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The Fibromyalgia Impact Questionnaire (FIQ)

An Historical and Methodological Primer

Carol Burckhardt RN, PhD

 
     
 

Measurement of fibromyalgia treatment outcomes is often difficult.  Not everyone agrees on what outcomes can be measured or what’s important.  Historically, outcomes had the connotation of ending or finality, appropriate for acute illness but unsuitable for a chronic illness like fibromyalgia.  

In the early 1980’s, researchers and clinicians began to realize that chronic illnesses required assessment over long periods of time and attention to the daily experience of people living with symptoms and limitations.  For much of the last 20 years, researchers and clinicians have struggled to define and measure concepts like health status, functioning, disability, and quality of life for people with chronic illnesses.  

Surprisingly, people with fibromyalgia or other chronic illnesses have, in the past, rarely been consulted about what kinds of outcomes are important to them.  Because of the emphasis on disease processes, providers assumed that they knew best what outcomes could and should be measured.  Fortunately, that has changed a great deal in the past few years, so that patient preferences for outcomes are increasingly being sought.  People with fibromyalgia tell health care providers that they value freedom from pain, anxiety and depression, increased energy, ability to do the things that are important to them (work, care for their families, participate in activities), and an overall high quality of life. 

            Fibromyalgia Impact Questionnaire (FIQ) was developed to meet the need for comprehensive fibromyalgia patient evaluation. Rather than attempting to modify an existing instrument from rheumatology, the fibromyalgia treatment team at Oregon Health & Science University chose to develop a new instrument using domains of importance gleaned from patient reports, health status instruments, and clinical observations.  

 In its original form the FIQ contained items that measured physical functioning (10 subitems), symptoms of pain, fatigue, morning tiredness, stiffness, job difficulty, depression, and anxiety along with days of paid work missed and number of good days in the past week.  The scale was first reported in 1989 and an article about it was published in 1991(1).  Minor revisions were made in 1997 when 1 item (climb stairs) was added to the physical function subscale, hashmarks were added to the visual analogue scales to make scoring easier, and the words "including housework" were added to the 2 work-related items so that housework was recognized as a legitimate type of work. 

            The FIQ has been used to assess people in the community who have chronic pain (2), to determine the impact of fibromyalgia on everyday life (3) and disability (4), as well as outcomes in drug studies, exercise treatment, multidisciplinary approaches and treatment program evaluation (5-10). A study that assessed the sensitivity to change of several outcome measures concluded that the FIQ is the most sensitive measure of change in FMS treatment and recommended that it be used in future clinical trials (11).  A recent survey of medical databases found 93 references to the use of the FIQ accessed 11/15/03.  The FIQ has been translated into at least 16 languages, including published versions in Dutch, French, German, Hebrew, Italian, Korean, Spanish, Swedish and Turkish, and a children’s version has been developed (12). 

When an instrument is used to measure anything, it has to have at least two qualities, reliability and validity.  That is, it has to measure consistently and accurately and it has to measure what it says it measures.  Reliability is usually measured by looking at how well the items are related to each other using a test called Cronbach’s alpha and at the scores on the instrument measured at two points in time called test-retest reliability.  Both of these scores can range from 0 to 1.0.  A number higher than .70 is considered good.  Cronbach’s alpha for the total score has ranged from .72 to .93 in English, Swedish, Italian, Hebrew and German versions. Test-retest scores for a 1-week interval have ranged from .56 to .96 in the same versions.    

Validity is measured in several ways.  One type called content validity measures how relevant fibromyalgia patients think the FIQ items are.  The Swedish researchers specifically asked patients about the about relevance of items and all patients found the items relevant to their symptoms and difficulties.  A second way to measure validity is to see what relationship the instrument has other measuring instruments.  If the relationship is expected to be high, the validity is called convergent.  The FIQ items have a significant relationship with the Health Assessment Questionnaire disability scale, and tender point scores.  Another form of validity, discriminant, occurs when an instrument discriminates between groups that are known to be different.  The FIQ can discriminate between untreated fibromyalgia patients, patients who had completed a 6-month multidisciplinary treatment program, and people who do not have any chronic painful illness (See Figure 1).

