Patricia P. Katz for the Association of Rheumatology Health Professionals Outcomes Measures Task Force. BARTHEL INDEX General Description

Transcription

1 Arthritis & Rheumatism (Arthritis Care & Research) Vol. 49, No. 5S, October 15, 2003, pp S15 S27 DOI /art , American College of Rheumatology MEASURES OF FUNCTION Measures of Adult General Functional Status The Barthel Index, Katz Index of Activities of Daily Living, Health Assessment Questionnaire (HAQ), MACTAR Patient Preference Disability Questionnaire, and Modified Health Assessment Questionnaire (MHAQ) Patricia P. Katz for the Association of Rheumatology Health Professionals Outcomes Measures Task Force BARTHEL INDEX General Description Purpose. Measure functional independence and need for assistance in mobility and self-care (1). The Barthel Index was developed in a chronic hospital setting; it has generally not been adopted for use in community-based studies (2). Items were chosen to reflect the level of nursing care required. The item weightings are based on the level of nursing care required and social acceptability (3). Content. Basic activities of daily living (e.g., feeding, transfer, hygiene). Items are rated in terms of whether individuals can perform activities independently, can perform with some assistance, or are dependent. Developer/contact information. Dorothea Barthel, PT, BA. Versions. Original, modified 10-item version (4), expanded 15-item version (5), and 5-item short form (6) in English. Other variants are also available. There is little consensus over which should be considered the definitive version (3), but the original and the 10-item and 15-item modifications are the most commonly used. It has been translated into Turkish and Japanese (selfrated version). Patricia P. Katz, PhD: Arthritis Research Group, University of California, San Francisco. Address correspondence to Patricia Katz, PhD: Arthritis Research Group, University of California, San Francisco, 3333 California Street, Suite 270, San Francisco, CA pkatz@itsa.ucsf.edu. Submitted for publication July 30, 2003; accepted July 30, Number of items in scale. Ten in original and modified English version; 15 in an expanded version; 5 in short version. Other variants have different numbers of items. Ten in Turkish; 13 in Japanese. Subscales. None. Populations. Developmental/target. Rehabilitation patients with stroke and other neuromuscular or musculoskeletal disorders. Other uses. Oncologic disorders. WHO ICF Components. Impairment, Activity limitation. Administration Method. Data obtained from medical records, direct observation, or by interview. Can also be self-administered (7). One study suggests that the scale can be administered reliably over the telephone to subjects; data provided by proxy respondents were slightly less reliable (8). Training. Self-explanatory. Time to administer/complete. Completion by health professional takes 5 minutes. Selfadministration takes 10 minutes. Equipment needed. None. Cost/availability. Original form available at doc_ch37.05.html#a Modified 10-item version available at: docs_ch37/doc_ch37.05.html#a S15

2 S16 Katz et al Scoring Responses. Scale. Scale depends on the version used. In the original version, functional status descriptions are provided, and the rater selects the appropriate description of functional ability for each category. Items are weighted according to the level of nursing care required. Weights range from A modified scoring system has been suggested by Shah and colleagues (9) using a 5-level ordinal scale. In the modified 10-item version, functional categories may be scored from 0 to 1, 0 to 2, or 0 to 3, depending on the function. The 15-item version uses a 4-point response scale, and the 5-item version is scored 0 to 1, 0 to 2, or 0 to 3, depending on the function. Score range. Original version The score range for individual items is Feeding 0 10 (3 functional descriptions, unable, needs some help, independent, score as 0, 5, or 10), Moving from wheelchair to bed/return 0 15, Personal hygiene 0 5, Toileting 0 10, Bathing 0 5, Walking on level surface 0 15, Ascend/descend stairs 0 10, Dressing 0 10, Controlling bowels 0 10, and Controlling bladder In the 10-item modified version, the scores range from 0 to 20. The 15-item version has scores ranging from 0 to 100, and the 5-item version scores range from 0 to 20. Interpretation of scores. Higher scores reflect greater independence. In the original version, a patient who scores 100 is continent; independent in feeding, dressing, getting in and out of bed, and bathing; can walk at least one block; and can ascend and descend stairs without help. Shah and colleagues (9) note that a score of 0 20 suggests total dependence, severe dependence, moderate dependence and slight dependence. In the 15-item version, a score of 60 is commonly considered to be the threshold score for marked dependence (10). Method of scoring. Arithmetic computation by hand. Time to score. Less than 5 minutes. Training to score. Not reported. Training to interpret. Not reported. Norms available. No. Psychometric Information Reliability. In the original version, the interrater reliability for each item via weighted kappa ranged from 0.53 to 0.94 (11); the interrater reliability for total score: intraclass correlation (ICC) 0.94 (95% confidence interval [95% CI] ) (11), and the internal consistency via Cronbach s alpha (9). In the 5-item version, the test-retest reliability was 0.89 (12), interrater agreement was 0.99 (13), and Cronbach s alpha 0.98 (13). In the 5-item version, Cronbach s alpha was 0.88 (6). Validity. Original version criterion-related. A comparison of self-report versus observed performance in 126 patients 75 years old (14) gave the follow figures, values shown are Kappa (95% CI; % exact agreement) Eating 0.34 ( ; 69.8), Dressing 0.33 ( ; 56.1), Hygiene 0.21 ( ; 66.7), Bathing 0.34 ( ; 50.8), Control bladder 0.32 ( ; 65.9), Control bowel 0.10 ( ; 73.0), Transfer bed 0.36 ( ; 80.2), Transfer toilet 0.40 ( ; 79.4), Walking 0.30 ( ; 59.5), Stairs 0.37 ( ; 51.6). Original version construct validity. Correlation with Short Form-36 subscales is r 0.22 (Role Emotional subscale) to 0.81 (Physical Functioning subscale) (15). Correlation with Nottingham Health Profile subscales: r depending on subscale (15). Correlation with Berg Balance Scale and Fugl-Meyer: r 0.78 (11). Correlation with PULSES: Pearson r 0.61 to 0.80, depending on point in time measurement was taken, (i.e., admission, discharge, and followup at 2 years (scales are inverse to each other) (12). Original version, predictive validity. Correlation with Frenchay Activities Index at 180 days after stroke: r 0.59 (11). Modified 10-item version validity. Wade and Hewer showed high concurrent validity (r ) with a measure of motor ability (16). Predictive validity: Barthel scores were predictive of 6-month mortality, hospital length of stay, and progress following stroke (10,17,18). The 15-item version validity. There were high correlations (overall r 0.91) between scores and performance of tasks and role performance (5), and high correlations with other measures of function (e.g., with Katz Index of Activities of Daily Living, r 0.78; with PULSES profile, r 0.74 to 0.90) (10,13,19,20). Scores were predictive of return to independent living after 6 months (21).

