Improve health-related quality of life and well-being for all individuals.
Health-related quality of life (HRQOL) is a multi-dimensional concept that includes domains related to physical, mental, emotional, and social functioning. It goes beyond direct measures of population health, life expectancy, and causes of death, and focuses on the impact health status has on quality of life.
A related concept of HRQOL is well-being, which assesses the positive aspects of a person’s life, such as positive emotions and life satisfaction. Well-being is a relative state where one maximizes his or her physical, mental, and social functioning in the context of supportive environments to live a full, satisfying, and productive life.1
Why is Health-Related Quality of Life & Well-Being Important?
Healthy People 2020 emphasizes the importance of health-related quality of life and well-being by including it as one of the initiative’s 4 overarching goals, “promoting quality of life, healthy development, and health behaviors across all life stages.”2 It also was established as one of the HP2020 4 foundation health measures.3
The significance of quality of life and well-being as a public health concern is not new. Since 1949, the World Health Organization (WHO) has noted that health is “a state of complete physical, mental, and social well-being and not merely an absence of disease and infirmity.”4 In 2005, WHO recognized the importance of evaluating and improving people’s quality of life in a position paper.5 Because people are living longer than ever before, researchers have changed the way they examine health, looking beyond causes of death and morbidity to examine the relationship of health to the quality of an individual life.
When quality of life is considered in the context of health and disease, it’s commonly referred to as health-related quality of life (HRQOL). Researchers today agree that HRQOL is multidimensional and includes domains that are related to physical, mental, emotional, and social functioning and the social context in which people live.6
The first overarching goal for the Healthy People 2010 decade was to increase quality and years of healthy life. Measures of life expectancy and healthy life expectancy (HLE) were used to report on this goal for several populations, which relied on self-reported data related to health, including global health status, prevalence of certain chronic diseases, and activity limitations. For Healthy People 2020, quality of life is integral to each of the 4 overarching goals.
HHS agencies have begun to prioritize the evaluation and improvement of HRQOL, for example, http://outcomes.cancer.gov/areas/assessment/. Improvements in HRQOL have become a major focus in health research, with scientists, clinicians, and policy makers recognizing the importance of individuals’ self-rated experience, beyond or in addition to objective or clinical measures of health.
Promoting well-being emphasizes a person’s physical, mental, and social resources and enhances protective factors and conditions that foster health.7 Instead of the traditional view of prevention as only avoiding or minimizing illness and risk factors, well-being also focuses on disease resistance, resilience, and self-management (http://www.cdc.gov/hrqol/wellbeing.htm)
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Healthy People 2020 Approach to Health-Related Quality of Life & Well-Being
While there are several existing measures of HRQOL and well-being in use, methodological development in this area is ongoing. Over the decade, Healthy People 2020 is approaching the measurement of health-related quality of life and well-being from a multidisciplinary perspective that encompasses 3 complementary and related domains:
- Self-rated physical and mental health
- Overall well-being
- Participation in society
Although none of these domains alone can fully represent the concept of health-related quality of life or well-being, when viewed together they will provide a more complete representation to support monitoring of the health-related quality of life and well-being of the U.S. population. HP2020 continues to develop measures in these 3 areas and plans to propose additional objectives for the HRQOL/WB topic area in the year ahead.
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Self-Rated Physical and Mental Health
HRQOL is a subjective and multidimensional concept that includes aspects of physical, mental, and social health.8, 9) For Healthy People 2020, the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health Items were identified as reliable and valid measures of self-reported physical and mental health and are currently being considered to monitor these 2 domains across the decade. PROMIS is an NIH Roadmap initiative designed to develop an electronic system to collect self-reported HRQOL data from diverse populations of individuals with a variety of chronic diseases and demographic characteristics.10, 11 Currently HHS monitors HRQOL in the United States by administering selected PROMIS and other HRQOL items on the Behavioral Risk Factors Surveillance System (BRFSS), the National Health and Nutrition Examination Survey (NHANES), and the National Health Interview Survey (NHIS).8, 12, 13
What is measured?
The PROMIS item banks include more than 1,000 self-report questions covering multiple HRQOL domains that have undergone rigorous qualitative and quantitative evaluation by both patients and experts.14, 15 A 10-item global HRQOL scale was developed to assess selected physical and mental health symptoms, including functioning and general health perceptions.12 The items were derived from HRQOL item banks which provide more precise indicators of domain-specific HRQOL. All items were tested in large and diverse samples. Individual items include fatigue, pain, emotional distress, and social activities. Most of the questions ask about a person’s experience “in general” and assess self-reported symptoms within the last 7 days. The PROMIS measure provides an efficient assessment of HRQOL with minimal respondent burden and allows one to also estimate 2 summary measures of physical and mental health.12 These 10 items were administered on the NHIS in 2010 and are also expected to be included on NHIS in 2015 and 2020.
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People with higher levels of well-being judge their life as going well.16 People feel very healthy and full of energy to take on their daily activities. People are satisfied, interested, and engaged with their lives. People experience a sense of accomplishment from their activities and judge their lives to be meaningful. People are more often content or cheerful than depressed or anxious. People get along with others and experience good social relationships. Personal factors, social circumstances, and community environments influence well-being.
What is measured?
Well-being considers the physical, mental, and social aspects of a person’s life. Physical well-being relates to vigor and vitality, feeling very healthy and full of energy. Mental well-being includes being satisfied with one’s life; balancing positive and negative emotions; accepting one’s self; finding purpose and meaning in one’s life; seeking personal growth, autonomy, and competence; believing one&rsquos;s life and circumstances are under one’s control; and generally experiencing optimism. Social well-being involves providing and receiving quality support from family, friends, and others.