An essential quality for an outcome measure is sensitivity to change.  FIQ total scores and items change in the desired direction (decrease) as a result of treatment.  The average change in the total score in the clinical trials referenced above is about 19% (9 points). Some people may not change that much and some might change much more.  In the 6-month fibromyalgia treatment program at OHSU patients who finished were asked to assess how much improved they were at the end of the program using a scale from 0 to 100%.  The average self-evaluated improvement was 60%. Figure 2 shows a graph of improvement and the corresponding average FIQ scores.  Patients who said they had changed very little, from 0 to 30%, had scores on the FIQ that were virtually the same as when they started.  Conversely, patients who rated their improvement as more than 30% had FIQ changes ranging from 25 to 41 % (12 to 18 points).  

The clinical question that a health care provider or a person with fibromyalgia might ask is whether this change is meaningful.  Clinical researchers studying treatments in rheumatoid arthritis (RA) have long used 20% as a definition of improvement.  Using those criteria a majority of the patients who completed the 6-month program had a clinically significant improvement.  Clinical researchers who have studied chronic cancer pain often use a cutoff point of 4 on a 0-10 point pain scale with scores at 4 or below indicating adequate pain control when pain cannot be abolished completely. Using those criteria, Figure 3 portrays the scores on the physical functioning and pain subscales when divided by the percent of improvement.  The average physical function score was below 4 in the three groups that had greater than 30% improvement.  Only the group with the highest improvement (greater than 70%) had average pain scores less than 4.   

            The FIQ is a useful instrument for measuring the changes in groups of patients in treatment programs and clinical trials.  Whether it is beneficial for helping individuals and their health care providers plot changes as a result of individual treatment has not been formally tested but many clinicians use it for that purpose.  Figure 1 can be helpful for determining the degree of fibromyalgia impact that an individual has in relation to averages for healthy, untreated patients and patients treated in a multidisciplinary program.  The FIQ and scoring instructions are available at www.myalgia.com

References

 

1.  Burckhardt CS, Clark SR, Bennett RM (1991). The Fibromyalgia Impact Questionnaire: development and validation.  J Rheumatol 18:728‑733.

 

2.  White KP, Nielson WR, Harth M, Ostbye T, Speechley M (2002).  Does the label ”fibromyalgia” alter health status, function, and health service utilization?  A prospective, within-group comparison in a community cohort of adults with chronic widespread pain.  Arthritis Rheum 47: 260-265.

 

3.  Henriksson C, Burckhardt CS (1996). Impact of fibromyalgia on everyday life: a study of women in the USA and Sweden.  Disabil Rehabil 18:241-248.

 

4.  White KP, Speechley M, Harth M, Ostbye T (1999).  Comparing self-reported function and work disability in 100 community cases of fibromyalgia syndrome versus controls in London, Ontario: the Long Fibromyalgia Epidemiology.  Arthritis Rheum 42:76-83.

 

5.  Arnold LM, Hess EV, Hudson JI, Welge JA, Berno SE, Keck PE Jr. (2002).  A randomized, placebo-controlled, double-blind, flexible-dose study of fluoxetine in the treatment of women with fibromyalgia.  Am J Med 112: 191-197.

 

6.  Rooks DS, Silverman CB, Kantrowitz FG (2002).  The effects of progressive strength training and aerobic exercise on muscle strength and cardiovascular fitness in women with fibromyalgia: a pilot study.  Arthritis Rheum  47: 22-28.

 

7. Mannerkorpi K, Nyberg B, Ahlmen M, Ekdahl C (2000).  Pool exercise combined with an educational program for patients with fibromyalgia syndrome.  A prospective, randomized study.  J Rheumatol  27: 2473-2481.

 

8.  Bennett RM, Burckhardt CS, Clark SR, O'Reilly CA, Wiens AN, Campbell SM (1996).  Group treatment of fibromyalgia: A 6-month outpatient program.  J Rheumatol 23:521‑528.

 

9. Worrel LM, Krahn LE, Sletten CD, Pond GR (2001).  Treating fibromyalgia with a brief interdisciplinary program: initial outcomes and predictors of response.  Mayo Clin Proc 76: 384-390.

 

10.  Bailey A, Starr L, Alderson M, Moreland J (1999).  A comparative evaluation of a fibromyalgia rehabilitation program.  Arthritis Care Res 12:336-340.

 

11.  Dunkl PR, Taylor AG, McConnell GG, Alfano AP, Conaway MR (2000).  Responsiveness of fibromyalgia clinical trial outcome measures.  J Rheumatol 27:2683-2691.

 

12.  Schanberg LE, Keefe, FJ, Lefebvre JC, Kredich DW, Gil KM (1996).  Pain coping strategies in children with juvenile primary fibromyalgia syndrome: correlation with pain, physical function, and psychological distress.  Arthritis Care Res 9:89-96.

 

 

 

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