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AIDSQuest: The HIV/AIDS Survey Library 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) 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) 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) MOS-SF-36 (Medical Outcomes Study 36 item questionnaire) 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]) 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) 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) 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) 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) 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 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) 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) 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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