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Women’s Health Issues 18 (2008) 406–412

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SELF-ASSESSED PHYSICAL FUNCTION LEVELS OF WOMENWITH FIBROMYALGIA

A National Survey

Jessie Jones, PhDa*, Dana N. Rutledge, RN, PhDb, Kim Dupree Jones, RN, PhD, FNPc, LynneMatallana, MAd, and Daniel S. Rooks, PhDe

aHealth Sciences, California State University, Fullerton, CaliforniabNursing, California State University, Fullerton, CaliforniacOregon Health and Science University, Portland, OregondNational Fibromyalgia Association, Anaheim, California

eBeth Israel Deaconess Medical Center, Boston, Massachusetts

Received 22 December 2007; revised 26 April 2008; accepted 28 April 2008

Objective. We sought to determine the self-reported physical function level of women withfibromyalgia (FM).

Methods. We performed a secondary analysis using data from an Internet-based surveyposted on the National Fibromyalgia Association website. Data used for this study includedwomen (n � 1,735) aged 31–78 years who reported being diagnosed with FM.

Results. More than 25% of women reported having difficulty taking care of personal needsand bathing, and >60% reported difficulty doing light household tasks, going up/down 1flight of stairs, walking ½ mile, and lifting or carrying 10 lbs. More than 90% of womenreported having difficulty doing heavy household tasks, lifting or carrying 25 lbs, and doingstrenuous activities. Women with lower functional ability reported higher levels of fatigue,pain, spasticity, depression, restless legs, balance problems, dizziness, fear of falling, andbladder problems.

Conclusions. The average woman in this sample reported having less functional abilityrelated to activities of daily living and instrumental activities of daily living than the averagecommunity-dwelling woman in her 80s. Several symptoms/conditions were found to beassociated with functional limitation in women with FM. Targeting these—singly or in

clusters—may potentially be important in terms of future interventions.

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ibromyalgia (FM) is a condition marked bychronic, generalized pain and fatigue, primarily

nderpinned by objective abnormalities in pain pro-essing and sleep disruption. FM is seen in 2–6% ofhe population and disproportionably affects women

ith a 9:1 ratio (women to men; Lawrence et al., 2008;olfe, Ross, Anderson, Russell, & Hebert, 1995). The

Supported by the National Fibromyalgia Association.Presented as a poster at the American College of Sports Medicineeeting, May 30, 2007, New Orleans, Louisiana.* Correspondence to: Jessie Jones, California State University,

ullerton, Department of Health Science, 800 North State College,

oullerton, CA 92834-6870.

opyright © 2008 by the Jacobs Institute of Women’s Health.ublished by Elsevier Inc.

onsequences of FM are exacerbated by a host ofomorbidities and a sedentary lifestyle leading toeclines in physical abilities, functional impairments,nd increased risk for disabilities (Bennett, Jones,urk, Russell, & Matellana, 2007; Clauw & Crofford,003; Mannerkorpi, Svantesson, & Broberg, 2006).Patients with FM report functional limitations that

re more debilitating or equal to that reported byersons with osteoarthritis or rheumatoid arthritis

Hawley & Wolfe, 1991). Further, in people with FMWhite, Speechley, Harth, & Ostbye, 1999b; Wolf &

ichaud, 2004), loss of function has been stronglyssociated with work disability. Current data on levels

f physical function in people with FM come from

1049-3867/08 $-See front matter.doi:10.1016/j.whi.2008.04.005

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J. Jones et al. / Women’s Health Issues 18 (2008) 406–412 407

mall population studies using self-assessment (Daosta et al., 2000; Henriksson, Gundmark, Bengtsson,Ek, 1992; Henriksson & Burckhardt, 1996; Manner-

orpi, Burckhardt, & Bjelle, 1994). The purpose of thistudy was to determine perceived level of physicalunction in a large sample of women with FM, and toetermine the association of physical function withge and self-reported symptoms.

ethods

sing data collected through an Internet-based na-ional survey—namely, the National Fibromyalgia As-ociation Questionnaire (NFAQ; Bennett et al.,007)—a cross-sectional study captured levels of per-eived physical function and symptom intensities inomen with FM. The study was approved by a stateniversity’s institutional review board.

tudy participants and data collectionhe sample came from respondents to a fall 2005-mail invitation for the subscribers to the Nationalibromyalgia Association online newsletter during a-day data collection period. The NFAQ is an Internet-ased questionnaire with 121 items covering 5 contentreas: background information, symptoms, physicalunction, employment impact, and nature/effective-ess of interventions (Bennett et al., 2007). Acceptableontent validity, test–retest reliability, and grade leveleadability for use by the general public were deter-ined before data collection (Bennett et al., 2007).ata presented herein include demographic variables

nd those related to physical function and symptoms.

