Health-related Quality of Life: Expanding a
Conceptual Framework to Include Older Adults
Who Receive Long-term Services and Supports
Cynthia Zubritsky, PhD,1 Katherine M. Abbott, PhD,*,2 Karen B. Hirschman, PhD,
MSW,2 Kathryn H. Bowles, PhD, RN, FAAN,2 Janice B. Foust, PhD, RN,3 and
Mary D. Naylor, PhD, RN2
1Center for Mental Health Policy and Services Research, Department of Psychiatry, University of Pennsylvania School
of Medicine, Philadelphia.
2New Courtland Center for Transitions and Health, University of Pennsylvania School of Nursing, Philadelphia.
3College of Nursing and Health Science, University of Massachusetts Boston.
*Address correspondence to Katherine M. Abbott, PhD, New Courtland Center for Transitions and Health, University of Pennsylvania School of
Nursing, 3615 Chestnut Street, #335, Philadelphia, PA 19104. E-mail: email@example.com
Received February 8, 2012; Accepted May 24, 2012
Decision Editor: Rachel Pruchno, PhD
For older adults receiving long-term services and
supports (LTSS), health-related quality of life (HRQoL)
has emerged as a critical construct to examine
because of its focus on components of well-being,
which are affected by progressive changes in health
status, health care, and social support. HRQoL is
a health-focused quality of life (QOL) concept that
encompasses aspects of QOL that affect health
such as function, physical, and emotional health.
Examining existing theoretical constructs and indica-
tors of HRQoL among LTSS recipients led us to posit
a revised conceptual framework for studying HRQoL
among LTSS recipients. We adapted the Wilson and
Cleary HRQoL model by expanding function to spe-
cifically include cognition, adding behavior and LTSS
environmental characteristics in order to create a
more robust HRQoL conceptual framework for older
adults receiving LTSS. This refined conceptual model
allows for the measurement of a mix of structural,
process, and outcome measures. Continued develop-
ment of a multidimensional conceptual framework
with specific HRQoL measures that account for the
unique characteristics of older adults receiving LTSS
will contribute significantly to LTSS research, policy,
and planning efforts.
Key Words: Long-term care, Nursing homes, Home-
and community-based care, Assisted living facilities
About six million older adults receive
long-term services and supports (LTSS) in their
own home, assisted living facilities (ALFs) and
nursing homes (NHs) in the United States (Kaye,
Harrington, & LaPlante, 2010). The projected
growth of the elderly population, particularly
those 85 years of age and older, coupled with
the increased lifespan of older adults with
Cite journal as: The Gerontologist
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chronic diseases and disabilities, are expected to
create a demand for LTSS that the U.S. Health
Care System is inadequately prepared to meet
(Vincent & Velkoff, 2010). Advances in medicine
and technology combined with improvements
in the management of chronic diseases continue
to increase the complexity of care needs for this
growing population (Institute of Medicine (U.S.),
2001a, 2001b; Vincent & Velkoff, 2010). Current
conceptual models of health-related quality of
life (HRQoL) using multidimensional domains
(Fitzpatrick et al., 1992; Ware, 1995; Wilson &
Cleary, 1995) have been designed to primarily
address a general adult population, failing to
take into account the unique challenges of both
the LTSS population and the LTSS organizational
environments. Functional decline, both physical
and cognitive, combined with multiple chronic
illnesses, and attributes of the LTSS organization
require an expansion of existing HRQoL
conceptual models to more fully explore the
unique needs of this population. The purpose
of this article is to present a revised conceptual
model of HRQoL for LTSS recipients.