3 Adult General Function S17 The 5-item short form validity validity. Concurrent validity correlation with original version, r 0.90 (6). Sensitivity/responsiveness to change. Studies have demonstrated that the Barthel Index can demonstrate change with effect sizes equivalent to the Functional Independence Measure (22). Among patients in a geriatric day hospital, the Barthel Index was not as sensitive as the London Handicap Scale (23). Comments and Critique The many variants of the index may produce confusion. Some authors have noted that interpreting the middle scoring categories may be difficulty (3,4). The Barthel Index is not designed to detect low levels of disability. Individuals may receive the highest score, and still require assistance with other activities (3). There is considerably more psychometric data available for the Barthel Index than for many other activities of daily living scales (3). References 1. (Original) Mahoney FI, Barthel DW. Functional evaluation: the Barthel Index. MD State Med J 1965; 14: Spector WD. Functional disability scales. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd edition. Philadelphia: Lippincott- Raven; p McDowell I, Newell C. Measuring health: a guide to rating scales and questionnaires. 2nd edition. New York: Oxford University Press; p Collin C, Wade DT, Davies S, Horne V. The Barthel ADL Index: a reliability study. Int Disabil Stud 1988; 10: Fortinsky RH, Granger CV, Seltzer GB. The use of functional assessment in understanding home care needs. Med Care 1981;19: Hobart JC, Thompson AJ. The five item Barthel index. J Neurol Neurosurg Psychiatry 2001;71: McGinnis GE, Seward ML, DeJong G, Osberg JS. Program evaluation of physical medicine and rehabilitation departments using self-report Barthel. Arch Phys Med Rehabil 1986;14: Korner-Bitensky N, Wood-Dauphinee S. Barthel Index information elicited over the telephone: is it reliable? Am J Phys Med Rehabil 1995;74: Shah S, Vanclay F, Cooper B. Improving the sensitivity of the Barthel Index for stroke rehabilitation. J Clin Epidemiol 1989;42: Granger CV, Sherwood CC, Greer DS. Functional status measures in a comprehensive stroke care program. Arch Phys Med Rehabil 1977;58: Hsueh I-P, Lee M-M, Hsieh C-L. Psychometric characteristics of the Barthel Activities of Daily Living Index in stroke patients. J Formos Med Assoc 2001;100: Granger CV, Albrecht GL, Hamilton BB. Outcome of comprehensive medical rehabilitation: measurement by PULSES Profile and the Barthel Index. Arch Phys Med Rehabil 1979;60: Shinar D, Gross CR, Bronstein KS, Licara-Gehr EE, Eden DT, Cabrera AR, et al. Reliability of the Activities of Daily Living Scale and its use in telephone interview. Arch Phys Med Rehabil 1987; 68: Sinoff G, Ore L. The Barthel Activities of Daily Living Index: self-reporting versus actual performance in the old-old ( 75 years). J Am Geriatr Soc 1997;45: Wilkinson PR, Wolfe CDA, Warburton FG, Rudd AG, Howard RS, Ross-Russell RW, et al. Longer term quality of life and outcome in stroke patients: is the Barthel index alone an adequate measure of outcome? Qual Health Care 1997;6: Wade DT, Hewer RL. Functional abilities after stroke: measurement, natural history and prognosis. J Neurol Neurosurg Psychiatry 1987;50: Wylie CM. Gauging the response of stroke patients to rehabilitation. J Am Geriatr Soc 1967;5: Granger CV, Greer DS, Liset E, Coulombe J, O Brien E. Measurement of outcomes of care for stroke patients. Stroke 1975;6: Granger CV. Outcome of comprehensive medical rehabilitation: an analysis based upon the impairment, disability, and handicap model. Int Rehabil Med 1985;7: Rockwood K, Stolee P, Fox RA. Use of goal attainment scaling in measuring clinically important change in the frail elderly. J Clin Epidemiol 1993;46: Granger CV, Hamilton BB, Gresham GE, Kramer AK. The Stroke Rehabilitation Outcome Study: Part II. Relative merits of the total Barthel Index Score and a four-item subscore in predicting patient outcomes. Arch Phys Med Rehabil 1989;70: Van der Putten JJMF, Hobart JC, Freeman JA, Thompson AJ. Measuring change in disability after inpatient rehabilitation: comparison of the responsiveness of the Barthel Index and the Functional Independence Measure. J Neurol Neurosurg Psychiatry 1999;66: Harwood RH, Ebrahim S. Measuring the outcomes of day hospital attendance: a comparison of the Barthel Index and London Handicap Scale. Clin Rehabil 2000;14: KATZ INDEX OF INDEPENDENCE IN ACTIVITIES OF DAILY LIVING, OR INDEX OF ADL General Description Purpose. Measure independence in activities of daily living (ADL).