hysical function level. Physical function level was de-ermined by responses to a 12-item Physical Abilitympact (PAI) scale (Figure 1) that was part of theFAQ. The PAI includes questions about activities ofaily living (ADLs), instrumental activities of daily

iving (IADLs), and advanced activities such as stren-ous, more vigorous exercises and tasks. The PAI wasdapted from the Composite Physical Function (CPF)cale designed by Rikli and Jones (1998) to discrimi-ate across a wider range of functional abilities by

ncreasing response categories from 4 to 5. The CPFnd the PAI use items from shorter, established scalesf physical function and from the 1991 Nationalealth Interview Survey (National Center for Health

tatistics, 1991) to allow comparison with nationalurvey data. The CPF has acceptable convergent va-idity with both self-report and performance measuresf physical function with older adults (Rikli & Jones,998b). In a pilot study with women who had FMJones, Rutledge, Lindemann, & Rigali, 2006), the CPFad very high test–retest reliability (.98) and accept-

ble concurrent validity (r � �.71; p � .01) with the f

ibromyalgia Impact Questionnaire, the most widelysed measure of physical function in research withM populations (Bennett, 2005). Test–retest reliabilityor the PAI over 2 weeks in 55 women with FM wasigh (intraclass correlation coefficient, .85; Trinh,005). Data from the current study supported highnternal consistency for the PAI (Cronbach �, .93).

ymptom severity. This study used 22 symptoms oronditions measured in the original study with nu-eric rating scales (0–10); higher scores indicated

reater severity. For example, the item “fatigue” wasnchored as 0 � no fatigue and 10 � worst possibleatigue; “not being able to remain asleep” was an-hored as 0 � no problem staying asleep and 10 �xtreme problems staying asleep. Support for contentalidity, internal consistency (Cronbach alpha, .88)nd initial test–retest reliability has been discussedBennett et al., 2007; Rutledge, Jones, & Jones, 2007).

tatistical analysissing the statistical software package SPSS Version

3.0 (SPSS Inc., Chicago IL), descriptive statistics weresed to describe sample demographics and key vari-bles. To determine levels of physical function, theample was stratified based on level of function:igh-functioning participants were defined as thoseho could perform all 12-items with no difficulty;oderate-functioning participants could perform 7–11

tems with no difficulty; low-functioning individualsould perform �6 of the tasks with no difficulty. The2 test was used to determine differences of decades,n ordinal level variable, on physical function levelhigh/moderate/low). One-way analyses of varianceANOVA) were used to determine differences inymptom severity (treated as interval variables) byhysical function level (high/moderate/low). Com-arisons between group means were calculated usingBonferroni correction to adjust the alpha level down-ard to decrease the chance of making a type I error.

esults

f the 2,596 women who responded to the surveyBennett et al., 2007), 1,735 completed all variables onhe questionnaire reported here. Respondents werepproximately 47 years old, had FM symptoms for �4ears, and were mostly White, married, and wellducated (Table 1). Most of the sample was over-eight (70% with body mass index [BMI] � 25; 43%ith BMI � 30) and reported a low level of physical

unction. Individual item analysis (Table 2) indicatedhat �25% of the sample had difficulty taking care ofersonal needs and bathing, and �60% had difficultyoing light household tasks, going up/down one

light of stairs, walking ½ mile, and lifting or carrying

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J. Jones et al. / Women’s Health Issues 18 (2008) 406–412408

0 lbs. More than 90% of women had difficulty doingeavy household tasks, lifting or carrying 25 lbs, anderforming strenuous activities.In this sample, age had an inverse relationship with

hysical function. As shown in Table 3, there is aradual increase in the percentage of women with lowunction with advancing decade, from 66% of women30 years to 88% of women �70 years (�2 [10, n �

,554] � 27.71; p � .002).The intensity of symptoms or responses to FM

igure 1. Physical Ability Impact Scale.

aried and are reported in Table 4. On average, the d

ighest mean scores were for morning stiffness, fa-igue, nonrestorative sleep (not feeling rested uponwakening), and pain. Low-intensity scores were re-orted for conditions including rashes, bladder prob-

ems, and swelling. One-way ANOVAs showed thatomen in the 3 function groups have significantlyifferent scores on all symptoms and conditions listed

n Table 4; lower functioning women had more prob-ems with symptoms than did women with moderateo high function. For most items in the table, mean

ifferences are �1 and, thus, are probably not clini-

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J. Jones et al. / Women’s Health Issues 18 (2008) 406–412 409

ally significant. However, some items in Table 4fatigue, pain, spasticity, depression, restless legs, bal-nce problems, dizziness/fear of falling, bladder prob-ems) demonstrated differences between women inhe low function group and either moderate or highunction groups of almost 2 or greater; these differ-nces may be clinically meaningful, and should beonsidered by clinicians.

