AIDSQuest > Appendix F > Part 1

Excerpted from “A review of approaches and instruments for assessing health-related quality of life”

Part 1: Generic Instruments

(continued from page 1)

WHOQOL-100 (World Health Organization Quality of Life 100 item questionnaire)
The WHOQOL-100, Hindi was designed to determine the impact that disease and health intervention has on QOL. One of the initial testing sites was in India at the New Delhi center as part of the WHOQOL project in 1997. The WHOQOL-100-Hindi categorizes 100 items in four dimensions (physical, psychological, social, and environmental health) and 24 facets. Each facet contains four items and is rated on a five-point scale. Also included is one facet examining overall QOL and general perceptions of health (The WHOQOL Group 1998). The WHOQOL-100, Hindi was reported to be qualified for use in health care settings to provide a comprehensive assessment of QOL (Saxena, Chandiramani, and Bhargava 1998).

Strengths: The WHOQOL-Bref has been developed through rigorous methodological development over a number of years for measuring quality of life in India (WHOQOL Group 1993). The main analysis found that data from 15 worldwide centers in developing and western countries supported the notion that some aspects of QOL are universal throughout different cultures (The WHOQOL Group 1999). Statistical analysis of the WHOQOL-100, Hindi questionnaire shows that there are basic factors inherent to quality of life worldwide and that they do not differ substantially across cultures. The WHOQOL-100, Hindi provides an internally reliable and valid method for assessing QOL. The WHOQOL is being expanded to test the universality of the WHOQOL-100, Hindi in other cultures beyond the initial 15 (The WHOQOL Group 1998). This instrument has been translated into Hindi, Tamil, and English (Prabha Chandra, personal communication,23 September, 1999).

Limitations: The data were collected using a cross-sectional design and test-retest reliability in a longitudinal study has yet to be conducted, but this is currently underway. The sensitivity of this measurement is also currently being tested. Until longitudinal studies are conducted to determine further validity of this questionnaire it appears that the major limitation of this instrument is its long length.

WHOQOL-BREF (The WHO Quality of Life Abbreviated Questionnaire)
The WHOQOL-BREF, Hindi was developed to provide a brief version of the WHOQOL-100, Hindi for use in studies needing the practicality of a short questionnaire, in large-scale epidemiological studies, for audit, and clinical work and intervention evaluation (World Health Organization 1997). The WHOQOL-Bref encompasses 24 facets and provides a profile of scores on four dimensions of quality of life: physical health, psychological, social relationships, and environment (The WHOQOL Group 1998). Each facet is rated on a five-point scale. This instrument also provides one global rating on QOL and general health.

Strengths: The WHOQOL-Bref has been developed through rigorous methodological development over a number of years for measuring quality of life in India (WHOQOL Group 1993). The WHOQOL-Bref, Hindi correlated well (at about 0.9) with the WHOQOL-100, Hindi. The WHOQOL-Bref, Hindi may adequately be used in place of the WHOQOL-100, Hindi because it includes items directly from each facet of the WHOQOL-100, Hindi. The WHOQOL-Bref, Hindi provides an aggregate score as well as scores in four quality of life related dimensions. The dimension scores exhibited good content validity, discriminate validity, test-retest reliability, and internal consistency. This instrument should provide a quick, useful alternative to the WHOQOL-100, Hindi where time is a consideration in administration and scoring of the instrument. It also covers a large number of domains that are integral for assessing QOL (WHOQOL Group 1998). The WHOQOL-Bref, Hindi is available in Tamil and is currently being developed for use in the Kannada language as well (Prabha Chandra, personal communication, 23 September, 1999).

Limitations: This instrument does not provide an assessment of the individual facets within the dimensions (Gill & Feinstein 1994; Saxena, Chandiramani, & Bhargava 1998). This instrument is longer than some other measures (i.e., the SF-12).

MOS (Medical Outcomes Study-derived quality of life measures)
Questionnaires developed from the Medical Outcomes Study are the most widely used health status instruments in HIV research (Wu et al. 1997b). These measures include the MOS-HIV, SF-12, SF-20, SF-21, SF-36, SF-38, SF-56, and the HIV Cost and Service Utilization Study (HCSUS). There is also a version called the IQOLA being developed for international use. These questionnaires cover between two and 11 dimensions and utilize between 12 to 56 questions (as per their names). The MOS instruments generally take a short time to complete (< 15 minutes) with sub-scales scored from 0-100. Most of these instruments provide overall scores and often include the separation of physical and mental health scores. In addition, there is extensive credibility for the construct and predictive validity, reliability, and responsiveness of these instruments as these instruments have been administered to over 20,000 patients (Wu et al. 1997a). The most commonly used instruments for HIV research are the MOS-SF-36, MOS-SF-20, and the MOS-HIV.