4 S18 Katz et al Content. Basic activities of daily living (bathing, dressing, toileting, transfers, continence, and feeding). Katz et al noted that the loss of functional skills occurs in a specific order, with the most complex being lost first (1). The initial scoring method for this scale reflects this hierarchy of function. Developer/contact information. Sidney Katz, MD. Versions. Original. Number of items in scale. There are 6, one for each ADL. Some research has suggested that continence should not be considered an ADL and should not be included in the scale (2). Subscales. None. Populations. Developmental/target. Older adults and individuals with chronic diseases. Other uses. None. WHO ICF Components. Impairment, Activity limitation. Administration Method. Observation. Training. Observer must be trained to administer the scale. Time to administer/complete. Not reported. Equipment needed. None. Cost/availability. Available at medal.org/adocs/docs_ch37/doc_ch html#a Scoring Responses. Scale. Each ADL is scored on a 3- point scale of independence. The Katz Index of ADL is a semi-guttman scale, meaning that the scale items are ordered in terms of difficulty. The scoring reflects this, although some variation in the hierarchy of difficulty is allowed. Katz et al (1) reported that the function of 86% of persons evaluated was consistent with the hierarchy. The original scoring using the ADL hierarchy uses an 8-level ordinal scale where A independence in feeding, continence, transferring, going to toilet, dressing and bathing; B independent in all but one of these functions; C independent in all but bathing and one additional function; D independent in all but bathing, dressing and one additional function; E independent in all but bathing, dressing, going to toilet, and one additional function; F independence in all but bathing, dressing, going to toilet, transferring and one additional function; G dependent in all six functions; Other dependent in at least two functions, but not classifiable as C, D, E, or F. Katz and Akpom (3) later proposed a simplified scoring system in which individuals are scored 0 6, reflecting the number of ADLs in which they are dependent. Score range. Range is A G, or 0 6. Interpretation of scores. Scores reflect the specific ADLs, or number of ADLs, in which an individual is dependent. Higher (alphabetically or numerically) scores reflect greater dependence. Method of scoring. Independence in various combinations of ADL determine ordinal rank on alpha scale, or add the number of ADLs in which the individual is dependent for the numeric scale. Time to score. Less than 5 minutes. Training to score. Not reported. Training to interpret. Not reported. Norms available. Not reported. Psychometric Information Reliability. The interrater reliability is 0.95 or better after training (1,4). The coefficient of reproducibility, (a measure of the internal consistency of an ordered measure), is (5). Validity. Construct validity. Scores on the Katz ADL Index are correlated with scores on the Barthel index (r 0.78 [6], kappa 0.77 [7]). Predictive validity. Correlation with mobility dysfunction (0.50) and house confinement (0.39) among older adult patients 2 years later (8). Correlation between ADL dependency level and mortality among nursing home residents (4). In a comparison of outcome (home versus hospitalized/ deceased) at one month post stroke between patients with grade A-B-C versus patients with grade D-E-F-G using 2 different hospital samples the following were found (9): positive predictive value 94%, 96%; negative predictive value 92%,

5 Adult General Function S19 96%; sensitivity 83%, 94%, and specificity 97%, 97%. In a comparison of outcome (survived versus deceased) 1 month after stroke between patients with grades A-B-C-D-E-F for survival versus patients with grade G, the following were found (9): positive predictive value 94%, 98%; negative predictive value 68%, 62%; sensitivity 84%, 86%, and specificity 86%, 96%. Sensitivity/responsiveness to change. This scale has a significant floor effect, in that it is relatively insensitive to variations at low levels of disability (10). Comments and Critique The Katz Index of ADL is very widely used, in a wide variety of populations (10), although relatively little has been published on its reliability and validity. The Katz ADL scale is sensitive to environment; that is, different scores may be obtained for individuals in different settings or with different environmental modifications (11). References 1. (Original) Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW: The Index of ADL: a standardized measure of biological and psychosocial function. JAMA 1963;185: Jagger C, Clarke M, Davies RA. The elderly at home: indices of disability. J Epidemiol Community Health 1986;40: Katz S, Akpom CA. A measure of primary sociobiological functions. Internat J Health Serv 1976;6: Spector WD, Takada HA. Characteristics of nursing homes that affect resident outcomes. J Aging Health 1991;3: Brorsson B, Asberg KH. Katz Index of Independence in ADL: reliability and validity in short term care. Scand J Rehabil Med 1984;16: Rockwood K, Stolee P, Fox RA. Use of goal attainment scaling in measuring clinically important change in the frail elderly. J Clin Epidemiol 1993;46: Gresham GE, Phillips TF, Labi MLC. ADL status in stroke: relative merits of three standard indices. Arch Phys Med Rehabil 1980;61: Katz S, Downs TD, Cash HR, Grotz RC. Progress in development of the Index of ADL. Gerontologist 1970;10: Asberg KH, Nydevik I. Early prognosis of stroke outcome by means of Katz Index of Activities of Daily Living. Scand J Rehab Med 1991;23: McDowell I, Newell C. Measuring health: a guide to rating scales and questionnaires. 