Healthy People is exploring measurement of these concepts at this time. Specific survey questions are being identified as potential nationally representative sources of data to develop measures of well-being for the HRQOL/WB topic area.
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HRQOL and well-being also reflects individuals’ assessment of the impact of their health and functional status on their participation in society. By measuring HRQOL through participation, quality of life is not directly equated to health or functional status but reflects, rather, the level of community integration or involvement, which is based on a person’s level of participation, taking into account their health or functional status and the environment.
Underlying this participation measure is the principle that a person with a functional limitation — for example, vision loss, mobility difficulty, or intellectual disability — can live a long and productive life and enjoy a good quality of life.17, 18 Poorer functional status can, and should not be, equated with poorer quality of life. Quality of life encompasses more than activities of daily living, health states, disease categories, or functional ability, “because it directs attention to the more complete social, psychological, and spiritual being.”17 Social participation can be assessed through a determination of the degree to which people experience barriers to full participation because of their current health state and the environment.
What is measured?
Participation in society includes education, employment, and civic, social, and leisure activities, as well as family role participation. Participation is measured in the context of a person’s current health state and within the person’s current social and physical environments, thus capturing a more objective construct of the HRQOL concept.19
Under this model, health state and the social and physical environment are defined as causal or background factors that impact HRQOL.20 Social participation and a sense of well-being are then outcome indicators that in turn reflect or define HRQOL.
Healthy People is exploring measurement of these concepts at this time. Specific survey questions are being identified as potential nationally representative sources of data to develop measures of participation for the HRQOL/WB topic area.
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1 Kobau R, Sniezek J, Zack MM, Lucas RE, Burns A. Well-being assessment: An evaluation of well-being scales for public health and population estimates of well-being among U.S. adults. Health and Well Being. 2010;2(3):272-297.
2 Healthy People 2020. Healthy People 2020 Framework. The Vision, Mission, and Goals of Healthy People 2020. Overarching Goals. Available at http://healthypeople.gov/2020/Consortium/HP2020Framework.pdf [PDF - 254KB]
3 Healthy People 2020. About Healthy People. Foundation Health Measures. Available at http://healthypeople.gov/2020/about/QoLWBabout.aspx.
4 World Health Organization. WHO Definition of Health. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948. Available at http://www.who.int/governance/eb/who_constitution_en.pdf [PDF - 335KB].
5 World Health Organization. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 2005; 41(10):1403–1409.
6 Ferrans CE. Definitions and conceptual models of quality of life. In: Lipscomb J, Gotay CC, Snyder C, editors. Outcomes assessment in cancer. Cambridge, England: Cambridge University; 2005. p. 14–30.
7 Lindstrom B, Eriksson M. Salutogenesis. J Epidemiol & Community Health. 2005; 59:240-242.
8 Ferrans CE. Definitions and conceptual models of quality of life. In: Lipscomb J, Gotay CC, Snyder C, editors. Outcomes assessment in cancer. Cambridge, England: Cambridge University. 2005:14–30.
9 CDC. Measuring healthy days: population assessment of health-related quality of life. Atlanta, GA, 2000.
10 Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., Ader, D., Fries, J. F., Bruce, B., Matthias, R., & on behalf of the PROMIS cooperative group. The Patient Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap Cooperative Group during its first two years. Medical Care 2007; 45:S3-11.
11 Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., Amtmann, D., Bode R., Buysse D., Choi, S., Cook, K., DeVellis, R., DeWalt, D., Fries, J.F., Gershon, R., Hahn, E.A., Lai, J. S., Pilkonis, P., Revicki, D., Rose, M., Weifurt K., Hays, R., & on behalf of the PROMIS Cooperative Group (2010). Initial adult health item banks and first wave testing of the Patient-Reported Outcomes Measurement Information System (PROMIS) Network: 2005-2008. Journal of Clinical Epidemiology 2010; 63:1179-1194.
12 Hays, Ron D., et al. “Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items.” Quality of Life Research 2009; 18:873-880.
13 Barile JP, Reeve B, Zack MM, Mitchell S, Kobau R, Cella D, Luncheon C, Wilder Smith A, Thompson WW (2013). Monitoring Population Health for Healthy People 2020: Psychometric Properties of the NIH PROMIS Global Health, CDC Healthy Days and Satisfaction with Life Instruments. Quality of Life Research 2013; 22:1201-11. doi: 10.1007/s11136-012-0246-z.
14 DeWalt, DA, Rothrock N, Yount S, Stone AA. Evaluation of item candidates: The PROMIS qualitative item review. Medical Care 2007; 45:S12-S21.
15 Reeve BB, Hays RD, Bjorner JB, Cook KF, Crane PK, Teresi JA, Thissen D, Revicki DA, Weiss DJ, Hamleton RK, Liu H, Gershon R, Reise SP, Lai JS, Cella D. Psychometric evaluation and calibration of health-related quality of life item banks. Medical Care 2007; 45:S22-S31.
16 Diener E, Lucas R, Schimmack U, Helliwell J. Well-Being for Public Policy. New York: Oxford University Press, Inc., 2009.
17 Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48:977–988.
18 Krahn GL, Fujiura G, Drum CE, Cardinal BJ, Nosek MA; the RRTC Expert Panel on Health Status Measurement. The dilemma of measuring perceived health status in the context of disability. Disability and Health Journal 2009; 2:49–56.
19 Kindig DA, Asada Y, Booske B. A population health framework for setting national and state health goals. JAMA 2008; 299(17):2081–2083.
20 chwartz CE, Andresen EM, Nosek MA, Krahn GL; the RRTC Expert Panel on Health Status Measurement. Response Shift Theory: important implications for measuring Quality of Life in People with Disability. Arch Phys Med Rehabil 2007; 88:529–536.
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