survey for Patients with Lymphoma or CLL/SLL
(capturing no identifying information)
(See rationale, goals and uses below)

The survey is NOT yet ready for use.
However, you may review the questions below and provide input by clicking

CAUTION to wheel mouse users: 
when a survey menu is active (open), rolling your mouse wheel to  
scroll the page will change the menu option instead, possibly changing your answer.

My Gender:  Male/female
My lymphoma treatment history: Untreated
Once-treated with Rituxan
Once-treated with Rituxan and chemo
Once-treated with Radioimmunotherapy

Treated more than once with Rituxan only
Treated more than once, including Rituxan and chemo
 

Time since last therapy for lymphoma
(select closest that applies)
Never treated |I'm in treatment now | 1 to 3 weeks ago | 1 to 3 months | 6 months to a year | 1.5 years | 2 or more years.
Age at diagnosis?  
Approximate number of years since diagnosis? Newly diagnosed | 1 to 3 weeks ago | 1 to 3 months | 6 months to a year | 1.5 years | 2 ... 25
My current stage of lymphoma: In remission (no evidence of disease)
Stage I | II | III | IV | not known
My bone marrow status:
(from last biopsy)
% of involvement | not known
My level of pain from any cause:

 
 

 

No pain  0
Mild  1
2
3
Moderate  4
5
6
Severe   7
8
9
10
The cause of my pain is: 0 NA (no pain)
1 Lymphoma-related
2 Unrelated to lymphoma
3 Don't know the cause
I am anemic?
Blood tests show low levels of hemoglobin
(low red blood cell count)
0 No
1 Yes, mild
2 Yes, Moderate
3 Yes, severe
4 Don't know
My level of fatigue
just BEFORE I was diagnosed:

 

 

 

Not at all  0
Mild fatigue  1
2
3
Moderate fatigue  4
5
6
Severe fatigue  7
8
9
10
My level of fatigue
for PAST THREE WEEKS:

 

 

Not at all  0
Mild fatigue  1
2
3
Moderate fatigue  4
5
6
Severe fatigue  7
8
9
10
I've reported fatigue to my doctor? No fatigue No,
but plan
to ask
Yes,
without
detail
Yes,
in detail
 
I have been treated for fatigue by my doctor? No
fatigue
No,
but plan
to ask
Yes,
but not presently
Yes,
presently
 
To combat fatigue I have tried:

(check all that apply)

Anemia medications
Anxiety/mood/depression medications
Exercise on a regular basis
Lymphoma treatment (a factor in deciding to treat)
Nutritional support
Sleep disorder treatments/medications
Other

Change in Performance - Mental and Physical
During past THREE WEEKS

It has been challenging to: Not at all A
little
Some
what
Quite
a Bit
Very
Much
Eat normally?
(eat too much or too little)
0 1 2 3 4
Speak or move normally
or have been excessively fidgety (restless)?
0 1 2 3 4
Sleep normally?
(sleep too much, or too little):
0 1 2 3 4
Concentrate on tasks normally? 0 1 2 3 4
Take part in regular activities
from lack of desire/motivation?

(I have lower motivation to do what I did before: socialize, do hobbies, read paper,
watch TV, exercise)
0 1 2 3 4
Physically carry out daily activities?
(less able to cook, shop, climb stairs,
take out trash, carry bundles)
0 1 2 3 4

Change in Mood
During past THREE WEEKS

  Not at all A
little
Some
what
Quite
a Bit
Very
Much
I feel down, depressed or hopeless?
(feeling sad, despondent, isolated,
or feel suicidal, cry often ...
for an extended period of time)
0 1 2 3 4
Have had thoughts that I'd be better off dead
or of hurting yourself?
0 1 2 3 4
I feel that I've let myself or others down? 0 1 2 3 4
           

Please review your selections ...   Thank you for participating! 
We will post survey result here when a sufficient number of participants have completed the form - 200 or more.


Rationale, Goals and Usage

Feeling tired impairs our ability to participate and enjoy life, or even to ask others for help. 

The causes of fatigue can be physical or emotional, and one can feed the other ... leading to a negative loop: 

I'm depressed because I'm physically tired or in pain, and because I'm tired I am feeling depressed ... which affect my sleep, ... which increases my fatigue. 

Contributing also to fatigue/depression/pain can be the effects of the lymphoma or lymphoma therapy.

So our objective is to compare fatigue before and after diagnosis and treatment of lymphoma. We will also try to account for variables that may contribute to loss of energy, such as: pain, age, stage of lymphoma, anemia, treatment exposures, the amount of time since our last treatment, and some well-known depression-associated factors.

We hope this project (the process of completing the survey and the report to follow) will raise awareness about the impact of fatigue on the quality of life of patients fighting lymphoma ... and the need to address the many possible underlying and inter-related causes.  

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For all medical concerns,  you should always consult your doctor. 
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