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MS Self-Report Questionnaires: Fatigue and Sexual Function

Marsha L Tarver, PhD
VA Puget Sound Health Care System-Seattle

Self-Report Questionnaires 
Fatigue Severity Scale (FSS) 
Fatigue Severity Scale Questionnaire 
Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19) 
In Summary

Self-Report Questionnaires

Self-report questionnaires are used to measure a person’s perception of his/her own experiences and understanding of events. The purpose is to help individuals evaluate their health, emotions and/or experiences. The self-report evaluations can help people organize their experiences in a more meaningful way that can be shared with their healthcare providers. The reports create an opportunity to communicate sensitive topics with healthcare providers in a less threatening manner. Healthcare providers can then review the self assessments with their patients and if needed provide appropriate medical interventions.

There are several self-report questionnaires that are directly related to helping people with MS evaluate their condition and experiences. The Fatigue Severity Scale (FSS) and the MS Intimacy and Sexuality Questionnaire-19 (MSISQ-19) are two examples of self-report surveys that can help people with MS evaluate their levels of disease experiences. The results can then be shared with healthcare providers to help manage disease symptoms of MS. This document contains these two self-report questionnaires.
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Fatigue Severity Scale (FSS)

Fatigue is recognized as the most common symptom experienced by people with MS. Some studies indicate that fatigue affects approximately 85% of the MS population and nearly 66% of this population experiences it daily. The Fatigue Severity Scale (FSS) was developed by Lauren Krupp, MD, a neurologist who specializes in MS, to address this overwhelming MS symptom. She and her colleagues designed a self-report survey that patients could complete and bring to appointments that would help providers in recognizing and diagnosing fatigue related symptoms of MS.

The self-report questionnaire is a 9 question survey that takes approximately 5 minutes to complete and score. This short survey can provide a wealth of clinical information on the severity of fatigue symptoms. The questionnaire addresses fatigue symptoms as they relate to physical functioning, exercise and work, and family or social life. The scoring is based on a scale ranging from 1 (strongly disagree with the statement) to 7 (strongly agree with the statement). The results are easy to score. The score is based upon an average of the responses to the questions (add up the circled number from each question and then divide by nine). The final number can then be compared to other diseases that are associated with fatigue. The final score is a good indicator of how each person rates their level of fatigue. This information should be shared with healthcare providers so appropriate interventions can be made. Below is the FSS Questionnaire:
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Fatigue Severity Scale Questionnaire

Instructions: Circle the number that best represents your response to each question.

Scoring Range: 1 = strongly disagree with the statement to 7 = strongly agree with the statement.

                                                                                              Score

During the past week, I have found that:                    

1.

My motivation is lower when I am fatigued.

 

1

2

3

4

5

6

7

2.

Exercise brings on my fatigue.

 

1

2

3

4

5

6

7

3.

I am easily fatigued.

 

1

2

3

4

5

6

7

4.

Fatigue interferes with my physical functioning.

 

1

2

3

4

5

6

7

5.

Fatigue causes frequent problems for me.

 

1

2

3

4

5

6

7

6.

My fatigue prevents sustained physical conditioning.

 

1

2

3

4

5

6

7

7.

Fatigue interferes with carrying out certain duties and responsibilities.

1

2

3

4

5

6

7

8.

Fatigue is among my three most disabling symptoms.

 

1

2

3

4

5

6

7

9.

Fatigue interferes with my work, family, or social life.

 

1

2

3

4

5

6

7

FSS Scoring: Add up the circled numbers and divide by 9.____________

Compare results with the following scores:

People who do not experience fatigue - score about 2.8.

People with Lupus - score about 4.6.

People with Lyme Disease - score about 4.8.

People with fatigue related to Multiple Sclerosis – score about 5.1.

People with Chronic Fatigue Syndrome – score about 6.1.

