AIDSQuest: The HIV/AIDS Survey Library | Appendix F Review of instruments assessing health-related quality of life

AIDSQuest: The HIV/AIDS Survey Library
Appendix F: Review of Instruments Assessing
Health-related Quality of Life

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

Part 2: Specific Instruments

WHOQOL-HIV/AIDS (World Health Organization Quality of Life HIV/AIDS module)
This module of the WHOQOL is designed specifically for use in the HIV/AIDS population. The WHOQOL-HIV/AIDS has been translated into Kannada, Tamil and Hindi (Prabha Chandra, personal communication, 23 September, 1999). Standardization of the instrument in India is currently taking place and should be completed in February 2000 (Miriam Lotfy, personal communication, 27 September 1999).

MOS-HIV (Medical Outcomes Study-HIV)
Taken from the MOS Short Form, this instrument is a brief, comprehensive 35-item HRQOL questionnaire. The MOS-HIV includes a global health assessment and these 10 dimensions of HRQOL: health perceptions, pain, physical functioning, role functioning, social and cognitive functioning, mental health, energy/fatigue, health distress, and quality of life. These scales discriminate between symptomatic and asymptomatic patients. The MOS-HIV is self-administered and takes a relatively short time (< 5 minutes) to complete. Subscales are scored on a 0-100 scale with 100 indicating better health (Wu et al. 1997c). This instrument also includes a single-item measurement to assess health transition. The MOS-HIV also provides both a physical and mental health summary score. The MOS-HIV has been used as a standard for hypothesis testing on newer instruments (Wu et al 1997c).

Strengths: The MOS-HIV provides good reliability with internal consistency reliability scores ranging from 7.0 to.92, most Chronbach alpha coefficients exceed 8.0 and it has good construct validity (Burgess 1993; Redvicki et al. 1998; Wu et al. 1997c). This instrument is sensitive to changes in QOL over time. The MOS-HIV has also demonstrated that it discriminates between groups, predicts outcomes, it correlates with concurrent measures of health and is responsive to change over time. This questionnaire also has acceptable reliability and validity across various demographic groups. The questionnaire is easy to administer, complete, and score. The MOS-HIV has been widely used in clinical trials and observational studies (Wu et al. 1997c ). The MOS-HIV provides a profile of scores that is particularly useful in obtaining the detailed patient descriptions needed for cohort studies (Copfer et al. 1996). This instrument can be either self-administered or interview-administered.

Limitations: The MOS-HIV has shown ceiling effects, causing a potential lack of responsiveness. The MOS-HIV needs to be compared to other HIV specific measures of HRQOL (Wu et al. 1997b). The MOS-HIV needs to be compared to other HIV specific measures of HRQOL (Wu et al. 1997b).

Revised FAHI (Functional Assessment of Human Immunodeficiency Virus Infection)
This instrument has been developed by combining the FACT-G for cancer and measures quality of life on the following sub-scales: physical well being, emotional well being, function and global well being, social well being, cognitive functioning, and three items reflecting both general illness and HIV/AIDS specific HRQOL concerns. This tool has recently been revised with content reflecting HIV/AIDS specific concerns that also include general chronic illness (Peterman, Cella, & McCain 1997). This tool is appropriate for clinical practice and trials and allows for both individual sub-scale scores and a global quality of life score (Peterman et al. 1997).

Strengths: This instrument has been shown to have good internal consistency (.91 for the total scale and ranged from .73 to .90 for the subscales), has strong construct validity, known group's validity and is sensitive to change. The FAHI has good psychometric properties that are broad in covering emotional and social concerns for HIV/AIDS patients that may be useful for asymptomatic patients or early stage HIV. This instrument contains the entire FACT-G (for cancer) and HIV/AIDS specific concerns, thus allowing for cross-disease comparison. This instrument is short, easy to score, and has been translated into a nine languages (Peterman et al. 1997).

Limitations: Further investigation is needed to determine the validity of data for asymptomatic patients (Peterman et al. 1997).

