Wednesday, April 17th, 2013: Health related quality of Life

By Elizabeth Glaser, MS, MA, ACRN, RN-BC Heller School for Social Policy and Management Brandeis University 415 South Street, MS 035 Waltham, Massachusetts. USA 02453 eglaser@brandeis.edu

Part 1: Health-related quality of life

Health related quality of life- HRQOL

HRQOL- Definition Measurement types and tools:
health status measures preference-based measures

Measurement issues
Recall-bias Ordering errors, objections, invariant responses

Quality of life
quality of life subjective perception of life satisfaction

Very broad can cover aspects of life beyond health

Health
A state of complete physical, mental, and social well-being not merely the absence of disease . (WHO,1991)

Health related quality of life

Health related quality of life ( HRQOL) An individuals subjective perception of the impact of health status, including disease and treatment, on physical, psychological, and social functioning.
Leidy NK, Revicki DA, and Genest B. "Recommendations for evaluating the validity of quality of life claims for labeling and promotion." Value in Health 2.2 (1999): 113-127.

HRQOL measurement
Typically measured by one of two survey methods : Health status Preference-based or utility

Health status measures

Measure perceived general health, impairment,or disease by subjective assessment of symptoms or impairments:
Within domains which address health concepts:
Domain pain mobility ability to care for self ability to participate in daily work, school and leisure activities mood: anxiety and depression social functioning, role functioning mental health
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Health concept physical health general well-being

Health status measures

Period - Entire survey may cover a specific period or have individual questions which ask about perceptions within a specific time frame.

Viewpoint
direct survey of a person Indirect proxy survey of a child or impaired person

Health status measures

Instruments to measure health status: early instrument Sickness Impact Profile Short Form : SF-36, SF-12, SF-8 WHOQOL-100, WHOQOL-BREF

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Health status measures

Short Form :SF-8 http://www.sf-36.org/demos/SF-8.html

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Preference-based or utility measures

A generic utility questionnaire collects data on quality of life in a way that enables it to be applied to a pre-scaled matrix of health state preferences (values).(Bowling, 2001)

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Preference-based or utility measures

valuation of a particular health state the state is valued as one number scaled between 1.0 ( perfect health) and 0.0 (state equivalent to being dead)

health states worse than being dead can be scaled to less than zero.
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Preference-based or utility measures*

Utility measurement The definition and description of a set of health states of interest Valuation of health states of interest through measurement of preferences
*NICE, April 2009. Document NPR09/1103

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Preference-based or utility measures*

Applied by : Direct measurement of utilities can be for condition or disease-specific health states. Indirect measurement of utilities performed by applying utility algorithms to generic or diseasespecific preference-based questionnaires, or by mapping from a disease-specific health- HRQOL instrument onto the utility algorithm of a generic instrument such as the EQ-5D (EuroQol five dimension) or HUI2 (Health Utilities Index-2)
*NICE, April 2009. Document NPR09/1103
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Visual analogue scale (VAS)*

VAS measures a characteristic or attitude that ranges across a continuum of values that cannot easily be measured directly.

The patient marks on the line the point that they feel represents their perception of their current state.
*2001 Blackwell Science Ltd, Journal of Clinical Nursing, 10, 697706
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Community-based valuation of disease states

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Community-based valuation of highest and lowest disease states

Adapted from Salomon JA, Vos T, Hogan DR, et al. Common values in assessing health outcomes from disease and injury: disability weights measurement study for the Global 23 Burden of Disease Study 2010. Lancet 2012; 380: 212943.

EuroQol 5D

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Which should you choose?

Health status measures Outcomes for medical decision making, clinical trials, and epidemiology Preference-based or utility measures Outcomes for medical decision making, policy, resources decisions and to calculate QALYs

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Which should you choose?

