Manuel B. Garcia

Manuel B. Garcia serves as the Senior Director for Educational Technology and Digital Learning at FEU Institute of Technology, Manila, Philippines. Read More

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Should Quality-of-Life Measures Be Collected for Future Cost-Effectiveness Analysis?

Quality-of-life data may be essential for future cost-utility analysis, but not every intervention study needs them. Learn how preference-based measures support health utility estimation, when prospective collection is worthwhile, and how to select instruments and assessment times without compromising relevance or participant burden.

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Quality-of-Life Measurement for Economic Evaluation Guide 1327 of 1349
01 · The Question

Should Researchers Collect Quality-of-Life Data Even When Economic Evaluation Is Not the Primary Objective?

A research team plans an intervention study focused on improving a specific clinical or behavioral outcome. The researchers have selected an appropriate primary outcome and developed a schedule for baseline and follow-up assessments.

During protocol review, a colleague suggests including a health-related quality-of-life questionnaire. The argument is that the data could support a future cost-effectiveness analysis, even if economic evaluation is not part of the current study's primary objectives.

The suggestion raises several questions. Would a generic quality-of-life questionnaire provide the information needed for economic evaluation? Could utility values be estimated later? How often should quality of life be measured, and would the additional questionnaire burden be justified?

Researchers must decide whether collecting these data now would preserve a meaningful future analytical opportunity or merely add measurements that are unlikely to be used.

02 · The Short Answer

Collect Quality-of-Life Data When They Are Relevant to a Credible Economic Evaluation

In Brief

Quality-of-life measures should be collected prospectively when an intervention may meaningfully affect health-related quality of life and a planned or reasonably foreseeable economic evaluation requires those outcomes. Preference-based health-related quality-of-life instruments can provide utility values used to estimate quality-adjusted life-years, a common outcome in cost-utility analysis.

However, not every quality-of-life questionnaire generates health utility values, and not every intervention study requires QALYs. Instrument selection should reflect the intervention, population, economic framework, measurement properties, and relevant decision-maker requirements. Additional data collection should be justified by its expected scientific value rather than the possibility that it might be useful someday.

03 · What You Need to Know

Understanding Quality-of-Life Measurement in Economic Evaluation

What Is Quality of Life?

Quality of life is a broad concept concerning how individuals experience and evaluate aspects of their lives.

It may encompass physical health, psychological well-being, social relationships, functioning, and other domains depending on the conceptual framework used.

Health-related quality of life focuses more specifically on aspects of well-being and functioning associated with health.

Researchers should distinguish broad quality-of-life constructs from health-related quality of life and from the preference-based health utility measures used in certain economic evaluations.

These constructs overlap but are not interchangeable.

Why Does Quality of Life Matter in Cost-Effectiveness Analysis?

Some interventions affect more than one health outcome. They may influence symptoms, mobility, functioning, psychological well-being, or survival.

Health-related quality-of-life measurement can help represent consequences that are not fully captured by a single disease-specific outcome.

In cost-utility analysis, preference-based health utility values may be combined with survival duration to estimate quality-adjusted life-years.

This can support comparisons across interventions with different health consequences, although the comparability and normative assumptions of QALYs remain important considerations.

Researchers should distinguish conventional cost-effectiveness analysis using natural outcome units from cost-utility analysis using measures such as QALYs.

What Is a Quality-Adjusted Life-Year?

A quality-adjusted life-year, or QALY, combines duration of life with a preference-based measure of health-related quality.

In a conventional QALY framework, one year in a health state assigned a utility value of 1 contributes one QALY. A year in a health state assigned a utility of 0.5 contributes 0.5 QALYs.

Utility scales are commonly anchored at 1 for full health and 0 for dead. Some health states may receive values below zero, reflecting preferences that rate them as worse than dead.

Researchers should not interpret a utility score as a simple percentage of happiness, life satisfaction, or personal worth.

