Types of Patient-Reported Outcomes (2024)

Health-Related Quality of Life

One class of PRO measures health-related quality of life (HRQL). HRQL is amultidimensional19 constructencompassing physical, social, and emotional well-being associated with illness and itstreatment.20 Different types of HRQLmeasures21^,22 are useful for different purposes.23 Numerous generic health statusmeasures, such as the Medical Outcomes Study Short Form SF-36 (and related measures) andthe Sickness Impact Profile are classic examples.24^–27 This type of PROM is useful in assessing individuals both withand without a health condition. Such data allow researchers, clinicians, and others tocompare groups with and without a specific condition and to estimate populationnorms.

A health utility or preference measure is also not disease-specific. It provides ascore ranging from 0 (death) to 1 (perfect health) that represents the value that apatient places on his or her own health.28 Experts can use scores from these types of measures to calculatequality-adjusted life years or compare information to population norms.

Many PROMs are intended for use in populations with chronic illnesses.29^–31 Over the past 8 years, the PROMIS network has developeda considerable number of PROMs in physical, mental, and social health for adults andinfants, children, and adolescents with chronic conditions.32^,33 Neuro-QOL is another measurement effort focused on capturingimportant areas of functioning and well-being in neurologic diseases.34 These measurement efforts do notreference a specific disease in the items; thus, they permit comparisons acrossconditions.

Other PROMs are targeted on a specific disease (e.g., spinal cord injury) or treatment(e.g., chemotherapy).35^,36Often these instruments are developed so that investigators can demonstrateresponsiveness to treatment in a clinical trial rather than compare data againstpopulation norms or information on other conditions.37 Condition-specific PROMs often provide additional,complementary information about a patient’s HRQL.30^,38^–40

Functional Status

Another type of PROM is a functional status measure. Functional status refers to apatient’s ability to perform both basic and more advanced (instrumental)activities of daily life.41 Examplesof functional status include physical function, cognitive function, and sexual function.As with HRQL instruments, a large number of functional status measures exist, but theyvary widely in quality.42 Some mayaddress a very specific type of function (e.g., Upper Limb Functional Index) or bedeveloped for use in a specific disease population (e.g., patients with multiplesclerosis), whereas others may be appropriate for use across chronic conditions.43^–49

Symptoms and Symptom Burden

Symptoms such as fatigue and pain intensity are key domains for PROMs. Symptoms aretypically negative, and their presence and intensity are best assessed through patientreport.50 Scales characterize theseverity of the symptoms. The impact of symptoms, such as the degree to which paininterferes with usual functioning, is also a common focus of PROMs. Symptom burdencaptures the combination of both symptom severity and impact experienced with a specificdisease or treatment.50

Common symptom and symptom burden measures include the Functional Assessment of ChronicIllness Therapy—Fatigue scale, which is not targeted on any one condition. Bycontrast, disease-focused symptom indexes include the symptom indexes for various cancertypes set out by the National Comprehensive Cancer Network and a dyspnea-specificinstrument for chronic obstructive pulmonary disease.51^,52 PROMIS investigators developed the PROMIS Pain Interferencemeasure, which quantifies the impact of pain on functioning.53

Health Behaviors

Yet another category of PROMs assesses health behaviors. Although health behaviors maybe considered predictors of health outcomes, they are also health outcomes in their ownright in the sense that health care interventions can have an impact on them.Information from health behavior PROMs serves several important clinical purposes.Clinicians can use it to monitor risk behaviors with potentially deleterious healthconsequences. This information enables practitioners to identify areas for riskreduction and health promotion interventions among their patients. Health behavior PROMscan also be used to assess patients’ response to health promotion interventionsand to monitor health behaviors over time.

Health risk assessments (HRAs) illustrate how health behavior PROMs can be incorporatedinto health promotion and disease prevention programs. Defined by the US Centers forDisease Control and Prevention (CDC) as tools to measure individual health, HRAs mayconsist of clinical examination or laboratory test results as well as health behaviorPROMs.54 A recent report from the USAgency for Healthcare Research and Quality (AHRQ) identified three key components in theprocess of implementing HRAs in health promotion: (1) patient self-reported informationto identify risk factors for disease, (2) individualized health-specific feedback topatients based upon the information they reported, and (3) at least one health promotionrecommendation or intervention.55

Although HRAs have been implemented in community settings, universities, and healthmaintenance organizations, they have been most commonly implemented in workplacesettings.55 An extensive review ofHRA program outcomes concluded that, in many cases, implementing HRA programs improvedhealth behaviors and intermediate health outcomes (e.g., blood pressure); however, theevidence did not demonstrate whether using HRAs affected disease incidence or healthoutcomes over the medium to long term.55

As the emphasis on the importance of health behaviors has increased, so has the numberof available PROs developed to assess health behaviors across multiple domains. Healthbehavior PROs may assess general health by measuring risk factors without a focus on aspecific disease or behavioral category. Two examples of health behavior PROMs measuringmultiple risk factors that the National Committee for Quality Assurance has certifiedare the Personal Wellness Profile56and the Insight Health Risk Appraisal Survey.57