In general , economic evaluations require the use of preference-based or utility measures over health status measures

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Calculating QALYs#
Utilities are used to calculate QALYs Utility of health state * life years = QALYs
Example: utility for metastatic breast cancer state = 0.85. If chemotherapy extends life in this state by 6 months, QALYs saved = 0.85 * 0.5 years = 0.425.

# Wittenberg,2010
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Simple quality-adjusted life-year calculations*

*Source: Drummond et al. 2005, Box 6.8, p. 182

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Other uses for utilities

Desk studies For retrospective studies or theoretical scenarios Where can you find data? Literature from previous studies which use utilities Global Burden of Disease or others. Using an established scale Instruments are relative
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Qualityadjusted life-years from an intervention*

*From: Torrace (1996) Fig 1 and Gold (1996) Fig. 4.2 Source: Drummond et al. 2005, Fig. 6.6, p. 173

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Use of utilities and health preference*

In practice, preferences often used as proxies for utilities Measurement differs between preferences and utilities Utilities often more difficult to measure Instruments vary (e.g., time trade off measures preferences, standard gamble measures utility)
*Wittenberg
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Survey instruments
Quick review of survey instruments: Surveys should be reliable, producing the same, or very similar results, on two or more administrations to the same respondents.

Internal reliability

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Survey instruments
Internal reliability- How well does each item hold together to measure the bigger picture , the underlying construct? measured by Cronbach's alpha Acceptable range .70-.90 <.70 the overall instrument misses the big picture >.90 the instrument questions are too redundant

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Survey instruments
Validity 4 aspects Face validity are the questions clear and easily understood? content validity-does the survey cover all aspects of the thing that you are measuring?

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Survey instruments
Validity 4 aspects criterion validity- does the test hold up over time and when compared to a known standard ? construct validity- does the survey measure what you want it to measure?

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Measurement issues- recall bias

Recall bias due to time Evaluation of the optimal recall period for disease symptoms in home-based morbidity surveillance in rural and urban Kenya, Feikin et al, International Journal of Epidemiology 2010;39:450458. collected illness data among 53,000 people during fortnightly home visits in rural and urban Kenya. Dates of cough, fever and diarrhea in the past 2 weeks and health-seeking behaviour were recorded.
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Measurement issues- recall bias

Incidence rates were modeled with Poisson regression for data over a one year period Incidence rates dropped by proximity in time to the study visit. i.e., there was higher incidence within 06 days period than 713 days before the home visit This was true across all symptoms, sites and ages.
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Measurement issues- recall bias

Recall decay was steeper for: Rural >urban sites , proxy >self-reported symptoms

Recall of documented clinic visits & prescriptions declined by 7, 15 and 23% per week in children aged <5 years ( proxy)

And 6, 20 and 16%, respectively, in older persons (P<0.0001 for each decline).
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Measurement issues - recall bias

A 2-week recall period underestimates true disease rates and health-care utilization. The authors recommendations to address this problem: Shorter recall periods no more than 3 days in children no more than 4 days in adults
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Why is this important for measuring HRQOL ?

General case surveillance surveys which ask.. in the last two weeks have you.had a fever, etc.. Would the SF-8 present issues with recall bias? For evaluation of HRQOL a longer recall period may underestimate frequency and intensity of symptoms
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Measurement issues-utility values

Ordering errors, objections and invariant responses may occur when surveying subjects to determine utility value. (Prosser and Wittenberg,2011)

Gathering data by open-ended qualitative interviews , they concluded that errors might occur due to, among other reasons: confusion with the task clashes between religious or cultural values the proffered choices.
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Measurement issues-utility values

The authors solutions to these issues ranged from computer cueing and simplified surveys, to verbal administration of surveys.

Despite the use of qualitative research to better understand the response of subjects, there was no suggestion that qualitative data may provide an additional venue for determining quality and utility in health valuation.
Wittenberg E, Prosser LA. (2011) Ordering error, objections and invariance in utility survey responses. A framework for understanding who, why, and what to do. Appl Health Econ Health Policy. 2011 Jul 1;9(4):225-41.

