Lecture 4 - QoL

"Individual self-perception, position in life in the context of the cultural and value systems in which the individual lives and in relation to his or her goals, expectations, norms and interests." WHO

Gesundheitsbezogene Lebensqualität (engl. Health- Related Quality of Life, HRQoL) ist ein Konzept, das die Selbstwahrnehmung des Gesundheitszustandes einer Person reflektiert.

-- the impact of illness on human functionin

physical, psychological, spiritual, existential (Faisinger, 2000)

o   29 different tools for QoL in PP

o   Varies of number in items (132-4)

o   Length of filling (3h-5min)

o   Different domains: symptoms, well being, treatment preferences, spirituality…)

o   Questionnaire vs. Semi structured interviews (interviews less objective)

o   Mostly used in PC:

• Edmonton symptom assessment scale (short, not covering that much)

—> Mainly about physical symptoms (0 no pain – 10 worst pain possible)

—> Just one item about well being

• Palliative Outcome Scale (invented 1999, quiet old)

• 10 items Standardization and validation in several countries POS-S, African POS Domain: physical symptoms, spirituality, psychological condition

-  reporting of physical symptoms is more detailed (with list of symptoms most patients in palliative care at the end of life have)

• 2 new questions about psychological concerns (have you felt anxious about your sickness? Have you felt at peace? …)

• Two versions: in patients ( asking about last 3 days), outpatients ask about the last week (preferred one: 3 days)

• Also version for family care givers/staff

• Could be filled out alone or with help

§  How to score?

·       Overall (0-68points)

·       Subdomains

·       Individual item (item above 3 it is clinically important, very important to look at it individually!!)

• Map actual problems/actual situation, priorities Repeated measure

• we can observe change (outcome of care)

• Assessing the health condtion of patient after change in care/deteoriation – surgery, hospitalization etc.

• ·       Sometimes easier to have another source of information (people may be afraid of telling how they feel, easier to write)

Reliability α = 0,79

Item analysis – variability

Discrimination Validity (correlation with ESAS) = -0,4 (p= 0,082)

Average item difficulty = 0,4

Average correlation with total score = 0,5 r

·       Quick orientation in the situation

·       Another source of information

·       It can start deep conversation

·       Makes conversations easier (can structure the conversation, especially if patient brabbelt a lot)

·       IPOS covers different topics/issues

·       Items 3-6 are difficult to answer (keep that in mind!)

·       Time = 20 minutes

·       BUT!!! 89% of patients couldn’t fill it by themselves

•   (if you can’t speak to patient properly…)

• comparing patient-reported and clinician reported outcomes

·       But: proxy’s are worse in estimating for their beloved ones

o   Underestimating a lot in psychological condition of patient (exp. anxiety, depression, feeling at peace)