Clinical Staging Scales

While researching palliative care, I consistently read that eligibility is related to ‘quality of life’. I was confused as medical care and related services typically hinge on scientific data, not something as subjective as ‘quality of life’.

I asked my mother what quality of life (QoL) meant to her. She said it meant having someone who loves you, health, a good education, and enough wealth to be able to live comfortably and be taken care of. She then added freedom to her list— “freedom to do what you want to do when you feel like it”. I pressed her on this one and she said she’d like time to do what she wants to do without the confinement of responsibilities. (At the time, this alluded to caregiver burden.) I then asked her what she thought dad’s definition for quality of life would be if he could tell us. She said ‘all of the above’ and the freedom to make choices he’s capable of and being able to go outside for a walk or ride.

For perspective, I asked a couple of friends of ours, one in his late teens and one twenty. The teen answered immediately. “A wife and kids and the means to support them”, he said. The older one said he thought being able to take care of himself—independence—would be at the top of his list. He said this was directly related to not being a burden. One also included not having pain. These friends are both males. Would the gender and age of a person make a difference in the overall definition, I wondered?

Well, I still wasn’t clear on how one could define quality of life if one had dementia. How do we know what the IWD is thinking if they can’t express their thoughts due to communication issues? Would most have the insight and self-awareness to give input? Would their impressions of their situation change frequently? Or would quality of life be contingent on severity of the dementia? Would caregiver reports have to be the sole indicator?

I started digging. There are MANY quality of life instruments developed for use with dementia. Very few are based on patient reports; most use a proxy rating alone or in conjunction with patient perspectives. Some are designed to be used with mild to moderate dementia patients at home while others – those for the most severely affected or in residential settings --rely on caregiver or staff observation in residential settings and are based on level of impairment. The method for gathering information is also varied. Most are geared toward one observational period, while longer tests such as the DCM, Dementia Care Mapping, is comprised of 5-minute rating intervals over a 6-hour time frame (Ready and Ott, 2003). Most importantly, all of these assessments measure what the author of the test perceives as the definition for quality of life.

One test, the Activity and Affect Indicators of QOL, measures just what the name implies-- only activity and affect. On this test, better QoL is associated with high activity and high positive affect (Albert et al, 1996). The Alzheimer Disease Related Quality of Life (ADRQL) contains measurements for the domains of social interaction, awareness of self, feelings and mood, enjoyment of activities, and response to surroundings. This test implies that QoL is much more complicated than activity and affect alone (Rabins et al, 1999). The PWB-CIP, Psychological Well-Being in Cognitively Impaired Persons (PWB-CIP) assesses affect and behavior with three subscales of called frustrated/agitated, positive interaction, and discontent expressions (Burgener et al, 2002). At the other end of the continuum is a test called the Quality of Life-Alzheimer’s Disease. The QOL-AD includes memory and functional abilities in its expansive definition of what constitutes quality of life. The 13 items measured include physical condition, mood, interpersonal relationships, and financial situation in a brief 10-minute assessment. One notable factor of this test is how it relies on both patient and caregiver reports, with patient reports weighted most heavily (Logsdon et al, 2002).

Measurements for quality of life are diverse. Some measures are based on the premise that quality of life should decrease with the severity of dementia. I’m not sure this would always be the case, particularly when apathy is such a pervasive behavior of all types of dementia at almost every stage. Wouldn’t the inability to communicate effectively interfere in the results of such a test? What about lack of sustained attention to surroundings and/or events? If social skills endure after functional decline, wouldn’t that ensure that self-reports for QoL could endure long afterward? Caregiver reports may not accurately reflect the perception (and rating) of the patient in some areas and could significantly impact results. How do these measures reflect change over time? If palliative care is truly based on quality of life, a consistent definition and reliable, valid method of measurement seems imperative.

Sources:

Albert SM, Castillo-Castaneda CD, Sano M, Jacobs DM, Marder K, Bell K, Bylsma F, Lafleche G, Brandt J, Albert M, Stern Y. Quality of life in patients with Alzheimer’s disease as reported by patient proxies. Journal of the American Geriatrics Society, 1996; 44:1342-1347.

Burgener SC, Twigg P, Thorlton J. Measuring psychological well-being in cognitively impaired persons. Gerontological Society of America Boston: November, 2002.

Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 2002; 64:510-519.

Rabins PV, Kasper JD, Kleinman L, Black BS, Patrick DL. Concepts and methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer’s disease. Journal of Mental Health and Aging, 1999; 5:33-48.

Ready R, Ott B. Quality of life measures for dementia. Health and Quality of Life Outcomes, 2003, I:II.