QALYs are economic evaluation constructs based on particular measurement and valuation assumptions.

How Are QALYs Calculated?

In a simplified situation where utility remains constant over a specified period, QALYs can be calculated by multiplying utility by time.

Illustrative QALY Calculation
QALYs = Health utility value × Time in years
The formula assumes a constant utility over the period. More realistic evaluations may estimate the area under a utility-over-time curve, account for changes between assessments, and apply discounting when appropriate.
A utility value of 0.80 maintained for one year contributes 0.80 QALYs. A utility value of 0.65 maintained for one year contributes 0.65 QALYs. The difference is 0.15 QALYs under these simplified assumptions.

The calculation is illustrative and does not represent a finding from an actual intervention study.

In practice, utility values may change over time, and the estimation method should reflect assessment timing, survival, missing data, and the intended economic analysis.

Are All Quality-of-Life Questionnaires Suitable for QALY Estimation?

No. A questionnaire can provide valuable quality-of-life information without producing preference-based health utility values.

Some instruments measure general well-being or domain-specific functioning. Others are designed to generate health state descriptions that can be converted into utility values using an appropriate preference-based value set.

For example, the EQ-5D family of instruments is widely used in health economic evaluation because its descriptive systems can be linked to preference-based valuations.

Researchers should not assume that a generic quality-of-life score can be directly converted into QALYs.

The measurement instrument, scoring system, and valuation method must be compatible with the intended analysis.

What Are Preference-Based Quality-of-Life Instruments?

Preference-based instruments describe health states and support the assignment of utility values based on preferences elicited through established valuation methods.

Common examples include EQ-5D instruments and the SF-6D.

Different instruments may cover different domains, use different descriptive systems, and produce different utility estimates.

Their suitability depends on the population, intervention, relevant health effects, and available value sets.

Researchers should not treat all preference-based instruments as equivalent or assume that a measure used successfully in one clinical population will perform adequately in another.

How Does EQ-5D Work?

EQ-5D is a family of standardized health-related quality-of-life instruments developed by the EuroQol Group.

For example, EQ-5D-5L describes health across five dimensions: mobility, self-care, usual activities, pain or discomfort, and anxiety or depression. Each dimension has five response levels.

Responses describe a health state that may be assigned a utility value using an appropriate value set.

EQ-5D also includes a visual analogue scale that records respondents' self-rated health, but the visual analogue scale score should not automatically be treated as the preference-based index utility.

Researchers should consult official EuroQol documentation for instrument selection, administration, licensing, and scoring requirements.

What Is SF-6D?

SF-6D is a preference-based health utility classification system associated with the SF health survey family.

It can be used to generate utility values from appropriate health state information using relevant valuation algorithms.

Its descriptive coverage and measurement properties differ from EQ-5D.

Researchers should consider whether the instrument captures the health changes expected from the intervention and whether suitable valuation methods are available.

Instrument choice should not be based solely on familiarity or the assumption that all generic health measures produce identical utility estimates.

What Is a Health Utility Value Set?

A value set is a set of preference-based weights used to assign utility values to health states described by an instrument.

Value sets may be developed using preferences elicited from a specified population and valuation methodology.

Different value sets can assign different utility values to the same descriptive health state.

Researchers should select value sets according to applicable methodological guidance, population relevance, and the decision context.

They should document which value set was used and avoid assuming that values developed in one country automatically represent preferences in another.

Should Researchers Use a Country-Specific Value Set?

Country-specific value sets may be appropriate when they are available, methodologically suitable, and consistent with the requirements of the relevant decision-maker.

However, the availability of a country-specific value set does not by itself establish that it is appropriate for every instrument version or analysis.

Researchers should verify compatibility with the instrument, population, and evaluation framework.

When a suitable local value set is unavailable, alternative valuation approaches may be considered with transparent justification and sensitivity analysis where appropriate.

Researchers should not invent local utility weights or substitute arbitrary preference values.