Defining and Measuring HRQoL
Quality of life (QOL) is a broad multidimen-
sional concept that includes subjective evaluations
of both positive and negative aspects of life (Orley,
Saxena, & Herrman, 1998), including multiple life
domains such as jobs, housing, and health. HRQoL
is a health-focused QOL concept that encom-
passes aspects of health that influence QOL ratings
(McHorney, 1999). At an individual level, HRQoL
includes physical and mental health perceptions
and their correlates—including health risks and
conditions, functional status, social support, and
socioeconomic status. At an environmental level,
HRQoL includes resources, conditions, policies,
and practices that influence a population’s health
perceptions and functional status (Centers for
Disease Control and Prevention, 2000; Gandek,
Sinclair, Kosinski, & Ware, 2004). HRQoL is an
important concept consideration because it can
contribute to evaluating the appropriateness and
effectiveness of both individual and system level
interventions and outcomes (Wodchis, Hirdes, &
Feeny, 2003). Specifically, data on the multiple
domains of HRQoL can inform decisions about
innovative clinical practices, new technologies, and
resource allocation for chronically ill and disabled
older adults. HRQoL measures provide critical
data for selecting among alternative interventions
and for guiding decision making when there is
a trade-off between length of stay and HRQoL
(Adams & Corrigan, 2003; Guyatt et al., 1993).
In addition, individual outcome measures (e.g.,
physical health status), commonly used to assess
patient populations for whom cure is the goal,
often correlate poorly with self-reported health
ratings, health status, and other dimensions of
HRQoL that more closely reflect the health care
goals for the growing population of older adults
for whom progressive health change, not cure,
is the health trajectory (Gold, Siegel, Russell, &
Weinstein, 1996; Guyatt et al., 1993; Kane et al.,
2003). The ability to cope with health limitations
and personal views about the meaning and value
of life are prominent factors that can significantly
affect older adults’ perceptions of their health sta-
tus (Wilson & Cleary, 1995). Those perceptions
can also be influenced by the quality of health ser-
vices (Gold et al., 1996; Kane et al., 2003; Wilson
& Cleary, 1995). Thus, HRQoL has evolved as a
more relevant and appropriate construct to use for
older adults who receive LTSS, because of its focus
on multiple aspects of well-being that are affected
by both progressive health status changes and
the health care provided to address complex and
changing needs (Gold et al., 1996). Unlike meas-
ures that reflect health professionals’ opinions,
HRQoL emphasizes the older adults’ perspectives
of health and well-being. This construct is consist-
ent with the current emphasis on “patient cen-
tered care” (health care responsive to the person’s
wants, needs, and preferences), a principle stressed
in the Institute of Medicine reports on quality
(Guyatt et al., 1993; Institute of Medicine (U.S.),
We sought to expand a conceptual HRQoL
framework that would integrate existing HRQoL
models and include older adult-identified priorities
for outcomes. Unidirectional models have proven
inadequate in explaining causality; most experts
strongly advocate the use of a multidimensional
conceptual model to guide assessment of HRQoL.
Mathisen and colleagues (2007), for example,
argue that overall QOL can causally influence as
well as be an outcome of health status after coro-
nary artery bypass surgery. Furthermore, most pro-
posed models do not specify the linkages between
measures and very few have been empirically
tested. While a number of models have been pro-
posed (Bergner, 1985; Johnson & Wolinsky, 1993;
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Patrick & Bergner, 1990; Read, Quinn, & Hoefer,
1987; Verbrugge, 1991), few include the range of
variables that need to be included in assessments of
older adults receiving LTSS.
We selected the Wilson and Cleary (1995)
model because it offered the most comprehensive
view of pathways linking traditional clinical
variables and concepts we found in the literature
to be most relevant to the HRQoL construct. The
model specifies an outcome-derived taxonomy
associated with relevant health concepts and
hypothesizes bidirectional causal relationships
between and among these concepts. Additionally,
the model considers health concepts as existing on
a continuum of increasing complexity, a hallmark
of older adults’ health trajectories. Specifically,
the original framework’s five core domains
include biological and physiological factors,
symptom status, functional status, general health
perceptions, and perceived QOL. Emotional and
social constructs are hypothesized to have potential
causal relationships with each of the five domains;
for example, individuals with depression have
a worse QOL than those with common diseases
such as hypertension, arthritis, diabetes, and heart
disease (Ormel et al., 1993; Wells et al., 1989).
Distinguishing traits of individuals as well as the
structural and process features of the environments,
including organizations that affect the individual,
also influence these core domains. Use of Wilson
and Cleary’s unique conceptual orientation for
older adults receiving LTSS resolves the challenge
of having cure as the optimum outcome. Instead,
changes in multiple domains associated with aging,
frailty, and coping with the effects of multiple
chronic conditions are the focus for measuring
change and outcomes.