2nd edition. New York: Oxford University Press; p Spector WD. Functional disability scales. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd edition. Philadelphia: Lippincott- Raven; p HEALTH ASSESSMENT QUESTIONNAIRE (HAQ) General Description Purpose. Although the original ( full ) HAQ covers 5 dimensions of health outcomes, the version most commonly used includes only the Disability Index, the Visual Analog Pain (VAS) Pain Scale, and the VAS Patient Global Assessment. This review will focus only on the Disability Index. The HAQ Disability Index measures difficulty in performing activities of daily living. It is the most widely used functional measure in rheumatology. The HAQ was specifically developed for use among adults with arthritis, but it has since been used in a wide range of populations (1). Content. Questions assessing difficulty over the past week in 20 specific functions, grouped into 8 categories: dressing and grooming, arising, eating, walking, personal hygiene, reaching, gripping, and other activities. Developer/contact information. James F. Fries, MD, Division of Immunology and Rheumatology Stanford University Medical Center, 1000 Welch Road, Suite 203, Palo Alto, CA Versions. Many adaptations and/or translations are available including English (US, Canada, Australia), Belgian Flemish and French, Canadian French, Chinese (Cantonese, Hong Kong), Danish, French, German, Spanish (US, Spain, many Central and South American countries), Swedish, and Turkish. (For complete listing, see Bruce and Fries [reference 2], p. 172.) Number of items in scale. There are 20 items covering 8 categories. In addition, questions are asked about personal assistance or assistive aids or devices needed to perform the 20 functions. Subscales. Dressing and grooming (2 items, dress yourself, including tying shoelaces and doing buttons, shampoo your hair); Arising (2 items, stand up straight from an armless straight chair, get in and out of bed); Eating (3 items, cut your meat, lift a full cup or glass to your mouth, open a new milk carton); Walking (2 items, walk outdoors on flat ground, climb up 5 steps); Personal hygiene (3 items, wash and dry your entire body, take a tub bath, get on and off the toilet); Reaching (2 items,

6 S20 Katz et al reach and get down a 5-pound object from just above your head, bend down to pick up clothing from the floor); Gripping (3 items, open car doors, open jars that have been previously opened, turn faucets on and off); Other activities (3 items, run errands and shop, get in and out of a car, do chores such as vacuuming or yardwork). Populations. Developmental/target. Individuals with rheumatoid arthritis and osteoarthritis. Other uses. Modifications have been made for other rheumatologic and non-rheumatologic conditions. WHO ICF Components. Activity limitation. Administration Method. Interviewer (in person or by telephone) or self-administered. Training. None required. Time to administer/complete. Less than 10 minutes. Equipment needed. None. Cost/availability. Contact the author. Scoring Responses. Scale. Each item is rated from 0 to 3, with 0 no difficulty, 1 some difficulty, 2 much difficulty, 3 unable to do. Score range. The highest score within a category is used as the category score. Dependence on physical assistance or equipment automatically raises the category score to 2. The HAQ score is calculated as the mean of the 8 category scores. Scores range from 0 to 3, in increments of If fewer than 6 category scores are present, the overall score is not calculated. Interpretation of scores. Higher scores reflect more limitation. Method of scoring. Hand scored. Alternate methods of scoring have been developed for example, scoring without taking use of assistance or aids into account (3) or using the mean category score instead of the highest score (4) but these scoring methods have not gained wide use. Wolfe (5) suggests that even if alternative scoring methods are used, the traditional score should also be calculated in order to compare with published data. Time to score. Less than 2 minutes. Training to score. None. Training to interpret. Not reported. Norms available. Not reported. Psychometric Information Reliability. Test-retest correlations have ranged from 0.87 to 0.99 (2,6). In alternate forms, i.e., interviewer versus self-administered forms of the instrument (1), the Spearman rank correlation was Dressing 0.60, Arising 0.82, Eating 0.85, Walking 0.83, Hygiene 0.56, Reach 0.80, Grip 0.64, and Index Validity. Criterion validity. Fries et al (1) compared an interviewer-administered HAQ to observed performance and found an overall correlation of 0.88, with component scores ranging from 0.47 (arising) to 0.88 (walking). Daltroy et al (7) also found a high correlation (-0.72) between HAQ scores and a physical capacity measure. Construct validity. Numerous studies have shown significant correlations of HAQ scores with clinical (e.g., joint count, grip strength) and laboratory (e.g., erythrocyte sedimentation rate [ESR]) measures, and other measures of function (e.g., Arthritis Impact