When Should Quality-of-Life Data Be Collected?

Assessment timing should reflect when the intervention may influence health-related quality of life.

Baseline measurement can describe participants' initial health states and support adjustment for relevant differences.

Follow-up measurements can capture changes during and after intervention delivery.

For example, an intervention expected to produce gradual improvement may require assessments beyond the immediate treatment period.

However, collecting utility measures at every research contact may create unnecessary burden.

Researchers should align assessment timing with the expected pattern of change and the intended QALY estimation method.

How Are QALYs Estimated When Utility Changes Over Time?

When utility changes during follow-up, researchers may estimate QALYs by calculating the area under the utility-over-time curve.

A common approximation assumes that utility changes linearly between observed assessment points and uses the trapezoidal rule.

For example, if utility is measured at baseline and twelve months, the average of the two values may approximate utility over that interval under a linear-change assumption.

However, important short-term fluctuations may be missed when assessments are widely spaced.

Researchers should consider whether the measurement schedule adequately captures expected changes and whether additional assumptions are required.

Can Quality-of-Life Data Be Collected Now for a Future Economic Evaluation?

Yes, when there is a credible prospect that the data will support a relevant economic analysis.

For example, an intervention study may collect a preference-based health utility instrument alongside its clinical outcomes so that a later cost-utility analysis can use directly observed utility information.

However, collecting utility data does not guarantee that a future economic evaluation will be feasible.

The analysis may also require resource-use data, an appropriate comparator, sufficient follow-up, and methods for handling missing data and uncertainty.

Researchers should consider whether economic evaluation should be planned prospectively rather than collect quality-of-life data without a defined analytical purpose.

What Happens If Quality-of-Life Data Were Not Collected?

A future cost-utility analysis may be limited if the study did not measure preference-based health utility.

Researchers may sometimes use external utility estimates, mapping algorithms, or other suitable evidence.

However, mapping from non-preference-based measures introduces assumptions and may produce uncertainty or bias.

External utility estimates may also be poorly matched to the study population or intervention.

Researchers should distinguish directly observed utility values from modeled or mapped estimates and assess whether the available evidence supports the intended analysis.

Should Quality-of-Life Measures Be Used in Educational Intervention Studies?

Only when they are relevant to the intervention's intended consequences and the economic question.

An educational intervention designed primarily to improve academic achievement may not require health utility measurement if there is no plausible or decision-relevant health-related effect.

For example, a formative feedback intervention may appropriately use learning outcomes in a cost-effectiveness analysis expressed as cost per additional unit of educational achievement.

By contrast, an intervention addressing student mental health may have outcomes for which health-related quality-of-life measurement is relevant.

Researchers should avoid treating QALYs as a universal measure of educational value.

What Are the Limitations of QALYs?

QALYs combine survival and preference-based health quality within a standardized framework, but their use involves conceptual and ethical assumptions.

Utility instruments may not capture every consequence important to patients or participants.

Some measures may be less responsive to particular conditions or may inadequately represent dimensions of functioning important to certain populations.

There are also debates about the implications of QALY-based decision-making for people with disabilities, chronic conditions, and differing health states.

Researchers should acknowledge these limitations and consider whether supplementary outcomes or distributional analyses are necessary for the intended decision.

Can Quality-of-Life Instruments Miss Important Intervention Benefits?

Yes. Generic instruments may be insufficiently sensitive to particular outcomes or changes.

For example, an intervention may improve a specific aspect of functioning without producing a substantial change in a generic health utility score.

This does not necessarily mean that the intervention lacks value.

Researchers should consider condition-specific outcomes alongside preference-based measures where appropriate.

The economic evaluation should be interpreted according to what the selected measures capture and what they omit.

How Should Researchers Select an Appropriate Instrument?

Instrument selection should consider construct validity, responsiveness, reliability, acceptability, accessibility, and suitability for the intended population.