iscussion

sing an Internet survey questionnaire in a largeumber of women with FM, we found a positive,linically meaningful association between physicalunction and pain and fatigue. Pain has been shown toe negatively related to physical function in previoustudies (Bennett et al., 2005; Henriksson, Liedberg, &erdle, 2005; Lindberg & Iwarsson, 2002; Wolfe et al.,

able 1. Sample Characteristics (n � 1,735)

Mean � SD No. (%)

ge (y) 47.1 � 10.7 NAducation*High school or less NA 274 (15.8)Trade/technical/community

college/some college642 (37.0)

College 463 (26.7)Graduate/professional school 332 (19.1)

ace/ethnicity†

Hispanic NA 49 (2.8)White 1591 (91.7)Black 39 (2.2)Asian/Pacific Islander 7 (0.4)American Indian/Alaskan Native 71 (4.1)Other 45 (2.6)arital status*Never married NA 213 (12.3)Divorced/separated 310 (17.9)Widowed 37 (2.1)Married 1169 (67.6)

ength of time has hadfibromyalgia symptoms*

0–12 months NA 34 (2.0)1–2 years 73 (4.3)2–4 years 228 (13.3)�4 years 1382 (80.5)

ody mass index 30.19 � 7.6 NAomposite physical function

(higher � greater function)31.74 � 9.9 NA

hysical ability levelsLow (can do without difficulty

�6 tasks)NA 1338 (77.1)

Moderate (can do withoutdifficulty 7–11 tasks)

372 (21.4)

High (can do without difficultyall 12 tasks)

25 (1.4)

bbreviation: NA, not applicable.Missing data; numbers do not add to 1,735.Percentages may not add to 100%; participant was asked whetherispanic (Yes/no), and then, what race.

990). In fact, in a clinical trial of 2 active psychological

nterventions (Thieme, Flor, & Turk, 2006), both cog-itive and operant behavioral therapy led to de-reased physical impairment and pain at 6 and 12onths posttreatment. Based on our study design and

hose of others, it is unclear whether physical functionhanges precede symptoms or symptoms precedehysical function changes. The relationship between

atigue and physical function in FM has been lesslear. In a review of literature, Henriksson, Liedberg,nd Gerdle (2005) found that fatigue predicts workysfunction, which is related to physical impairment.

n fact, these authors discuss fatigue as a greaterisabler than pain for women with FM. Others have

ound different relationships between fatigue andhysical function using a variety of measures (Lind-erg & Iwarsson, 2002; Neumann, Berzak, & Buskila,000; Thieme et al., 2006).Other symptoms and conditions that showed poten-

ially important differences across physical impair-ent levels were depression, spasticity, restless legs,

alance problems, dizziness/fear of falling, and blad-er problems. Of these, depression has been mosttudied in persons with FM and has been found to beelated to physical function (Lindberg & Iwarsson,002; Neumann et al., 2000). In a Canadian healthurvey of household residents (White, Speechley,arth, & Ostbye, 1999a), the effect of having FM onork disability (index of physical impairment) was

reater (odds ratio, 2.7) than that of clinical depression1.4), indicating that the totality of symptoms in FM

ay affect people in terms of dropping out of theorkforce to a greater extent than does clinical depres-

ion.We introduce into the literature several variables

ot previously reported in relation to physical func-ion among women with FM. This is most likelyecause common measurement tools used in priortudies did not assess them. Their likely clinical sig-ificance as found in this study indicates that theirurther assessment in persons with FM is warranted,specially in relation to physical performance. Givenhe probable heterogeneity of FM in terms of symptomxpression (Clauw & Crofford, 2003; Thieme & Turk,006), future studies in persons with FM need tonclude a full range of potential predictors of physicalunction. For example, finding that fall frequency andalance impairment were worse in persons with FMhan those without (Jones, Theou, Rutledge, Linde-

ann, & Just, 2006) may be related to a relationshipetween balance impairment and physical perfor-ance. This information may contribute to future

ntervention development in persons who have FM.imilarly, researchers must begin to determine whichymptom clusters significantly predict physical func-ion in persons with FM because it is unlikely that allymptoms contribute equally (Shillam, 2007).