HOPES (HIV Overview of Problems/Evaluation)
This self-administered assessment tool is used to measure HRQOL and rehabilitation needs for HIV patients. The revised questionnaire consists of 142 items. Dimensions are divided into the following five classifications: physical, psychosocial, medical interaction, sexuality, and partner. There is one dimension leftover that is miscellaneous. These dimensions can be added to provide a global score, profile scores of the six dimensions and summary scores of the 33 sub-scales (De Boer et al. 1996).

Strengths: The HOPES has demonstrated good internal consistency reliability and good face and content validity. This survey has convergent and item-discriminate validity and can discriminate between asymptomatic and symptomatic patients. The HOPES was also able to record changes in QOL over time and was responsive to CD4 counts over time. The HOPES allows for detailed reports of HIV infected patients' daily problems, it includes sexuality and health care worker relationships not generally captured in other HRQOL instruments (De Boer et al. 1996).

Limitations: The revised HOPES is a long, detailed survey that may require some assistance in filling out. The global score did not change over time, indicating that it may be necessary for the global assessment to be validated by checking the summary scales (De Boer et al. 1996).

MQOL (McGill Quality of Life Questionnaire)
Consisting of 16 questions, the MQOL measures existential concerns (freedom, meaning of life, death) with little emphasis given to physical functioning. This self-administered questionnaire attempts to determine positive effects from HIV/AIDS.

Strengths: Short questionnaire that has good validity.

Limitations: Has only acceptable reliability ratings and must be used with other instruments.

AIDS-HAQ (Health Assessment Questionnaire)
The AIDS-HAQ includes nine subscales: disability, energy, general health, pain, cognitive functioning, mental health, social functioning, health distress and symptoms.

Strengths: This instrument has demonstrated the ability to distinguish between the severity of disease. The subscales have high internal consistency (.79-.88) and it demonstrated concurrent validity as decrements with disease progression on all domains except cognitive functioning was significant. This instrument provided a thorough assessment of HRQOL in early HIV+ individuals. This instrument may be useful for assessing within group changes and comparing group differences in observational research (Lubeck & Fries 1997).

HAT-QOL (HIV/AIDS-Targeted Quality of Life Instrument)
This instrument is one of the first HIV/AIDS targeted QOL questionnaires that was developed with QOL concerns given by individuals with HIV/AIDS (Homes & Shea 1998). Nine dimensions were identified for measuring quality of life in HIV/AIDS patients: overall function (OF), sexual function (SF), disclosure worries (DW), health worries (HW), financial worries (FW), HIV mastery (HM), life satisfaction (LS), medication concerns (MS) and provider trust (PT).

Strengths: Results of a study by Holmes and Shea (1997) found that the psychometric properties were good on dimensions of OF, DW, HW, FW, and LS for asymptomatic HIV seropositive individuals. Assessments for validity using HIV disease severity and sociodemographic variables indicated expected relationships across all dimensions of the instrument. This tool displays good psychometric properties with low floor and ceiling effects, good internal consistency, and there is evidence for construct validity. (Holmes & Shea 1998) (PDF or Word)

MQOL-HIV (Multidimensional Quality of Life Questionnaire-HIV/AIDS)
The MQOL-HIV is a multi-dimensional HRQOL measure designed for PLHA. This instrument utilizes 40 items on 10 HRQOL dimensions: physical function, medical care, social support, physical health, cognitive function, intimacy, social function, finance, sexual function, and mental health.

Strengths: The questionnaire may be self administered or interview-administered and can be completed in less than 10 minutes. This instrument has been shown to be internally consistent, reliable, and sensitive to symptom change over time. The MQOL-HIV may be helpful by supplementing clinical measures of HIV/AIDS. (http://www.neri.org/HTML/INSTRU/instmqol.htm)

Function-specific Instruments

KPS (Karnofsky Performance Scale)
The KPS is widely used in HIV-related clinical trials to assess health status in HIV medicine and research (O'Dell et al. 1995). The Karnofsky Performance Scale assesses physical function, symptoms and ability to work, which are aggregated to provide a global rating scale from 0 to 100 (normal to moribund).