Measurement Scales [AIMS], WOMAC) (2,6,8). Predictive. HAQ scores are among the best predictors of long-term outcomes, including work disability, economic loss, and joint surgery, among people with rheumatoid arthritis (9). HAQ scores have been found to be better predictors of mortality than other patient self-report measures, laboratory, radiographic, or physical examination data (10). Sensitivity/responsiveness to change. Liang et al (11) found that the HAQ was less responsive to change within subjects before and after hip or knee surgery than the Sickness Impact Profile (SIP), AIMS, and the Index of Well-Being (IWB). However, Hawley and Wolfe (12) showed that the HAQ may be more sensitive to detecting change than traditional measures of disease activity and disease-related impairments (e.g., ESR, grip strength). Ziebland et al (13) reported that the modified HAQ (MHAQ) was more responsive to

7 Adult General Function S21 change than pre-post differences in HAQ. They attributed this to the MHAQ s use of transition questions. On the other hand, Stucki et al (14) found that changes in clinical and laboratory parameters were associated with improved, unchanged, or worse HAQ scores, but this association was not noted for the MHAQ. Wolfe (5) also found the HAQ better at detecting treatment change than the MHAQ. HAQ may also be more sensitive to detecting change in the middle of the scale rather than at the ends of the scale (15). Comments and Critique The HAQ is probably the most widely used instrument in rheumatology. Available evidence indicates high reliability and validity. However, the HAQ may be less responsive to change than other instruments, especially among individuals with very low or very high levels of disability. References 1. (Original) Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum 1980;23: Bruce B, Fries JF. The Stanford Health Assessment Questionnaire: a review of its history, issues, progress, and documentation. J Rheumatol 2003;30: Van der Heide A, Jacobs JWG, van Albada-Kuipers GA, Kraaimaat FW, Geenan R, Bijlsma JWJ. Self report functional disability scores and the use of devices: two distinct aspects of physical function in rheumatoid arthritis. Ann Rheum Dis 1993;52: Tomlin GS, Holm MG, Rogers JC, Kwoh CK. Comparison of standard and alternate Health Assessment Questionnaire scoring procedures for documenting functional outcomes in patients with rheumatoid arthritis. J Rheumatol 1996;23: Wolfe F. Which HAQ is best? A comparison of the HAQ, MHAQ and RA-HAQ, a Difficult 8-Item HAQ (DHAQ), and a Rescored 20 Item HAQ (HAQ20): analyses in 2,491 rheumatoid arthritis patients following leflunomide initiation. J Rheumatol 2001; 28: McDowell I, Newell C. Measuring health: a guide to rating scales and questionnaires. 2nd edition. New York: Oxford University Press; p Daltroy LH, Larson MG, Eaton HM, Phillips CB, Liang MH. Discrepancies between self-reported and observed physical function in the elderly: the influence of response shift and other factors. Soc Sci Med 1999;48: Ramey DR, Fries JF, Singh G. The Health Assessment Questionnaire 1995: status and review. In Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials, 2nd edition. Philadelphia: Lippincott- Raven; 1996, p Wolfe F. A reappraisal of HAQ disability in rheumatoid arthritis. Arthritis Rheum 2000; 43: Wolfe F, Michaud K, Gefeller O, Choi HK. Predicting mortality in patients with rheumatoid arthritis. Arthritis Rheum 2003;48: Liang MH, Larson MG, Cullen KE, Schwartz JA. Comparative measurement efficiency and sensitivity of five health status instruments for arthritis research. Arthritis Rheum 1985;28: Hawley DJ, Wolfe F. Sensitivity to change of the Health Assessment Questionnaire (HAQ) and other clinical and health status measures in rheumatoid arthritis: results of short-term clinical trials and observational studies versus long-term observational studies. Arthritis Care Res 1992;5: Ziebland S, Fitzpatrick R, Jenkinson C, Mowat A, Mowat A. Comparison of two approaches to measuring change in health status in rheumatoid arthritis: the Health Assessment Questionnaire (HAQ) and modified HAQ. Ann Rheum Dis 1992;51: Stucki G, Stucki S, Bruhlmann P, Michel BA. Ceiling effects of the Health Assessment Questionnaire and its modified version in some ambulatory rheumatoid patients. Ann Rheum Dis 1995;54: Daltroy LH. Common problems in using, modifying, and reporting on classic measurement instruments. Arthritis Care Res 1997;10: MACTAR PATIENT PREFERENCE DISABILITY QUESTIONNAIRE General Description Purpose. To assess disability in patients with rheumatoid arthritis (RA), focusing only on those activities affected by RA and judged to be important to the patient. Content. Patients identify the 5 specific activities in which they would most like to have improvement. Questions are provided for baseline and followup assessments. Followup assessments focus on changes in ability to perform the activities identified at baseline. The scale is scored by assessing changes in the ability to perform these activities from baseline to followup. Developer/contact information. Peter Tugwell, MD and colleagues, Center for Global Health Institute of Population Health, 1 Stewart St, Rm 312, Ottawa, ON K1N 6L5, Canada. elacasse@uottawa.ca. Versions. Original. Number of items in scale. The baseline interview includes 5 questions intended to elicit activities that have been affected by arthritis.