Respondents to this study (Table 1) are similar to

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J. Jones et al. / Women’s Health Issues 18 (2008) 406–412410

hose from other epidemiologic studies and surveys inersons with FM (Bergman et al., 2001; Forseth &ran, 1992; Lindell, Bergman, Petersson, Jacobsson, &errstrom, 2000; White, Speechley, Harth, & Ostbye

999b; Wolfe et al., 1995). Based on our data, mostomen with FM have difficulty with ADLs and

ADLs, rating themselves as having at least someifficulty performing 10 of the 12 function (physical)

asks. Although it is difficult to make direct compari-ons, the findings in this study support other findingshat women with FM have significant problems re-arding physical function (Da Costa et al., 2000; Haw-

ey & Wolfe, 1991; Henriksson et al., 1992; HenrikssonBurckhardt, 1996; Kingsley et al., 2005; Mannerkorpi

t al., 1994, 2006; White, Speechley, Harth & Ostbye,999a).A strength of this study is the opportunity to

ompare the findings with other large national popu-ation studies regarding physical function. Comparingata from this survey with the physical function levelsf community-residing older women aged 60–89 (n�,886; Rikli & Jones, 1999), women with FM (mean age,

able 2. Ability to Carry Out Specific Physical Activities (n � 1,68

Activity

Can DoWithout Difficulty

n (%)S

ake care of personal needs 1169 (69.3)athe self 1215 (72.1)limb up/down 1 flight of stairs 522 (31.0)o light household tasks 584 (34.8)hop for groceries or clothes 653 (39.0)alk 1–2 blocks 814 (48.8)alk ½ mile (6–7 blocks) 488 (29.6)alk 1 mile (12–14 blocks) 329 (20.0)

ift or carry 10 lbs (full bag ofgroceries)

541 (32.7)

ift or carry 25 lbs (medium to largesuitcase)

145 (8.7)

o heavy household tasks—likescrubbing floors, vacuuming,raking leaves

122 (7.3)

o strenuous activities—like hiking,digging in garden, moving heavyobjects, bicycling, aerobic danceactivities, strenuous calisthenics

54 (3.2)

able 3. Physical Function Levels (Low/Moderate/High) byecade in Women With Fibromyalgia (n � 1,554)

DecadeLown (%)

Moderaten (%)

Highn (%)

Total WomenPer Decade

30 90 (66.2) 40 (29.4) 6 (4.4) 1361–40 192 (73.6) 62 (23.8) 7 (2.7) 2611–50 396 (76.9) 112 (21.7) 7 (1.4) 5151–60 418 (81.5) 92 (17.9) 3 (.6) 5131–70 87 (77.7) 25 (22.3) 0 (0) 1121–80 15 (88.2) 2 (11.8) 0 (0) 17

Iotal 1,198 (77.1) 333 (21.4) 23 (1.5) 1,554 (100)

7) had significantly lower physical function than theverage 80- to 89-year-old. Comparing the data fromhis survey with 3 other national data sets (Nationalenter for Health Statistics, 1992, 1998; U.S. Depart-ent of Health and Human Services, 2003)—the 2000–

003 National Health Interview Survey (n � 39,990ommunity-dwelling adults aged �55 years), the 2003

edicare Current Beneficiary Survey (community-welling older adults), and the Health Interview Sur-ey Supplement on Aging II (9,447 civilian noninsti-utionalized persons who were aged �70 years)—theverage woman with FM in our study reported havingore difficulty bathing/showering, climbing stairs,

arrying 10 lbs, shopping, doing light housework, andoing heavy housework than the average communitywelling woman age �85 years!When interpreting the results of this study, it is

mportant to acknowledge its limitations. The majorimitation was the use of self-report for all measures,ncluding perceived physical function. Future studieshould include performance measures of actual phys-cal function using valid and reliable tools. In addition,he survey population was limited to mostly Cauca-ian, well-educated, married women who reportedhey were diagnosed with FM for �4 years, and whoad Internet access and were familiar with the Na-

ional Fibromyalgia Association website or its news-etter.

onclusion

he average women with FM responding to the sur-ey had less functional ability related to ADLs and

o Withifficulty%)

Can Do Witha Lot of Difficulty

n (%)

Cannot DoWithout Help

n (%)

Cannot Doat Alln (%)

24.9) 85 (5.0) 14 (.8)21.8) 77 (4.6) 25 (1.5) 1 (.1)44.9) 332 (19.7) 46 (2.7) 27 (1.6)40.4) 301 (17.9) 93 (5.5) 23 (1.4)34.9) 244 (14.6) 168 (10.0) 25 (1.5)29.9) 208 (12.5) 51 (3.1) 97 (5.8)27.9) 341 (20.7) 76 (4.6) 283 (17.2)20.1) 413 (25.2) 103 (6.3) 466 (28.4)36.4) 310 (18.7) 96 (5.8) 105 (6.3)