Researchers should also verify whether a suitable preference-based valuation system exists and whether the instrument can support the planned economic analysis.

Language availability and cultural relevance may be important when participants have different linguistic backgrounds.

Researchers should review official instrument documentation and relevant validation studies.

Using an instrument simply because it is widely cited does not establish that it is suitable for the specific research context.

Do Quality-of-Life Instruments Require Permission or Licensing?

Some instruments have registration, permission, licensing, or usage conditions that depend on the instrument, study type, and intended application.

For example, researchers should consult the EuroQol Group's official requirements before using EQ-5D instruments.

Other measures may have different access or scoring arrangements.

Researchers should verify current conditions directly with the instrument owner or authorized provider rather than assume that academic use is automatically unrestricted.

They should also confirm that translations and scoring algorithms are authorized and appropriate.

How Can Quality-of-Life Measurement Increase Participant Burden?

Additional questionnaires may increase assessment time, particularly when participants already complete several outcome measures.

Some respondents may experience difficulties with language, literacy, accessibility, or the relevance of particular items.

Researchers should select appropriate instruments and avoid unnecessary repetition.

Where feasible, assessment schedules may be coordinated with existing study visits without compromising measurement validity.

The broader issue of economic data collection and participant burden should be considered when planning utility measurement.

How Should Missing Quality-of-Life Data Be Handled?

Missing utility observations may arise from nonresponse, attrition, illness, or difficulties completing the instrument.

Missingness may be related to health status or intervention outcomes, making complete-case analysis potentially problematic.

Researchers should establish procedures for monitoring completeness and use appropriate analytical methods under defensible assumptions.

Where participants die during follow-up, QALY estimation requires appropriate treatment of survival and health utility over time.

Researchers should avoid assigning arbitrary utility values to missing responses or treating missing data as evidence of no change.

How Do Quality-of-Life Measures Relate to Cost-Utility Analysis?

Cost-utility analysis commonly compares incremental costs with incremental QALYs.

The resulting incremental cost-utility ratio can be expressed as additional cost per additional QALY gained when the comparison is appropriate.

However, the ratio alone does not determine whether an intervention should be adopted.

Interpretation depends on uncertainty, the relevant decision framework, available resources, and other considerations.

Researchers should also distinguish health utility measurement from broader assessments of affordability, equity, and implementation feasibility.

How Does the Time Horizon Affect QALY Estimation?

The time horizon determines the period over which health utility and survival are considered.

A short trial may capture immediate quality-of-life changes but miss persistent benefits or delayed harms.

Longer-term QALY estimation may require additional follow-up or modeling supported by external evidence.

Researchers should consider the appropriate economic evaluation time horizon before finalizing utility assessment timing.

Where extrapolation is necessary, observed utility data should be distinguished from projected future health states.

How Should Quality-of-Life Findings Be Reported?

Reports should identify the instrument, version, administration schedule, value set, scoring method, and relevant population characteristics.

Researchers should distinguish descriptive quality-of-life scores from preference-based utility values and estimated QALYs.

Missing data, baseline differences, uncertainty, and any mapping or extrapolation should be described transparently.

CHEERS 2022 provides relevant reporting guidance for health economic evaluations, while official instrument documentation provides requirements for appropriate administration and scoring.

Researchers should avoid presenting utility estimates with unjustified precision or assuming that they represent every aspect of participants' well-being.

Watch Out

Do not assume that every quality-of-life questionnaire can generate QALYs, or that every intervention study needs a health utility instrument. Preference-based measurement should be selected for a relevant economic purpose, using appropriate scoring and valuation methods. Collecting unnecessary questionnaires can increase burden without improving the study's scientific contribution.

04 · A Practical Example

Planning Quality-of-Life Measurement for a Future Cost-Utility Analysis

Hypothetical Example

A University Student Mental Health Intervention

A research team evaluates a student mental health support intervention over twelve months. The primary effectiveness outcomes concern psychological symptoms and functioning.