MOS-SF-36 (Medical Outcomes Study 36 item questionnaire)
This multidimensional tool is the most widely used health status instrument worldwide (Hays & Shapiro 1992; Wood-Dauphinee 1999). This instrument uses a short 36 item questionnaire on eight dimensions: physical functioning, bodily pain, role limitations due to physical health problems, role limitations due to personal or emotional problems, general mental health, social functioning, energy/fatigue, and general health perceptions. In addition to this, it provides a single item for perceived change in health. Items are scored and aggregated to provide a scale ranging from 0-100 (0 = poor health and 100 = good health).

Strengths: The SF-36 can be either self-administered or administered by a trained interviewer and takes about 5-10 minutes to complete (Bowling 1997). This questionnaire has high internal consistency and strong psychometric properties (Vanhems et al. 1996). The SF-36 has demonstrated high reliability (Hays & Shapiro 1992). The SF-36 has good responsiveness to change in clinical conditions (Bowling 1997). The results can be machine scored and has been evaluated in large population studies (Kaplan 1998).

Limitations: The sub-scales are not aggregated to give the global score making it more complicated to score. Mean scores are obtained on each sub-scale, which has a tendency to distort the results due to outlying values. The questionnaire has not been developed through extensive consultation with the general population. This questionnaire does not contain age-specific questions and may not be appropriate at each age level (Kaplan 1998). The bodily pain scale has been reported to show low convergent validity with severity of illness and independent pain scores. Furthermore, floor and ceiling effects have been reported for the SF-36 (Bowling 1997).

MOS-SF20 (Medical Outcomes Study 20 item questionnaire [Short Form])
This instrument utilizes a brief 20-item questionnaire for assessing HRQOL in both a cross-sectional and a longitudinal design (Hays & Shapiro 1992). The SF-20 consists of six dimensions: physical functioning, mental health, role functioning, social functioning, health perceptions, and pain.

Strengths: Data for the SF-20 have shown high reliability and construct validity.

Limitations: The SF-20 has shown floor effects with hospitalized patients and contains no sexual dimension.

IQOLA (International Quality of Life Assessment Project)
The IOQLA project was designed to provide validated translations for use in international health research and multinational clinical trials. A modification of the MOS-SF-36, has been translated and adapted in 15 European countries (Sullivan, 1994). The IQOLA measures the same sub-dimensions as the MOS-36, but the questionnaire needed to be shorter so the SF-12 was adapted for use with two dimensions - physical and mental health (Gandek et al. 1998). This shorter version has high product moment correlations between the summary measures of the SF-36 and the SF-12 ranging from .94-.96 for the physical dimension and from .94-.97 for the mental dimension (Gandek et al. 1998).

Strengths: This project is currently being translated and developed for use in over 40 countries, including India and other developing countries (Gandek et al. 1998).

Limitations: Summary scores from the European countries differed from US measures necessitating further research into the IQOLA's cross-country compatibility (Gandek et al. 1998).

Nottingham Health Profile (NHP)
The NHP has been influential in Europe and consists of two parts. The first part contains 38 items in six dimensions: sleep, physical mobility, energy, pain, emotional reactions, and social isolation. These 38 items are rated on level of relative importance, then rescaled to allow them to vary between 0 and 100 within each dimension (Kaplan 1998). The second part includes seven statements related to health-affected areas of life: employment, household activities, social life, home life, sex life, hobbies and interests, and holidays (Kaplan 1998). For each statement, the respondent indicates if a health condition affected that area of his/her life. The instrument is self-administered.

Strengths: This questionnaire is short and easy to administer with patients or the general population. Many studies have provided evidence for this instrument's validity and reliability (Kaplan 1998). This instrument was derived from definitions of health given by lay people in the community and designed with easily interpretable language that meets minimum reading requirements (Kaplan 1998). This instrument is useful for the assessment of severe health problems (Bowling1997).

Limitations: The NHP was not designed to measure HRQOL and does not make relative weights across dimensions available for comparing dimensions directly with each other (Kaplan 1998). Hunt (1984) pointed out that this instrument is not sensitive to detecting health conditions or mild symptom severity and diagnostic data would be needed to explain what kind of health problem was experienced (cited in Bowling 1997: 44). Furthermore, this instrument may not detect minor health improvements (Bowling 1997). The NHP focuses on negative experiences while excluding the positive experience of a condition or disease. In addition, some of the statements in the second part of the questionnaire may not be relevant for some populations (Bowling 1997).

SIP (Sickness Impact Profile)
The SIP was designed as a measure of perceived health status to measure across demographic and cultural groups and to provide outcome measures for health care in a wide variety of health conditions and diseases (Bowling 1997). The SIP is a 136-item self- or interview-administered health status questionnaire that is behaviorally based and utilizes two HRQOL dimensions; psychosocial and physical. Everyday activities in 12 facets are measured and include: sleep and rest, emotional behavior, body care and movement, home management, mobility, social interaction, ambulation, alertness behavior, communication, work, recreation and pastimes, and eating. Patients mark items that describe themselves on that day in terms of individual health. The SIP is scored according to the number and type of items endorsed. Scoring can be done for each facet, dimension and composite HRQOL with a range of 0-100 (the lower the score, the better the patients' health status) (Bowling 1997).