24.9) 458 (27.4) 264 (15.8) 388 (23.2)

23.9) 565 (33.6) 320 (19.0) 271 (16.1)

14.7) 427 (25.4) 240 (14.3) 714 (42.4)

8)

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ADLs than the average community dwelling woman

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J. Jones et al. / Women’s Health Issues 18 (2008) 406–412 411

n her 80s. Despite an average age of 47, most womeneported difficulty doing tasks associated with stayinghysically independent. In fact, several symptoms/onditions (fatigue, pain, spasticity, depression, rest-ess legs, balance problems, dizziness/fear of falling,ladder problems) were found to be associated withhysical impairment in women with FM. Targeting

hese—singly or in clusters—may be important in termsf future interventions. Without significant interventiono improve physical function, the interactive effects ofging and physical deconditioning associated with FMill be devastating both to individual women and to

he health care system that supports them.

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able 4. Symptom Severity in Women With Fibromyalgia: All WoHigh/Moderate/Low; n �1,735)

All Women

Mean (SD)

tiffness in the morning 7.22 (2.46)atigue 7.11 (2.06)ot feeling rested after sleep 6.87 (2.71)ain 6.47 (1.95)ot being able to remain asleep 6.20 (3.04)

orgetfulness 5.95 (2.67)nability to concentrate 5.95 (2.58)ifficulty falling asleep 5.63 (3.32)ot being able to enjoy life 5.10 (2.70)

pasticity 4.95 (3.23)erceived as burden to others 4.93 (3.58)nxiety 4.59 (3.03)epression 4.48 (3.15)eadaches/migraines 4.40 (3.15)nger 3.85 (2.95)bdominal pain 3.63 (2.90)estless legs 3.59 (3.45)alance problems 3.55 (2.84)welling in the legs, feet, or ankles 3.26 (3.11)izziness/fear of falling 2.96 (2.82)ladder problems 2.56 (3.01)ashes 1.82 (2.91)

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d Women According to Physical Function Levels

Physical Ability Impact

Low Moderate High

Mean (SD) Mean (SD) Mean (SD)

7.54 (2.32) 6.18 (2.65) 6.04 (2.44)7.41 (1.88) 6.13 (2.30) 5.52 (2.40)7.04 (2.68) 6.31 (2.75) 6.16 (2.21)6.80 (1.81) 5.37 (1.96) 4.88 (1.64)6.48 (2.95) 5.35 (3.15) 4.28 (3.16)6.29 (2.56) 4.83 (2.76) 4.67 (2.22)6.25 (2.50) 4.94 (2.63) 5.04 (2.11)5.93 (3.25) 4.70 (3.40) 4.24 (2.95)5.40 (2.63) 4.14 (2.69) 3.68 (2.87)5.65 (2.83) 3.85 (2.80) 3.60 (2.92)5.54 (3.48) 3.04 (3.18) 1.84 (2.15)4.90 (3.04) 3.61 (2.79) 3.16 (2.39)4.90 (3.13) 3.13 (2.78) 2.50 (2.67)4.65 (3.15) 3.54 (3.04) 4.16 (2.76)3.99 (2.93) 3.40 (2.99) 3.24 (2.59)3.86 (2.95) 2.88 (2.60) 2.56 (2.53)3.97 (3.49) 2.39 (3.00) 1.44 (2.58)3.98 (2.82) 2.12 (2.43) 2.08 (2.24)3.59 (3.16) 2.22 (2.69) 1.96 (2.76)3.34 (2.85) 1.76 (2.33) 1.28 (1.95)2.82 (3.11) 1.79 (2.50) .84 (1.77)2.02 (3.03) 1.19 (2.38) 1.96 (2.39)

ion level were statistically significant using a Bonferroni correction

men an

l funct

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uthor DescriptionsJessie Jones, PhD, is a Professor of Health Science

nd Director of the Fibromyalgia Research and Edu-ation Center at California State University, Fullerton.

Dana N. Rutledge, RN, PhD, is a Professor in theepartment of Nursing and Coordinator of Research

or the Fibromyalgia Research and Education Centert California State University, Fullerton.Kim Dupress Jones, RN, PhD, FNP, is an Associate

rofessor in the Schools of Nursing & Medicine atregon Health & Science University.Lynne Matallana, MA, is President and Founder of

he National Fibromyalgia Association.Dan Rooks, PhD, works for Novartis Institutes of

ioMedical Research, Inc. in the area of Translational

edicine, Musculoskeletal Diseases.