Patient Reported Health Related Quality of Life Measures—WhatDo the Scores Mean and How Do They Relate to Patient

Outcomes and Care?

IT seems self-evident that the medical field (eg cli-nicians, payers, researchers, policy makers etc)should value patients’ perspectives on their illnessand health related quality of life (HRQOL). Yet timepressures, the availability of other objectively stan-dardized health outcome measures, the lack ofHRQOL measures in quality improvement researchand the near absence of HRQOL measures in per-formance measurement1 implicitly and explicitly in-dicate that the voices of patients and their familiesare too often neglected. Fortunately, a growing lit-erature has established the valid development, useand utility of many HRQOL measures.

HRQOL measures are generally used to assesspatient functioning and well-being as it relates totheir health.2 Rooted in a social science perspective,2

a quality of life model values functioning and well-being as much as (or more than) physiological ele-ments of health only. HRQOL measures are inher-ently subjective. They typically ask patients or theirproxies (eg parents) to report on their own well-being and functionality across physical, psychologi-cal and social dimensions, among others.

Despite the importance of HRQOL measures,some concerns have limited their use. For example,given that these scales, by definition, measure aperspective that others cannot directly observe,some have expressed concerns about what thesescales actually measure.3 However, well establishedpsychometric methods exist to demonstrate that ascale measures what it is intended to measure (con-struct validity). Clinicians and researchers shouldbe cautious of scales that have not been rigorouslydeveloped, qualitatively as well as quantitatively.Although an increasing number of measures hasbeen developed using current standards,3,4 too manymeasures remain in use that have undergone littleto no sophisticated psychometric development.

As another concern, some have noted the diffi-culty in establishing minimally important differ-ences for patient reported HRQOL measures.5 Au-

thors have raised questions about responsiveness

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(whether scale scores can detect minimally impor-tant changes at all) and have expressed hesitationabout how to interpret the changes that do occur(whether they are meaningful). While methods existto establish interpretative guidelines in relation tominimally important differences,5 too few HRQOLmeasures have recommendations based in empiricalstudies (if they have published interpretative stan-dards at all). Finally, perhaps one of the strongestbarriers to assessing HRQOL for some, it is not clearthat changes in HRQOL always correspond to orpredict changes in physiological outcomes.6

Nevertheless, despite these concerns, a large bodyof evidence (in the adult literature at least) hasdemonstrated the usefulness of measuring HRQOL.6

For example, patients and physicians typically seecollecting HRQOL information as aiding in patient-physician communication. In addition, when physi-cians ask about HRQOL, patients tend to reportgreater satisfaction with care. Asking about HRQOLcan also assist in identifying additional morbiditybeyond the condition at hand. Likewise, askingabout HRQOL can reveal surprising patient strengths.For example, as discussed in this issue of The Jour-nal, Schaeffer et al (page 1924) found that despiteexpectations to the contrary, adolescents with thebladder epispadias-exstrophy complex demonstratedsurprisingly robust self-esteem.7 Other evidence indi-cates that measuring HRQOL can bolster medical de-cision making. However, as Varni et al noted, theability of HRQOL measures to meaningfully supportmedical decision making depends on the measuresbeing easily administered and interpretable.6 The rel-atively recent and notable increase in the use of itemresponse theory and structural equation modelingmethods has and will contribute to alleviating this andseveral previously described concerns.

Relative to classical methods, item response the-ory and structural equation modeling better clarifywhether questions on and scores derived fromHRQOL measures appear to measure what investi-

gators and clinicians expect them to measure. They

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address whether users can validly create a singlescore from an item set or whether users should cre-ate multiple subscale scores instead. They provideinformation about the extent to which questions andscores reliably measure the constructs they weredesigned to measure. By concretely linking (throughmathematical models) the (often) dichotomous orpolytomous questions on HRQOL measures to thecontinuous constructs they were intended to mea-sure, they provide more accurate and precise esti-mates of true HRQOL status. They also better ad-dress whether items and scores provide equivalentlyreliable and valid estimates of HRQOL across pa-tients with various backgrounds. In addition, thepsychometric information these models provide canhave a substantial role in an empirically based ap-proach to shortening scales8 or in allowing the cre-ation of computerized adaptive tests that also sub-stantially reduce the number of questions patientsanswer (while maintaining reliability and validity).As a result, these methods go a long way toward1) helping the field understand what HRQOL scalesmeasure and 2) delivering reliable, valid, interpre-table scores capable of detecting meaningful changes inHRQOL.

Although clinicians and researchers will be wellserved by using measures that have been developedusing item response theory and/or structural equa-tion modeling (eg PROMIS [Patient Reported Out-comes Measurement Information System] mea-sures),9 the use of HRQOL measures remainsimpeded by the fact that these measures do notalways correlate strongly with more traditional(physiological) outcomes. However, the lack of

strong (or even moderate) correlations does not in-

REFERENCES

interviewing methodology in the development exstrophy-epispadias as m

dicate the superiority of clinical outcomes.10 It is notthat HRQOL should substitute for physiologicalmeasures. Instead, by measuring HRQOL and clin-ical outcomes, one develops a more complete pictureof a patient’s health, a picture that values physio-logical and psychosocial outcomes in principle.

In summary, HRQOL should have a key role inefficaciously practiced medicine. HRQOL is a funda-mental patient outcome. HRQOL measures can aidefforts to relate more effectively to patients and im-prove the quality of practice. Therefore, the fieldmust develop, and use the most reliable and validHRQOL measures possible. Thus, the field can lis-ten directly, well, often and appropriately to thevoices of patients and their families. Unfortunately,the use of HRQOL measures in pediatric medicinelags woefully behind that in adult settings, as doesthe evidence supporting their role in health servicesand their relationship to other outcomes.6 Althoughreliable and valid pediatric HRQOL measures exist,and good reasons support the generalizability of ex-isting evidence to the pediatric setting,6 a gap in thepediatric HRQOL evidence base remains. Futureresearch can and should address this gap.

Adam C. Carle

Department of PediatricsUniversity of Cincinnati School of Medicine

Department of PsychologyUniversity of Cincinnati College of Arts and Sciences

James M. Anderson Center for Health Systems ExcellenceCincinnati Children’s Hospital and Medical Center

Cincinnati, Ohio

Supported by a National Institute of Nursing Research Grant (R15NR10631), and a National

Institute of Arthritis and Musculoskeletal and Skin Diseases Grant (5U01AR057940–03).

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