Strengths: The SIP may be interviewer- or self-administered. The SIP is able to discriminate between severity of sickness and has been reported to have good convergent and discriminant validity. The SIP has good test-retest reliability and high internal consistency. The SIP has been successfully used in clinical trials and can assess the impact of illness among the chronically ill (Bowling 1997).

Limitations: The SIP emphasizes dysfunction related to sickness in daily activities rather than disease and doesn't measure subjective QOL facets such as feelings. The SIP also doesn't measure positive functioning. The SIP takes about 20-30 minutes to complete and requires a large amount of time to train the interviewers. The results of the scores can be unclear and are sometimes positively skewed which doesn't allow it to clearly measure improvements in health. The SIP has also been reported to be insensitive to change over time and condition, yet these results are mixed (Bowling 1997).

FQLS (Fanning Quality of Life Scale)
The FQLS is a scale designed for evaluating the impact of HIV infection on psychological and physical health, daily activities, social activities, relationship with healthcare provider, and personal identity (Vanhems et al. 1996).

Strengths: The FQLS has reported scores of acceptable validity and reliability. This scale included questions on relationships with friends/lovers (Vanhems et al. 1996).

Limitations: This is a relatively new instrument that needs to be validated in other populations and stages of disease (Vanhems et al. 1996).

Global Indices

A VAS
A single item assessment of a patient's global health-related quality of life that uses a scale from 0-100 (worst imaginable health state to best imaginable).

Strengths: Provides a reliable, valid assessment of HRQOL that is easy to complete and has widely been used to assess patient outcomes.

Limitations: It only provides a global rating of HRQOL.

Patient-preference Scales

QWBS (Quality of Well-Being Scale)
Developed to operationalize "well-being," the QWBS was an attempt to provide an alternative to a cost-benefit analysis (Bowling 1997). This standard HRQOL instrument combines mortality with quality of life estimates and gives a summary of health status as quality adjusted life years. The content of the QWBS scale consists of three dimensions of daily activity: mobility, physical, and social activity. This instrument uses weighted scores that are then transformed into a single number. The QWBS quantifies HRQOL into a single number from 0-1 (death to perfect health). This instrument can also be scored and used to achieve a profile of scores.

Strengths: This instrument can be applied to any disease and can be used in general populations. The instrument has good reliability, content, construct, and criterion validity. The QWBS gives an easy to understand overall impact of medical and mental health score for HIV patients. The QWBS has shown the ability to predict outcomes among HIV patients and includes death, which avoids having death appear to improve the health status of the population. This also permits the ability to distinguish between individuals with similar functional disability by weighting items to consider if the illness is terminal. The QWBS has been shown to correlate with functional ability and broader health status scales. The questionnaire takes about 10-15 minutes to complete and can be given to proxy respondents when a patient is unavailable. The QWBS's universality allows it to be used in policy analysis (Bowling 1997).

Limitations: The QWBS needs to have a meticulously trained interviewer to administer the questionnaire and the interview uses a long, 30-page manual (Bowling 1997). This instrument is weighted more toward physical aspects of HRQOL than psychosocial. This questionnaire also has no HIV specific questions (Hays & Shapiro 1992).

Q-TWIST (Time without disease symptoms and drug toxicity)
Assesses QOL and the quantity of life after adjustment. This instrument was specifically designed to estimate the ZDV impact on QOL (Vanhems et al. 1996).

Strengths: The Q-TWIST estimates both quality of life and quantity of life at the same time (Vanhems et al. 1996).

Limitations: May be difficult to apply outside of clinical trials because symptoms must be correlated with repeated biological tests, it has no psychosocial or behavioral dimensions and has no self-assessment items (Vanhems et al. 1996).

< Page 2 | Part 2: Specific Instruments >


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    This page updated
    21 August 2006


     
    AIDSQuest

    What Is the HIV/AIDS Survey Library?

    HIV/AIDS Topics and Selected Survey Questions

    Full Instruments and Overviews of Surveys: Development and Use

    Behavioral and Social Theories Commonly Used in HIV Research

    Appendix A
    Ethical Approaches to Gathering Information from Children and Adolescents in International Settings: Guidelines and Resources

    Appendix B
    Researching Violence Against Women: A Practical Guide for Researchers and Activists

    Appendix C
    Working Report Measuring HIV Stigma: Results of a Field Test in Tanzania

    Appendix D
    Evaluating the Literacy Level of Your Survey: The SMOG

    Appendix E
    Selected Bibliography of Research on Validity and Reliability of HIV/AIDS-related Survey Instruments

    Appendix F
    Review of Instruments Assessing Health-related Quality of Life