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Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19)

The effects of MS on intimacy and sexual functioning are a common problem. This problem affects nearly 91% of men and 80% of women who have MS. In addition to the problems of sexual dysfunction there tends to be a problem of sharing this concern with healthcare providers. To address this sensitive topic and to open dialog between people with sexual function problems and with their healthcare providers, Frederick Foley, PhD and Audrey Sanders, PhD developed a self-report questionnaire for patients. Drs. Foley and Sanders and their colleagues designed a 19 question self-report survey that people with MS could complete and then bring to their healthcare providers. The questionnaire addresses primary, secondary, and tertiary effects of MS on sexual functioning. The primary effects are related to impaired genital sensation and/or decreased sexual drive. The secondary effects focus on fatigue, bladder problems, and spasticity or muscle tightness. The tertiary effects are related to psychological distress and overall well-being like depression and feelings of a negative self-image. These three levels of functioning can have a negative impact on intimacy and sexual functioning.

The self-report questionnaire is a 19 question survey that takes approximately 15 minutes to complete. This survey provides the opportunity for people with MS who are having sexual functioning problems to address their concerns about sexuality and intimacy. The scoring is based on a scale ranging from 1 (never interfered with my sexual activity or satisfaction) to 5 (always interfered with my sexual activity or satisfaction). Questions are answered by placing a check mark in the number box that best corresponds with each person’s experience. The survey authors recommend that any question that is marked with a 4 or 5 should be discussed with providers. This survey can help healthcare providers address appropriate interventions for symptom management of sexual functioning concerns. Below is the MSISQ-19 questionnaire:
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Instructions for MSISQ-19

In order to better understand the impact of Multiple Sclerosis on intimacy and sexuality, this 19-item questionnaire asks you to rate how various MS symptoms have interfered with your sexual activity or satisfaction over the last six months. Questions may be answered by placing a check or any other mark in the square located next to the question and below the appropriate number. There is no right or wrong answers. If you are unsure how to answer a question, please choose the best answer you can.

MSISQ-19

Over the last six months, the following symptoms have interfered with my

sexual activity or satisfaction:

 

 

Never

Almost Never

On Occasion

Almost Always

Always

 

1.

Muscle tightness or spasms in my arms, legs, or body.

1

2

3

4

5

 

2.

Bladder or urinary symptoms.

1

2

3

4

5

 

 

3.

Bowel symptoms.

 

1

2

3

4

5

 

4.

Feelings of dependency because of MS.

1

2

3

4

5

 

5.

Tremors or shaking in my hands or body.

1

2

3

4

5

 

6.

Pain, burning, or discomfort in my body.

1

2

3

4

5

 

7.

Feeling that my body is less attractive.

1

2

3

4

5

 

8.

Problems moving my body the way I want during sexual activity.

1

2

3

4

5

 

9.

Feeling less masculine or feminine due to MS.

1

2

3

4

5

 

10.

Problems with concentration, memory, or thinking.

1

2

3

4

5

 

11.

Exacerbation or significant worsening of my MS.

1

2

3

4

5

 

12.

Less feeling or numbness in my genitals.

1

2

3

4

5

 

13.

Fear of being rejected sexually because of MS.

1

2

3

4

5

 

14.

Worries about sexually satisfying my partner.

1

2

3

4

5

 

15.

Feeling less confident about my sexuality due to MS.

1

2

3

4

5

 

16.

Lack of sexual interest or desire.

 

1

2

3

4

5

 

17.

Less intense or pleasurable orgasms or climaxes.

1

2

3

4

5

 

18.

Takes too long to orgasm or climax.

1

2

3

4

5

 

19.

Inadequate vaginal wetness or lubrication (women), difficultly getting, keeping a satisfactory erection (men).

1

2

3

4

5

 

 

MSISQ-19 Scoring:

Primary sexual dysfunction items

12, 16, 17, 18, 19

Secondary sexual dysfunction items

1, 2, 3, 4, 5, 6, 8, 10, 11

Tertiary sexual dysfunction items

7, 9. 13, 14, 15

Any item scoring “4” or “5” should be discussed with your MS healthcare provider.

 

In Summary

The self-report questionnaires are designed to help people organize their thoughts and feelings about health concerns. The questionnaires should be considered tools that will help the patient and provider identify medical and other issues that can affect people with MS. They are not designed to diagnose a particular problem but to increase the understanding of MS symptoms and their relationship to each individual. It is important that patients share results from self-report surveys with their healthcare providers. Sharing results of self-report questionnaires can increase treatment effectiveness on symptom management.
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updated: November 2010