In addition, several large-scale health behavior assessment systems provide additionalcontext for the use of general health behavior PROMs. The Behavioral Risk FactorSurveillance System (BRFSS), created in 1984 by the CDC as a state-based system, uses astandardized questionnaire to measure health risk and health promotion behaviors. Theseinclude health awareness, tobacco use, consumption of fruits and vegetables, physicalactivity, seatbelt use, immunization, and alcohol consumption.58 The National Health and Nutrition Examination Survey(NHANES) constitutes another large-scale implementation of health behavior PROMs.Established by the CDC in the 1960s, NHANES includes health behavior surveys in additionto clinical examinations to assess health status at the population level.59

The health behavior survey portion of NHANES assesses a wide range of health risk andhealth promotion behaviors, including smoking, drug use, alcohol use, sexual practices,physical activity, dietary intake, and reproductive health practices.59 Health behavior PROMs can also assessrisk factors associated with specific diseases (e.g., smoking) or those related tospecific behavioral categories (e.g., physical activity, seatbelt use, foodconsumption). The health risk survey, an interactive computer-based survey assessingalcohol consumption and smoking,60 isone example. Another is the CAGE-Adapted to Include Drugs (CAGE-AID) questionnaire, aself-reported screening measure of substance use disorder among treatment-seekingadolescents. Its name derives from its four main questions (Cutting down, being Annoyedif people criticize drinking, feeling Guilty about drinking, and needing anEye-opener).61

A subset of health behavior PROMs assesses health-promoting behaviors. Examples of suchPROM instruments include “Starting the conversation,” a brief measure ofdietary intake;62 “Exercise asthe fifth vital sign,” a brief measure of physical activity;63 School Health Action, Planning and Evaluation System(SHAPES), a school-based self-report physical activity measure;64 and the Morisky Medication Adherence Scale(8-item).65

Patient Experience of Care

Patient ratings of health care are an integral component of patient-centered care. Inits definition of the essential dimensions of patient-centered care, the Institute ofMedicine (now known as the National Academy of Medicine) includes shared decision makingamong clinicians, patients, and families; self-efficacy and self-management skills forpatients; and the patient’s experience of care.66^,67 Measurement of patient ratings is a complex concept that isrelated to perceived needs, expectations of care, and experience of care.68^–75 Patient ratings can cover the spectrum of patientengagement, from experience to shared decision making to self-management to fullactivation.

Clinicians’ recognition of patient preferences and values can help health careprofessionals tailor treatments based on informed decisions that their patients mightmake based on those preferences. In fact, improving decision quality is one criticallyimportant step that the nation can take to improve the quality (processes and outcomes)of health care and thus enhance value for health care expenditures. For this reason,patients’ ratings of their experiences with care not only provide informationvery salient to patients and families, but they also have considerable policyimplications. Each safe practice in the updated NQF consensus report includes a sectiontitled “Opportunities for Patient and Family Involvement.”76

The three major types of patient health care ratings relate to evaluations of patientsatisfaction, patient motivation and activation, and patient reports of their actualexperiences. Patient satisfaction is a multidimensional construct that includes patientconcerns about the disease and its treatment, issues of treatment affordability andfinancial burden for the patient, communication with health care providers, access toservices, satisfaction with treatment explanations, and confidence in thephysician.77^–83 Shikiar and Rentz proposed athree-level hierarchy of satisfaction: (1) satisfaction with health care delivery,including issues of accessibility, clinician-patient communication, and quality offacilities; (2) satisfaction with the treatment regimen, including medication, dietaryand exercise recommendations, and similar elements of therapies; and (3) satisfactionwith the medication itself, rather than the broader treatment.73 Patient satisfaction has important implications forclinical decision making and enhancing the delivery of health care services; it isincreasingly the focus of research and evaluation of medical treatments, services, andinterventions.84 It is an importantindicator of future adherence to treatment.72^,85^–90 Satisfaction has a long history of measurement, and numerousinstruments are available.70^,75^,91^–99

One potentially important predictor of health outcomes is patient activation, or thedegree to which patients are motivated and have the relevant knowledge, skills, andconfidence to make optimal health care decisions.100^-102 Hibbard and colleagues102 developed a 13-item scale, the Patient Activation Measure(PAM),103^,104 which demonstrated favorablepsychometric properties in several cross-sectional and some longitudinal studies.101 Although appreciation of the benefitsof activated patients is increasing,105 commensurate support is lacking to help patients become moreactivated with respect to their health care decision making.104 Although research supports the claim thatimprovements in patient activation are associated with improvements in self-reportedhealth behaviors,101^,105 additional research is necessary tobetter understand both these relationships and their relevance to actual behavior.Patient activation, as measured by the PAM or otherwise, may be a useful moderator ormediator of PROs that will in turn contribute to performance measurement.

An important contemporary focus is on measuring patient reports of their actualexperiences with health care services.106 Reports about care are often regarded as more specific,actionable, understandable, and objective than general ratings alone.107^,108 The Consumer Assessment of Healthcare Providers andSystems (CAHPS) program is a multiyear AHRQ initiative to support and promote theassessment of consumers’ experiences with health care. The CAHPS program has twomain goals: (1) to develop standardized patient questionnaires and (2) to generate toolsand resources that produce understandable and usable comparative information for bothconsumers and health care providers. The CAHPS project has become a leading mechanismfor the measurement of patient perspectives on health care access and quality.