Health Assessment Questionnaire

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The Health Assessment Questionnaire (HAQ) was originally developed in 1978 by James F. Fries, and colleagues at Stanford University. It was one of the first self-report functional status (disability) measures and has become the dominant instrument in many disease areas, including arthritis. It is widely used throughout the world and has become a mandated outcome measure for clinical trials in rheumatoid arthritis and some other diseases.

The HAQ was developed as a comprehensive measure of outcome in patients with a wide variety of rheumatic diseases, including rheumatoid arthritis, osteoarthritis, juvenile rheumatoid arthritis, lupus, scleroderma, ankylosing spondylitis, fibromyalgia, and psoriatic arthritis. It has also been applied to patients with HIV/AIDS and in studies of normal aging. It should be considered a generic rather than a disease-specific instrument. Its focus is on self-reported patient-oriented outcome measures, rather than process measures.

Abbreviated Name: HAQ Author(s): James F Fries

Purpose: To assess the difficulty in performing activities of daily living (Originally designed for adult arthritics, it has been used in a wide range of research settings)

Population: Adult

Age Range : 18 years and older

Type of Instrument: Disability/Physical functioning, Quality of Life Mode of Administration:

Rater: Self-/ Interviewer/ Telephone-administered

Time required: HAQ Disability Index&Pain Scale: 5 mins / Full HAQ: 20 to 30 mins

Response Options: Visual Analog Scale (VAS) for Pain and Global Health Assesment Four-item ordinal Scale for HAQ Disability Index from 0 (no disability) to 3 (completely disabled) Scoring: Global score: Minimum score: 0 / Maximum score: 3

Scores by dimension

Scores by each item: from 0 (no disability) to 3 (completely disabled) Score Direction: Lower scores show better QoL (evident from each measure)

Number of Items: HAQ Disability Index: 20, Pain Scale: 1, Global Health Status: 1 Original Language: English

Existing Translations : Afrikaans, Arabic, Chinese, Croatian, Czech, Danish, Dutch, Finnish, French, German, Greek, Hebrew, Hungarian, Italian, Norwegian, Polish, Portuguese, Russian, Slovak, Spanish, Swedish, Thai, Turkish, Ukrainian.

Copyright: Stanford University

Contact for information and permission to use:

Judy Rechsteiner

Division of Immunology & Rheumatology

Stanford University School of Medicine

1000 Welch Rd.Suite 203

Palo Alto, CA 94304

Phone: 650/725-4612

Fax: 650/723-9656

Email: [email protected]

Dimensions covered by the questionnaire :

• dressing and grooming (2 items)

Minimal Important Difference (MID): The HAQ index is very responsive to change, and usually is the most sensitive to change of the available outcome measures. It is used in the overwhelming majority of studies of rheumatoid arthritis and recommended by the United States Food and Drug Administration and the American College of Rheumatology. Some investigators have suggested that the Minimal Clinical Important Difference is 0.22; others have maintained that 0.10 or thereabouts is clinically important.

Key References:

1. Bruce B. and Fries J. The Stanford Health assesment Questionnaire (HAQ):A review of its history, issues, progress and documentation. J Rheumatol 2003;30(1):167-78.

Over the last 2 decades, assessment of patient health status has undergone a dramatic paradigm shift, evolving from a predominant reliance on biochemical and physical measurements to an emphaThesis upon health outcomes based on the patient's personal appreciation of their illness. Health Assessment Questionnaire (HAQ), published in 1980, was among the first instruments based on patient centered dimensions. The HAQ was designed to represent a model of patient oriented outcome assessment and has played a major role in diverse areas such as prediction of successful aging, inversion of the therapeutic pyramid in rheumatoid arthritis (RA), quantification of nonsteroidal antiinflammatory drug gastropathy, development of risk factor models for osteoarthrosis, and examination of mortality risks in RA. The HAQ has established itself as a valuable, effective, and sensitive tool for measurement of health status. It has increased the credibility and use of validated self-report measurement techniques as a quantifiable set of hard data endpoints and has contributed to a new appreciation of outcome assessment. We review the development, content, and dissemination of the HAQ and provide reference sources for its uses, translations, and validations. We discuss contemporary issues regarding outcome assessment instruments relative to the HAQ's identity and utility. These include: (1) the issue of labeling instruments as generic versus disease-specific; (2) floor and ceiling effects in scales such as "disability"; (3) distances between values on scales; and (4) the continuing introduction of new measurement instruments and their potential effects.

2. Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum 1980; 23:137-45.

A structure for representation of patient outcome is presented, together with a method for outcome measurement and validation of the technique in rheumatoid arthritis. The paradigm represents outcome by five separate dimensions: death, discomfort, disability, drug (therapeutic) toxicity, and dollar cost. Each dimension represents an outcome directly related to patient welfare. Quantitation of these outcome dimensions may be performed at interview or by patient questionnaire. With standardized, validated questions, similar scores are achieved by both methods. The questionnaire technique is preferred since it is inexpensive and does not require interobserver validation. These techniques appear extremely useful for evaluation of long term outcome of patients with rheumatic diseases.

3. Fries JF. The hierarchy of quality-of-life assessment, the Health Assessment Questionnaire (HAQ), and issues mandating development of a toxicity index. Control Clin Trials 1991; 12:106S-17S.

Health, as defined by the World Health Organization, encompasses the more redundant and cumbersome phrase "health-related quality of life." Valuations by patients naturally separate this entity into the primary dimensions of absence of death, disability, discomfort, drug toxicity, and destitution. These dimensions separate naturally into subdimensions, and the subdimensions into components, thus providing a hierarchy under which assessment of particular aspects of health may be placed. In the clinical trial situation, it is essential that all dimensions always be assessed and reported, because otherwise, misleading conclusions may be drawn. On the other hand, it is much less important which assessment instrument is chosen, or how much detail is assessed for each dimension. The Health Assessment Questionnaire (HAQ) has been developed under a hierarchical conceptual model and widely used; its characteristics are described. A new index for measurement of drug toxicity has been developed for the HAQ, and its crucial role in comparing treatments in a clinical trial discussed. Issues in reliably describing comparative drug toxicity are developed, a toxicity index presented, and some preliminary results and conclusions outlined. With the ability to quantitatively describe drug toxicity, health assessment becomes conceptually more complete.

THE HEALTH ASSESSMENT QUESTIONNAIRE© Stanford University School of Medicine Division of Immunology & Rheumatology

INTRODUCTION

The Health Assessment Questionnaire (HAQ) was originally developed in 1978 by James F. Fries, MD, and colleagues at Stanford University. It was one of the first self-report functional status (disability) measures and has become the dominant instrument in many disease areas, including arthritis. It is widely used throughout the world and has become a de facto mandated outcome measure for clinical trials in rheumatoid arthritis and some other diseases.

The initial paper, published in 1980 (see key journal references at end of this document), has been the most cited article in the rheumatology literature. A 1995 review discusses more than 200 publications on the reliability, validity, and its applicability in multiple settings and languages. The present number of citations is in excess of 400.

Purpose

The HAQ was developed as a comprehensive measure of outcome in patients with a wide variety of rheumatic diseases, including rheumatoid arthritis, osteoarthritis, juvenile rheumatoid arthritis, lupus, scleroderma, ankylosing spondylitis, fibromyalgia, and psoriatic arthritis. It has also been applied to patients with HIV/AIDS and in studies of normal aging. It should be considered a generic rather than a disease-specific instrument. Its focus is on self-reported patient-oriented outcome measures, rather than process measures.