Importantly, this model has been demon-
strated to enhance knowledge about the HRQoL
of a range of diverse populations coping with
long-term health issues (Ferrans, 2007; Sousa
& Kwok, 2006; Wyrwich et al., 2009). In their
application of the Wilson and Cleary model to
patients with generalized anxiety disorder, for
example, Wyrwich and colleagues (2009) con-
cluded that this model improved understanding
and usefulness of health status for this popula-
tion. Ferrans (2007), who employed this model
to examine symptom management of patients in
cancer trials, concluded that use of such a mul-
tidimensional orientation yielded valuable infor-
mation about patients’ treatment experience and
outcomes that would not have been captured
with a more narrowly focused approach. Sousa
and Kwok (2006) used structural equation mod-
eling to validate the Wilson and Cleary model
with patients living with HIV/AIDS. These inves-
tigators concluded that the HRQoL model fit the
data and, further, that the relationships between
constructs were all statistically significant.
An Expanded Conceptual HRQoL Model for
Older Adults Receiving LTSS
We expanded the Wilson and Cleary (1995)
model to incorporate individual characteristics of
cognitive and behavioral status as well as aspects
of LTSS organizations as environmental character-
istics (Figure 1). Individual characteristics impor-
tant to HRQoL include social support, satisfaction,
sociodemographic factors, functioning, psycho-
logical functioning (Wilson & Cleary, 1995), emo-
tional status, and religiosity (Drageset et al., 2009;
Fry, 2000; Keyes & Reitzes, 2007; Soh, Morris, &
McGinley, 2011; Yoon & Lee, 2006). These factors
are also often associated with better physical and
mental health (Fry, 2000; Keyes & Reitzes, 2007;
Yoon & Lee, 2006).
Our adaptation to the individual characteristics
occurred in two core domains. First, we expanded
the function domain to recognize the importance
of cognitive ability as a factor influencing QoL,
based upon the work of Brod, Stewart, Sands, and
Walton (1999). Cognitively impaired individu-
als represent the majority of older adults receiv-
ing LTSS (Scholzel-Dorenbos et al., 2007; Sloan,
Trogdon, Curtis, & Schulman, 2004; Wetzels,
Zuidema, de Jonghe, Verhey, & Koopmans,
2010; Zuidema, de Jonghe, Verhey, & Koopmans,
2010). In the past, HRQoL measurement among
older adults has been limited to persons who are
cognitively intact because of concerns about the
reliability of reports from individuals with cogni-
tive impairment and the commensurate reliability
of proxy reports (Logsdon, Gibbons, McCurry,
& Teri, 2002). Kane and colleagues (2004) have
challenged this notion by citing evidence from
studies with cognitively impaired older adults
living in NHs that support reliable HRQoL
measurement using appropriate self-report instru-
mentation (Brod et al., 1999; Mozley et al., 1999).
Our expansion to include persons with impaired
cognitive ability will significantly increase our
knowledge base of HRQoL for LTSS recipients.
Second, we included behaviors and mood
states traditionally associated with dementia
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as a new domain. Behaviors of persons with
cognitive impairment are important to include
in the conceptual model because 83% of older
adults with a cognitive disorder also experience
often exhibited through modified mood states.
Common behaviors and mood states exhibited
by individuals with cognitive impairment include
apathy and withdrawal, anxiety, irritability,
dysphoria, disinhibition, delusions, hallucinations
and paranoia, agitation and aggression, and
activities such as wandering, purposeless behavior,
and socially improper behaviors, disturbed diurnal
or circadian rhythms that cause sleep changes,
loss of the ability to feed oneself, and resistance
to care (Mahoney, Volicer, & Hurley, 2000). These
behaviors and mood states often impact overall
QOL negatively (McCall, Cohen, Reboussin, &
Lawton, 1999) and increase the difficulty of caring
for older adults with cognitive impairment. This
increased difficulty for caregivers may be a critical
predictor of transitions to LTSS settings such ALFs
and NHs due to caregiver burden.
