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The Alzheimer Disease Related Quality of Life™ (ADRQL™) is a research instrument used to assess health-related quality of life (HRQOL) in persons with Alzheimer disease (AD) and other types of dementia. The ADRQL was designed to address aspects of quality of life that informal and formal caregivers and clinicians regard as important and to detect change over time in HRQOL in persons with AD. The ADRQL was developed to meet the needs of researchers and clinicians for a disorder-specific measure of HRQOL for use in evaluating therapeutic interventions for persons with AD across various care settings and various stages of the disease. The ADRQL may be used as an outcome measure in determining efficacy and effectiveness of behavioral interventions, environmental settings and drug treatments.
If you wish to use the ADRQL research instrument, please email Betty Black,Ph.D. at firstname.lastname@example.org
Development of the ADRQL
The ADRQL was developed by the systematic involvement of panels of family caregivers, health care professionals who provide care to people with AD and national experts in the field of Alzheimer disease. Representatives of these groups participated in an iterative process, based on qualitative research methods, designed to identify and select items and the major domains important to HRQOL for persons with AD.
One assumption underlying the development of the ADRQL is that the included items and domains vary in their contribution to the concept of quality of life. By developing preference weights for the items, these differences were incorporated into the measurement of HRQOL. These preference weights were used to assign a scale value to each ADRQL item for scoring purposes.
Description of the ADRQL
The original ADRQL consists of 47 items that describe behaviors associated with 5 domains important to HRQOL in persons with AD. Positively and negatively worded items are included in each domain. The revised 40-item version of the ADRQL, with improved measurement properties, is recommended for use over the original version. The 5 domains included in the ADRQL are:
|Original 47-Item ADRQL||Revised 40-Item ADRQL|
Social Interaction (12 items)
Awareness of Self (8 items)
Feelings and Mood (15 items)
Enjoyment of Activities (5 items)
Response to Surroundings (7 items)
Social Interaction (12 items)
Awareness of Self (8 items)
Feelings and Mood (12 items)
Enjoyment of Activities (4 items)
Response to Surroundings (4 items)
Administering the ADRQL
The ADRQL is administered to a caregiver of the person with AD. The respondent may be either an informal caregiver (e.g., a family member, companion or close friend) or a formal caregiver (e.g., a nurse, nurse’s aide, activity therapist or a paid home health care provider). In either case, the respondent must have extensive recent knowledge of the behaviors and daily activities of the person with AD. The respondent is not asked to assess the individual’s HRQOL, but rather the caregiver is asked to identify recently observed behaviors that reflect various aspects of the person’s HRQOL.
The ADRQL is administered using a standardized, structured interview format. Since this method of administration allows interviewers freedom only within clearly defined and relatively narrow limits, the ADRQL User’s Manual should be consulted for interviewer training. The ADRQL Training Video provides instructions and a demonstration of how to administer this instrument and how to handle some of the more typical types of responses from caregivers during the interview. The ADRQL takes approximately 10 to 15 minutes to administer.
For each item, the respondent must consider whether or not the statement describes the person with AD within the past 2 weeks. The response choices for each item are either “Agree” or “Disagree.” For example, if the statement, “He/She smiles or laughs when around other people,” describes the behavior of the person with AD in the last 2 weeks, the respondent should reply “Agree.” If the statement does not describe the person’s behavior during the past 2 weeks, the respondent should reply “Disagree.”
The ADRQL should be administered using the following general procedures:
- Conduct the interview in a quiet, private place.
- Begin the interview by reading aloud the instructions on the first page of the instrument to the respondent and answer any questions the caregiver may have.
- For each ADRQL domain, begin by reading aloud the introductory statements and proceed by reading each item in the category.
- Read aloud each item clearly and slowly in order, exactly as it is written.
- Pause after reading each item to allow the caregiver to respond by saying either “Agree” or “Disagree.”
- Record each response by placing an X in the box to the right of the item in the correct response column.
- Continue in the same manner until all items of the ADRQL have been completed.
Scoring the ADRQL
The ADRQL score is based on numeric values assigned to each item. A scale value is given for each response that reflects a good quality of life. A value of zero (0) is assigned to responses that do not reflect a good quality of life. Scale values for each item are provided in the ADRQL User’s Manual. The total score for the ADRQL is computed by summing the values assigned to the responses, dividing the sum by the maximum value for the scale and multiplying the results by 100 to obtain a percentage score of 0 to 100. A higher score reflects a higher quality of life. Scores can be computed in the same manner for the 5 domains.
Rabins PV, Kasper JD, Kleinman L, Black BS & Patrick DL (1999). Concepts and methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer disease. Journal of Mental Health and Aging, 5(1):33-48. Click here for article (PDF)
Black BS, Rabins PV, & Kasper JD (2000). Alzheimer Disease Related Quality of Life User’s Manual. Baltimore, MD: DEMeasure.
Rabins PV, Kasper JD & Black BS (2000). Alzheimer Disease Related Quality of Life Training Video. Baltimore, MD: DEMeasure.
Gonzalez-Salvador T, Lyketsos CG, Baker A, Hovanec L, Roques C, Brandt J & Steele C (2000). Quality of life in dementia patients in long-term care. International Journal of Geriatric Psychiatry, 15:181-189.
Rabins PV, Kasper JD, Kleinman L, Black BS, Patrick DL (2000). Concepts and Methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer’s disease. In S. Albert & R. Logsdon (Eds.), Assessing Quality of life in Alzheimer’s Disease (pp. 51-68). New York: Springer Publishing Company. (Originally published in the Journal of Mental Health and Aging, 5(1), 33-48, 1999).
Lyketsos CG, Gonzales-Salvador T, Chin JJ, Baker A, Black BS & Rabins PV (2003) A follow-up study of change in quality of life among persons with dementia residing in a long-term care facility. International Journal of Geriatric Psychiatry, 18:275-281.
Samus QM, Rosenblatt A, Steel C, Baker A, Harper M, Brandt J, Mayer L, Rabins PV, & Lyketsos CG (2005). The association of neuropsychiatric symptoms and environment with quality of life in assisted living residents with dementia. The Gerontologist, 45(Suppl. 1), 19-26.
Black BS, & Rabins PV (2005). Quality of life in dementia: Conceptual and practical issues. In A. Burns, D. Ames, & J. O’Brien (Eds.), Dementia, (3rd ed.), (pp. 215-228). London, England: Edward Arnold Publishers.
Samus QM, Rosenblatt A, Onyike C, Steele C, Baker A, Harper M, Brandt J, Mayer L, Rabins PV, & Lyketsos CG (2006). Correlates of caregiver-rated quality of life in assisted living: the Maryland Assisted Living Study. Journals of Gerontology: Series B Psychological and Social Sciences, 61(5), 311-314.
Black BS, Rabins PV, & Kasper JD (2009). Alzheimer Disease Related Quality of Life User’s Manual, 2nd Edition. Baltimore, MD: DEMeasure.
Kasper JD, Black BS, Shore AD, Rabins PV (2009). Evaluation of the validity and reliability of the Alzheimer Disease-related Quality of Life instrument. Alzheimer Disease and Associated Disorders, 23(3):275-384.