8 S22 Katz et al Additional questions are used to query the patient s priorities for improvement. The number of additional questions depends on how many activities are ranked for priority; 5 is the usual number. The followup interview assesses changes in each of the priority activities. Subscales. None. Populations. Developmental/target. Individuals with rheumatic conditions. Other uses. None. WHO ICF Components. Activity limitation, Participation restriction. Administration Method. Interviewer-administered. Training. Interviewers need to be trained to administer the interview. Time to administer/complete. Time is minutes (1,2). Equipment needed. None. Cost/availability. Available in original reference (1). Copy available at the Arthritis Care & Research Web site at jpages/ :1/suppmat/index.html. Scoring Responses. Scale. Based on responses to followup interview: ( Have you noticed any change in your ability to. [If yes], Has your ability to improved or become worse? ) Worse -1; no change 0; better 1. Score range. A summary score can be created by weighting each change score according to its priority ranking, with the highest ranked activity s change score multiplied by 5, and the lowest ranked multiplied by 1. The formula is ([6 rank] change score). Interpretation of scores. Scores are interpreted to represent change for each individual over time. If the summary score is used, higher positive scores reflect improvement; negative scores reflect worsening. Method of scoring. Hand-scored. Time to score. Not reported. Training to score. Not reported. Training to interpret. Not reported. Norms available. Not reported. Psychometric Information Reliability. Interrater reliability: ICC 0.78 (3). Validity. In assessing concurrent validity, Tugwell et al (4) noted significant correlations of MACTAR scores with other end-points: McMaster Health Index Questionnaire, Physical subscale 0.53, Physician s global assessment r 0.52, Lee Functional Index r 0.50, Joint pain/tenderness count r 0.38, Grip strength r Verhoeven et al (2) examined the correlation of MACTAR scores (using the weighted summary scores) with other functional and outcome measures. HAQ r 0.66, AIMS mobility scale r 0.52, Grip strength r 0.43, Patient s global assessment r Sensitivity/responsiveness to change. The MACTAR has generally been found to be highly responsive to change (2 4). Tugwell et al (4) attribute the high degree of responsiveness to the use of transition questions ( have you noticed a change in your ability to...?) rather than pre-post changes in single-state questions, and to the tailoring of items to patients. Wright and Young (3) noted that, although the MACTAR was a highly responsive scale, its use of a transition question may reduce variability and elevate the score, and limiting individuals to 5 items (activities) may exaggerate improvement because problems not listed do not change. Comments and Critique The unique aspect of the MACTAR is its focus on patient preferences. Tugwell and others (1,2,4,5) have noted that standard functional status questions often do not include activities that are important to patients, and that the activities that are included in standard functional status measures are often not considered to be important by patients. Limitations of the MACTAR include its unique method of calculating change and a lack of knowledge of the reliability and stability of patient preferences during a stable functional period (6). The latter issue may be particularly relevant to longer-term followup i.e., activities selected at baseline may become less important as the pattern of disability changes (2). Some authors have noted that evaluating each patient according to different

9 Adult General Function S23 critieria (e.g., different activities) may also be problematic (7); the developers of the scale argued that using different items to assess functional change was no more problematic than a situation in which individuals may obtain the same overall score on a standard functional status instrument by exhibiting problems with different activities (1). Verhoeven et al (2) noted that the scoring system was complex and required amendments. Although the MACTAR is a valid and highly responsive instrument, the complexity of administration and scoring may limit the feasibility of its use for clinical trials or other aggregrate situations (2). Its strength may be in monitoring change in function for individual patients over relatively short periods of time. References 1. (Original) Tugwell P, Bombardier C, Buchanan W, Goldsmith CH, Grace E, Hanna B.The MACTAR Patient Preference Disability Questionnaire: an individualized functional priority approach for assessing improvement in clinical trials in rheumatoid arthritis. J Rheumatol 1987;14: Verhoeven AC, Boers M, van der Linden S. Validity of the MACTAR Questionnaire as a functional index in a rheumatoid arthritis clinical trial. J Rheumatol 2000;27: Wright JG, Young NL. A comparison of different indices of responsiveness. J Clin Epidemiol 1997;50: Tugwell P, Bombardier C, Buchanan WW, Goldsmith C, Grace E, Bennett KJ, et al. Methotrexate in rheumatoid arthritis: impact on quality of life assessed by traditonal standard-item and individualized patient preference health status questionnaires. Arch Intern Med 1990;150: Hewlett S, Smith AP, Kirwan JR. Values for function in rheumatoid arthritis: patients, professionals, and public. Ann Rheum Dis 2001;60: Bell MJ, Bombardier C, Tugwell P. Measurement of functional status, quality of life, and utility in rheumatoid arthritis. Arthritis Rheum 1990;33: Karlson EW, Katz JN, Liang MH. Chronic rheumatic disorders. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. 