Strengths: The KPS is relatively simple to use and values are easily obtained. The KPS is often used in addition to other instruments because it is simple and fast to complete. The KPS has high predictive validity; for example, low-moderate KPS scores predicted low survival in AIDS patients (Bowling 1997; O'Dell et al. 1995). Use of the KPS with the QWBS has permitted efficacious treatment assessment in clinical trials (Vanhems et al. 1996).

Limitations: The Karnofsky Scale gives only information on physical dysfunction and doesn't give information on well being, social, or psychological dimensions (Bowling 1997; O'Keefe & Wood 1996). It is often criticized for its lack of metric examination and ceiling effects for some individuals. The KPS may have difficulty assessing clinical change over time (O'Dell et al. 1995). The procedure for scoring the instrument has not been validated (Bowling 1997). The KPS is strongly weighted toward physical dimensions of QOL and has shown mixed results when tested for inter-rater reliability (Bowling 1997).

ADL (Index of Activities of Daily Living)
One of the oldest disability scales, the ADL index developed by Katz et al (1963) was developed to describe functional states of elderly patients (cited in Bowling 1997: 25). It is currently used for assessing health status for health care needs. This scale has patients rank five categories of 'need': no disability, restricted activity with no chronic conditions, restricted activity with chronic condition, mobility limitations and bed disability (Bowling 1997). Patients are rated on ordinal scales by interviewers on the ability to bathe, dress, transfer (or move to a chair, use the toilet, continence and feed oneself. Unweighted individual scales are aggregated to provide an composite single score (Bowling 1997).

Strengths: This scale was able to predict mortality. It is a useful index that has had widespread use.

Limitations: Using a single index reduces variability information. There isn't much evidence for validity. ADL scores for mobility provided moderate correlation (.50), while house confinement was very low (.37). This index is not sensitive to minor changes in severity of disease and it doesn't take into consideration how one adapts to one's environment. Few tests of reliability have been conducted and it doesn't have strong inter-rater reliability. The range of disabilities are not complete (Bowling 1997).

Condition-specific Instruments

EORTC QLQ-C30 (European Organization for Research and Treatment of Cancer-Quality of Life Questionnaire-HIV adaptation)
The QLQ-C30 is a 30-item questionnaire that is self-administered. This instrument was first developed for use with cancer patients. The C30 uses five functional scales, (physical, role, emotional, cognitive and social functioning), three symptom scales (pain, fatigue, and nausea and vomiting) and a global QOL scale. HRQOL is scored on a 0-100 scale.

Strengths: This instrument takes less than 10 minutes to complete and has shown acceptable levels of validity and reliability. The instrument will be available in Hindi. Scales were able to assess distinct dimensions of HRQOL (http://www.eortc.be/home/qol/QLQ-C30.doc).

FACT-G (Functional Assessment of Cancer Therapy-General questionnaire)
This standard HRQOL assessment is administered to cancer patients and other patients with life threatening conditions. HRQOL measurement is on four dimensions: physical, social/family, emotional, and functional well-being. This 27-item instrument may be summed to produce profile scores and an overall QOL score (Cella et al. 1996).

Strengths: The FACT-G is short (< 5 minutes) and easy to administer. The FACT-G has been validated in over 2000 patients with cancer and has high internal consistency. This instrument has the ability to differentiate between patients according to disease stages and is sensitive to change over time. The FACT-G is a 'core' instrument that can also be combined with an HIV component to create the FAHI (Functional assessment of HIV) (Cella et al. 1996). The FACT-G has been translated into many languages.

For additional information please contact:
Horizons
Population Council
4301 Connecticut Ave. NW, Suite 280
Washington, DC 20008
Telephone: +1 202 237 9400
Facsimile: +1 202 237 8410
E-mail: horizons@popcouncil.org

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This page updated
21 August 2006