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Child HRQOL
Child HRQOL surveys PedsQL, EuroQol-5D-Y Developed in US and Europe EuroQol 5D-Y also tested in South Africa

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Child HRQOL
Jelsma reported less accuracy with EuroQol in South Africa then in Sweden, Spain, Germany, or Italy. Overall the results of testing the ED-5D-Y for children in 5 countries indicated: ability of EQ-5D-Y to detect moderate impairments of HRQOL is limited the instrument might not be very capable of discriminating between respondents in the general population.
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Children
PedsQL Multiple versions
Group (age range) Adult (over 25) Young Adult(18-25) Teen (13-18) Group (age range) Young child (5-7) Toddlers (2-4) Infants (13-24 months)

Child ( 8-12)

Infants (1-12 months)

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In the past ONE month , how much of a problem has your child had with
Physical functioning (problems with) Never Almost never Some- Often times Almost Always

1.Walking more than one block 2.Running

0 0

1 1

2 2

3 3

4 4

3.Particpating in sports activity or exercise

4.Lifting something heavy 5.Taking bath or shower by him or herself 6.Doing chores around the house 7.Having hurts or aches 8.Low energy level Emotional functioning (problems with) 1.Feeling afraid or scared 2.Feeling sad or blue 3. Feeling angry 4.Trouble sleeping

0
0 0 0 0 0

1
1 1 1 1 1

2
2 2 2 2 2

3
3 3 3 3 3

4
4 4 4 4 4
Almost Always

Never Almost never

Some- Often times

0 0 0 0

1 1 1 1 1

2 2 2 2 2

3 3 3 3 3

4 4 4 4 4
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5. Worrying about what will happen to him or her 0

In the past ONE month , how much of a problem has your child had with
Social functioning (problems with) Never Almost never Some- Often times Almost Always

1.Getting along with other children

2.Other kids not wanting to be his or her friend

3.Getting teased by other children 4.Not able to do things that other children his or her age can do 5.Keeping up when playing with other children School functioning (problems with) 1.Paying attention in class

0
0 0 0

1
1 1 1

2
2 2 2

3
3 3 3

4
4 4 4
Almost Always

Never Almost never

Some- Often times

2.Forgetting things 3.Keeping up with schoolwork

4.Missing school because of not feeling well 5. Missing school to go to the doctor or hospital

0 0
0 0

1 1
1 1

2 2
2 2

3 3
3 3

4 4
4 4
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PedsQL 4.0 Parent(8-12) J.W. Varni,PhD.

Proxy
Are parents or caregivers accurate proxy reporters for their children? If you took this survey when you were a child And your parent did the same to proxy report how well might the two surveys agree? Research is not clear on the answer
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How universal are the measures?

Has your child missed a meal because of lack of food or water in the house? Has your child missed school because of helping with the chores, harvest, or to care for another family member? Has your child witnessed an act of violence? Has your family had to move because of internal displacement or war?
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How universal are the measures?

Paltzer , Barker, & Witt. Measuring the healthrelated quality of life (HRQoL) of young children in resource-limited settings: a review of existing measures. Qual Life Res, DOI 10.1007/s11136-012-0260-1

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How universal are the measures?

Goal: identify and summarize instruments adapted or developed for measuring HRQOL Focus: young children (8 years or younger) living in resource-limited settings.

Seven instruments identified Six had been used in resource-limited settings.

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How universal are the measures?

Only 23 (5 %) of identified studies used one of the instruments in a resource-limited setting. Among these studies, 39 % employed an adaptation process for the use of that instrument. No instruments had been developed specifically for measuring the HRQoL of young children in resource-limited settings

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How universal are the measures?

If pediatric HRQoL instruments are to be used in resource-limited settings, it is critical that they be developed and adequately adapted to those settings.

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How universal are the measures?

Why is this important Under 5 mortality valued as DALYs by mortality and morbidity DALYs only imply what the loss to HRQOL may be

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