Because the intervention may influence health-related quality of life, the team also collects a suitable preference-based health utility measure at baseline, six months, and twelve months.

The researchers plan a possible cost-utility analysis comparing the intervention with existing support. All values below are hypothetical and are used solely to illustrate QALY estimation.

Assessment Intervention mean utility Comparator mean utility
Baseline 0.60 0.60
Six months 0.75 0.68
Twelve months 0.80 0.70
Illustrative Area-Under-the-Curve Calculation
QALYs = Sum of [(Utility at start + Utility at end) / 2 × Interval in years]
The calculation uses the trapezoidal rule, assuming linear changes between assessment points. Each interval is six months, or 0.5 years. It does not incorporate uncertainty, missing data, or additional adjustments.
Intervention: [(0.60 + 0.75) / 2 × 0.5] + [(0.75 + 0.80) / 2 × 0.5] = 0.725 QALYs. Comparator: [(0.60 + 0.68) / 2 × 0.5] + [(0.68 + 0.70) / 2 × 0.5] = 0.665 QALYs. Illustrative difference = 0.060 QALYs.
Step 1: Establish the economic rationale. The researchers determine that health-related quality of life is a relevant consequence of the intervention and that future cost-utility analysis may inform adoption.
Step 2: Select a suitable instrument. The team reviews measurement evidence, instrument permissions, population suitability, and available preference-based value sets.
Step 3: Schedule assessments. Baseline, six-month, and twelve-month measurements are selected to capture expected changes without unnecessary repetition.
Step 4: Collect complementary economic data. Relevant intervention and comparator resource use is recorded to support a future economic comparison.
Step 5: Estimate QALYs. The researchers use an appropriate longitudinal method and account for relevant baseline differences, missingness, and uncertainty in the actual analysis.
Step 6: Interpret economic value. Incremental QALYs are considered alongside incremental costs, uncertainty, and the decision context.

The illustrative difference of 0.060 QALYs represents the estimated additional quality-adjusted survival over the twelve-month period under the stated assumptions.

It does not establish statistical significance, clinical importance, or cost-effectiveness. Those conclusions require appropriately estimated effects, uncertainty analysis, and relevant cost information.

The example demonstrates why prospective collection of preference-based quality-of-life data can preserve a useful economic evaluation opportunity when the intervention plausibly affects health-related quality of life.

05 · What Researchers Often Get Wrong

Common Misconceptions About Quality-of-Life Measurement and Economic Evaluation

Misconception

Can Every Quality-of-Life Questionnaire Produce QALYs?

No. QALY estimation generally requires suitable preference-based utility values. Many quality-of-life instruments provide descriptive scores without an appropriate utility valuation system.

Misconception

Should Every Intervention Study Collect EQ-5D?

No. Instrument selection should reflect the intervention, population, intended economic analysis, and relevant measurement evidence. Health utility measurement may be unnecessary for studies without meaningful health-related consequences.

Misconception

Is a Utility Value of 0.80 Equivalent to 80% Happiness?

No. Preference-based health utility values represent valuations of health states under a particular framework. They are not simple percentages of happiness or overall life satisfaction.

Misconception

Does a Higher QALY Estimate Automatically Establish Cost-Effectiveness?

No. Cost-utility analysis requires comparison of incremental costs and QALYs, with uncertainty and the decision context considered.

Misconception

Can Any Country's Utility Value Set Be Used Without Justification?

No. Value sets may differ across populations and valuation methods. Researchers should select an appropriate value set and explain its relevance.

Misconception

Does a Generic Health Utility Measure Capture Every Important Benefit?

No. Generic instruments may overlook condition-specific changes or outcomes important to participants. Supplementary measures may be needed.

06 · What This Means for You

How to Decide Whether to Collect Quality-of-Life Data

Begin with the intervention's intended outcomes and determine whether health-related quality of life is a meaningful consequence.