2nd edition. Philadelphia: Lippincott-Raven; p MODIFIED HEALTH ASSESSMENT QUESTIONNAIRE (MHAQ) General Description Purpose. The MHAQ is a modification of the Health Assessment Questionnaire (HAQ). Content. The number of specific activities queried is reduced from 20 to 8 (one item is used from each of the 8 categories covered in the HAQ). The MHAQ has subscales that assess degree of difficulty, satisfaction with function, change in function over the past 6 months, and perceived need for help with each activity, although the degree of difficulty items are the most commonly used. Developer/contact information. Theodore Pincus, MD, Division of Rheumatology, Vanderbilt University, 203 Oxford House, Box 5, Nashville, TN t.pincus@vanderbilt.edu. Versions. Original. Number of items in scale. There are 8 items (dressing, arising, eating, walking, hygiene, reaching, gripping, getting in and out of car) repeated in each of 4 subscales. Subscales. Difficulty, satisfaction, change in function, need for help. Populations. Developmental/target. Individuals with rheumatic conditions. Other uses. None. WHO ICF Components. Activity limitation. Administration Method. Self-report. Training. Not reported. Time to administer/complete. Less than 5 minutes. Equipment needed. None. Cost/availability. Available in original reference (1). Scoring Responses. Scale. For Difficulty ( Are you able to...? ). the scale is 0 Without any difficulty, 1 With some difficulty, 2 With much difficulty, 3 Unable to do. Any positive response regarding help or assistive devices raises the score to 2. For Satisfaction ( How satisfied are you with your ability to...? ), 0 Satisfied and 1 Dissatisfied 1. Change in difficulty ( Compared to 6 months ago, how difficult is it NOW (this week) to...? ) 0 Less difficult now, 1 No change, and 2 More difficult now. Need for help

10 S24 Katz et al ( Do you need help to...? ), 0 Do not need help 0, and 1 Need help. Score range. Scale scores are the mean of the scores on the 8 items within the scale. Difficulty 0 3; Satisfaction 0 1; Change in function 0 2; Need for help 0 1. Interpretation of scores. Higher scores on all scales are more negative (i.e., reflect more difficulty, less satisfaction, function more difficult now than previously, and need for more help). Method of scoring. Arithmetic calculation by hand. Time to score. Less than 5 minutes. Training to score. Not reported. Training to interpret. Not reported. Norms available. Not reported. Psychometric Information Reliability. For the Difficulty scale, the testretest reliability at one month 0.91 (1). Validity. Concurrent validity for the Difficulty scale. Concurrent validity showed the following correlation with HAQ subscale scores (1): Dressing 0.75, Arising 0.71, Eating 0.75, Walking 0.74, Hygiene 0.79, Reaching 0.82, Gripping 0.76, and In/Out Car Blalock and colleagues (2) also examined the equivalency of the HAQ with the MHAQ, and found that although the scores were highly correlated, the MHAQ scores were consistently and significantly lower (indicated better function) than the HAQ score. In every category, HAQ items chosen for the MHAQ had a lower mean than the MHAQ-excluded items. Construct validity for the Difficulty Scale. Although Pincus et al (3) reported significant correlations of MHAQ scores with clinical (e.g., joint count, radiographic measures) and laboratory (e.g., ESR) measures, Stucki et al (4) found that MHAQ scores were not correlated with changes in laboratory or clinical measures. Arvidson et al (5) reported that MHAQ scores were not correlated with radiographic evidence of joint damage; but were correlated with performance measures (e.g., walk test, grip strength). Construct validity for Dissatisfaction With Function scale. Scores were incrementally greater (more dissatisfied) as difficulty in function increased (1). Sensitivity/responsiveness to change. Difficulty scale. Blalock and colleagues (2) suggest that the MHAQ is relatively insensitive to low levels of disability, and, because of its restricted range and skewed distribution, should be used with caution when the intent is to assess functional change. Stucki and colleagues (4) and Wolfe (6) also noted clustering of scores at the low end of the scale (Stucki at scores 0.3; Wolfe at scores 1.0). Change in Difficulty scale. Ziebland and colleagues (7) found that the MHAQ change in difficulty scale was more sensitive to changes in clinical variables (i.e., correlated more highly with variables such as grip strength, pain, morning stiffness, and ESR) than a pre-post difference in the traditional HAQ score. Comments and Critique The majority of psychometric analysis of the MHAQ has focused on the difficulty subscale, and has generally found that it appears to be less psychometrically sound than the HAQ. Blalock and colleagues (2) noted that scores on the MHAQ were consistently lower than those on the HAQ. Mean differences on the overall difficulty score were 0.67 lower using HAQ score calculated with adjustment for help and/or assistive devices, and 0.52 lower using HAQ scores without such adjustments. The MHAQ does not make adjustments for use of help or assistive devices. Blalock also noted that while HAQ scores were normally distributed across the scale s full possible range (0 3), MHAQ scores were not normally distributed and ranged only from 0 to Similar findings were also noted by Stucki et al (4) and by Wolfe (6). There are conflicting reports about correlations between MHAQ scores and clinical and laboratory variables. Wolfe concluded that the advantages in length of the MHAQ over the HAQ were offset by loss of sensitivity and responsiveness to change (6). On the other hand, there is some evidence that the change in difficulty scale may be more sensitive to changes in clinical variables than a pre-post change score calculated from the HAQ. This finding is consistent with findings of high responsiveness using the MACTAR s transition questions. References 1. (Original) Pincus T, Summey JA, Soraci SA, Wallston KA, Hummon NP. Assessment of patient satisfaction in activities of daily living using a modified Stanford Health Assessment Questionnaire. Arthritis Rheum 1983;26:

11 Adult General Function S25 2. Blalock SJ, Sauter SVH, DeVellis RF. The Modified Health Assessment Questionnaire difficulty scale: a health status measure revisited. Arthritis Care Res 1990;3: Pincus T, Callahan LF, Brooks RH, Fuchs HA, Olsen NJ, Kaye JJ. Self-report questionnaire scores in rheumatoid arthritis compared with traditional physical, radiographic, and laboratory measures. Ann Intern Med 1989;110: Stucki G, Stucki S, Bruhlmann P, Michel BA:.Ceiling effects of the Health Assessment Questionnaire and its modified version in some ambulatory rheumatoid arthritis patients. Ann Rheum Dis 1995;54: Arvidson NG, Larsson A, Larsen A. Simple function tests, but not the modified HAQ, correlate with radiological joint damage in rheumatoid arthritis. Scand J Rheumatol 2002;31: Wolfe F. Which HAQ is best? A comparison of the HAQ, MHAQ and RA-HAQ, a Difficult 8 Item HAQ (DHAQ), and a Rescored 20 Item HAQ (HAQ20): analyses in 2491 rheumatoid arthritis patients following leflunomide initiation. J Rheumatol 2001; 28: Ziebland S, Fitzpatrick R, Jenkinson C, Mowat A, Mowat A. Comparison of two approaches to measuring change in health status in rheumatoid arthritis: the Health Assessment Questionnaire (HAQ) and modified HAQ. Ann Rheum Dis 1992;51: Acknowledgments Members of the Association of Rheumatology Health Professionals Outcomes Measures Task Force are Patricia P. Katz, PhD, (Chairman), Karen W. Hayes, PT, PhD, John E. Hewett, PhD, Carol Oatis, PT, PhD, Janet L. Poole, PhD, OTR/L, Elizabeth A. Schlenk, PhD, RN, Christina H. Stenström, PhD, RPT and Janalee Taylor, MSN, RN.

12 S26 Katz et al Summary Table of Adult Functional Status Measures* Measure/scale Content No. of items Response format Method of administration Time for administration Primary scale outputs Barthel Index Functional independence and need for assistance in self-care/basic activities of daily living Katz Index of ADL Health Assessment Questionnaire (HAQ) MACTAR Patient Preference Disability Questionnaire Modified Health Assessment Questionnaire (MHAQ) Independence in ADL Difficulty in performing activities of daily living Disability, focusing only on activities judged to be important by the patient Degree of difficulty, satisfaction with function, changes in function over past 6 months, and need for help in activities of daily living Original: 10 Modifications: 5, 10, 15 Unable, needs help, independent (with some variation) 6 3-point scale of independence 20 items (activities) over 8 categories, plus queries about use of help or aids Baseline: 5 questions to elicit activities. Additional items to rank priority. Number can vary, usually 5. Followup: assesses changes in each priority activity 8 items (activities) within each subscale. Items are a subset of HAQ items. 0 3; 0 no difficulty, 1 some difficulty, 2 much difficulty, 3 unable to do At followup: Worse, no change, better Difficulty (0 3) 0 no difficulty, 1 some difficulty, 2 much difficulty, 3 unable to do. Satisfaction (0 1) 0 dissatisfied, 1 satisfied. Change in difficulty, (0 2), 0 less difficult now, 1 no change, 2 more difficult now Need for help (0 1) 0 do not need help, 1 need help. Observer, from medical records or interview (inperson or telephone), selfadministered Observer: Less than 5 minutes Self: Less than 10 minutes Overall score of dependence in ADL Observer scored Not reported Overall score of dependence in ADL. Scored from A G, or from 0 6 Interviewer or selfadministered Less than 10 minutes Interviewer Less than 10 minutes Interviewer or selfadministered Less than 10 minutes Overall score from 0 3 (mean of category scores) Summary score of changes in priority activities Scores for difficulty, satisfaction, change in difficulty, need for help. Difficulty score most commonly reported. * ADL activities of daily living. Validated populations Psychometric properties Reliability Validity Responsiveness Rehabilitation patients with stroke and other neuromuscular or musculo-skeletal disorders Excellent Excellent Moderate Older adults and individuals with chronic diseases Little work Predictive validity is excellent Unknown Individuals with rheumatoid arthritis and osteoarthritis. Also used in other rheumatic and nonrheumatic conditions Excellent Excellent Moderate Individuals with arthritis, rheumatic conditions Acceptable Excellent Excellent Individuals with rheumatoid arthritis Difficulty: Excellent Difficulty: Moderate Difficulty: Moderate

13 Adult General Function S27 Content of Adult Functional Status Measures* Barthel Katz HAQ MHAQ Impairments Continence Basic ADL-Mobility Bed Activities Standing Transfers Ambulation Inclines/Stairs Basic ADL-Personal Care Bathing Toileting Grooming Dressing Feeding Hand Functions Instrumental ADL Home chores * has item(s) related to this activity or concept. Content of MACTAR is dependent on patient-identified activities. For another comparative presentation of the content of functional status measures, see Stewart AL, Painter PL. Issues in measuring physical functioning and disability in arthritis patients. Arthritis Care Res 1997;10: HAQ Health Assessment Questionnaire; MHAQ Modified Health Assessment Questionnaire; ADL activities of daily living.