User Permission

The HAQ is copyrighted only so that it will be used unmodified, thus preserving the validity of results, and so that we retain a record of use. However, we consider the HAQ to be in the public domain, with the request that users cite relevant HAQ articles(s) in their publications (see key journal references at the end of this document). There is no charge for permission.

The "FULL" HAQ

Long term outcome assessment best includes the Full five-dimension HAQ, which is a comprehensive outcome instrument that assesses a hierarchy of patient outcomes in four domains: 1) disability, 2) discomfort and pain, 3) drug side effects (toxicity) and 4) dollar costs. Specific drug-associated side effects are classified according to their severity and whether the drug was stopped. Dollar costs are divided into direct and indirect costs. Direct costs include hospitalization, surgery, nursing home care, physician and health worker visits, medications, laboratory tests, x-rays, aids and devices, non-traditional treatments, assistance with personal care, housework and such, transportation and any additional costs related to medical care. Utilization of these services is determined and converted into dollar costs. Indirect costs are those associated with productive days lost for the employed, housewives, students and retired persons, and changes in lifestyle and activities for the patient and family.

Items address normal daily activities, employment status, marital status, and living arrangements. Death, while obviously not a self-report outcome, is a requisite part of the conceptual model of patient outcome. In the United States, this is usually accomplished using the National Death Index.

The first two domains, often referred to as "The HAQ", the "short" or the "2-page" HAQ, comprise the HAQ Disability Index (HAQDI) and Pain Scale. They can be used independently, frequently are and have been maintained as constant since 1983. The additional domains included in the Full HAQ (e.g., drug side effects [toxicity], dollar costs, plus other ancillary items such as demographics and health care utilization) have primarily been used for research purposes. These have over the years been tailored for specific hypotheses or research questions by ARAMIS (Arthritis, Rheumatism, and Aging Medical Information System).

The time frames differ among the various sections in the Full HAQ. Data on disability and pain are based on the PAST WEEK; for medications, symptoms, side effects and costs, data is based on the PAST SIX MONTHS.

QUESTIONNAIRE ADMINISTRATION

The HAQ is usually self-administered, but can also be given face-to-face in a clinical setting or in a telephone interview format by trained outcome assessors, and has been validated in these settings. The questionnaire is typically mailed to patients every six months, and they are asked to complete it without additional instructions. Follow-up phone calls are sometimes needed to obtain missing data or to clarify ambiguous responses in the high-quality research data applications. The HAQDI and Pain Scale can be completed in approximately five minutes. The Full HAQ takes 20 to 30 minutes to complete.

THE HAQDI

The HAQ indicates the extent of the respondent's functional ability. It has been widely used for research purposes in both experimental and observational studies, as well as in clinical settings. The HAQDI is sensitive to change and is a good predictor of future disability and costs. It has been shown to be reliable and valid in different languages and contexts. Test-retest correlations have ranged from 0.87 to 0.99. Correlations between interview and questionnaire format have ranged from 0.85 to 0.95. Validity has been demonstrated in literally hundreds of studies. There is consensus that the HAQDI possesses face and content validity. Correlations between questionnaire or interview scores and task performance have ranged from 0.71 to 0.95 demonstrating criterion validity. The construct/convergent validity, predictive validity and sensitivity to change have also been established in numerous observational studies and clinical trials. The HAQDI has also demonstrated a high level of convergent validity based on the pattern of correlations with other clinical and laboratory measures.

The HAQDI is designed to assess patients' USUAL abilities using their usual equipment. The time frame for the disability questions is the PAST WEEK. Some patients have questioned whether their response should reflect a particularly good or bad time, which is out of the time frame requested, because they feel that their response may be missing those times when their functional ability changes. However, by repeating the HAQ at specific and regular time intervals, patterns of function can be examined. Inquiring about these activities only when patients are feeling particularly good or bad would result in inaccurate and biased data. The score is not modified if they have difficulties sometimes or require help only occasionally. Patients usually find the HAQDI entirely self-explanatory, and clarifications are seldom required.

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