If a future cost-utility analysis is plausible, select an appropriate preference-based instrument and establish measurement timing before data collection begins.

A simple decision framework

If the intervention may meaningfully affect health-related quality of life
Consider prospective preference-based measurement aligned with a credible economic evaluation objective.
If the economic evaluation requires QALYs
Select an instrument and value set suitable for utility estimation in the intended population.
If the intervention concerns educational achievement without relevant health effects
Consider economic evaluation using appropriate educational outcomes rather than automatically collecting health utility measures.
If the preferred instrument is poorly matched to the population
Review alternative instruments, supplementary outcomes, and relevant validity evidence.
If additional quality-of-life assessments would create substantial burden
Prioritize meaningful assessment times and evaluate whether the expected economic information justifies collection.

The objective is to preserve economically relevant outcome information without collecting instruments that are poorly matched to the intervention or unlikely to support a defensible analysis.

07 · A Quick Checklist

Check Whether Quality-of-Life Data Collection Is Appropriate

Before adding quality-of-life measures to the protocol, check:
Determine whether health-related quality of life is relevant to the intervention and intended economic decision.
Clarify whether the planned economic analysis requires preference-based utility values or other outcomes.
Review instrument validity, responsiveness, accessibility, and population suitability.
Verify official licensing, administration, translation, and scoring requirements.
Identify a suitable value set and document the valuation approach.
Schedule baseline and follow-up assessments to capture expected utility changes.
Plan resource-use collection if a future comparative economic evaluation is intended.
Specify methods for missing data, QALY estimation, and uncertainty.
Assess participant burden and distinguish utility-based outcomes from broader well-being measures.
08 · Frequently Asked Questions

Frequently Asked Questions About Quality-of-Life Data for Economic Evaluation

Should quality-of-life measures be collected in every intervention trial?

No. They should be selected when quality of life is relevant to the intervention's outcomes or a credible future economic evaluation.

What is the difference between quality of life and health utility?

Quality of life is a broad construct. Health utility is a preference-based valuation of health states used in certain economic evaluations.

Can EQ-5D be used to calculate QALYs?

Yes. EQ-5D health states can be assigned utility values using an appropriate value set, and those values can support QALY estimation over time.

Can SF-36 scores be directly interpreted as QALYs?

No. SF-36 scores are not themselves QALYs. Suitable preference-based derivation or mapping methods may be available, but these require appropriate justification and introduce measurement considerations.

Should quality-of-life data be collected at baseline?

Baseline measurement is often valuable for describing initial health states and supporting appropriate adjustment and longitudinal estimation.

Can researchers estimate QALYs without collecting utility data?

Sometimes, using external evidence or suitable mapping methods. However, such estimates depend on additional assumptions and may be less directly applicable to the study population.

Are QALYs appropriate for educational interventions?

They may be relevant when an educational intervention meaningfully affects health-related quality of life. For interventions focused solely on academic achievement, other economic outcome measures may be more appropriate.

Does collecting quality-of-life data guarantee that cost-utility analysis will be possible?

No. Economic evaluation also requires suitable cost data, comparison conditions, an appropriate time horizon, and defensible analytical methods.

09 · The Bottom Line

Collect Quality-of-Life Data When They Support a Meaningful Economic Question

The Bottom Line

Quality-of-life measures should be collected prospectively when health-related quality of life is a relevant intervention outcome and preference-based utility information may be needed for economic evaluation. Appropriate instruments can support QALY estimation, but generic quality-of-life scores are not automatically suitable for that purpose.

Researchers should select instruments, value sets, and assessment times according to the intervention, population, and intended analysis. The value of collecting additional data depends on whether they support a credible economic question without imposing disproportionate burden.

10 · Sources and Further Reading

Authoritative Sources on Quality-of-Life Measurement and Cost-Utility Analysis

11 · Cite this Guide

How to Cite This Guide

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