In addition to expanding the functional
domain to specifically include cognition and
adding a behavioral domain, we also expanded
the environmental domain to include the most
common LTSS organizational delivery systems
(home- and community-based services [H&CBS]
and assisted living and NHs). We found that
Patrick’s (1997) model argued persuasively for
assessing the environment by including both
organizational factors of the service system (e.g.,
staff composition and hours of care) and the
physical environment (e.g., size and structure) in
which the services are received, to fully explain
variation across settings.
Organizational characteristics, including the
physical environment and service delivery mod-
els, are major factors that influence the life of
the individual (Wilson & Cleary, 1995). Studies
exploring the determinants of high-quality LTSS
have sought to define key organizational charac-
teristics of the service delivery system—structure
and process features of care—that play a sig-
nificant role in the variation in outcomes (Kane
et al., 2004; Unruh & Wan, 2004; Zinn & Mor,
1998). The outcomes that dominate these studies
are health status and health service use (e.g., mor-
bidity, mortality, and hospitalization) or adverse
events (e.g., pressure ulcers). In NH organization
studies, three key organizational characteristics
Defined as the presence or absence of positive
or negative affect and the ability of the
emotional system to help to regulate and
negotiate the environment in an adaptive way
Defined as received or perceived resources
provided by others that enable a person to feel
cared for, valued and part of a network of
communication and mutual obligation, including
satisfaction with these resources
Characteristics of the Individual
Distinguishing traits, qualities or identities of a
Characteristics of the Environment
Organizational characteristics of the service
delivery system and structural features of the
focused on the
function of cells,
the state of
about their life
at a given point
Figure 1. The long-term services and supports health-related quality of life conceptual model. As developed by Wilson and Cleary
(1995) and adapted by Brod and colleagues (1999); with Patrick (1997).
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that have been linked broadly with quality out-
comes include nurse staffing (e.g., hours of nurs-
ing care; Institute of Medicine [U.S.], 2001a,
2001b), ownership type (for profit; not-for profit;
Institute of Medicine [U.S.], 2001a, 2001b; Kane
et al., 2004), and availability of hospice care
(Baer & Hanson, 2000; Mezey, Dubler, Mitty, &
Brody, 2002; Miller, Mor, & Teno, 2003; Petrisek
& Mor, 1999; Wilson, Kovach, & Stearns, 1996).
We found few studies linking organizational
characteristics and HRQoL among ALF and
H&CBS settings. Higher levels of resident sat-
isfaction were associated with smaller facil-
ity size, a moderate level of physical amenities,
greater availability of personal space, fewer
socio-recreational activities, and nonprofit own-
ership (Sikorska, 1999). Studies exploring organ-
izational characteristics in H&CBS found that
organizational characteristics related to the local
economy and ownership status (for-profit vs.
nonprofit) were significant predictors of quality
of care (Alkema, Reyes, & Wilber, 2006; Dill &
Cagle, 2010). Additionally, organizational indica-
tors associated with higher staff job satisfaction
and more positive staff views included organi-
zational cultures in which there was greater
teamwork and participation in decision making
(Sikorska-Simmons, 2006). Organizational pro-
cess features, such as the assessment and manage-
ment of symptoms also play an influential role in
the perception of and satisfaction with services
(Rantz et al., 2004).
Finally, including both subjective (older adult)
and objective (medical chart) data is paramount to
further refinement of HRQoL. Testa and Simonson
(1996) argue that each domain of health can be
measured in both objective and subjective dimen-
sions. The objective dimension (traditional clini-
cal health measures) defines a patient’s degree of
health; the subjective dimension (patient reported
health) translates health status into the QoL
experienced (Testa & Simonson, 1996). Thus,
two patients with identical health status may
have very different QoL, depending on their sub-
jective experiences, expectations, and perceptions
regarding health. It is specifically these subjective
evaluations that we were interested in captur-
ing across multiple domains. Clinically impor-
tant differences also often differ across groups of
patients as influenced by their living conditions,
levels of disease severity, socioeconomic status,
and nationality (Bowling, Banister, Sutton, Evans,
& Windsor, 2002).
Gaps in knowledge of the linkages and
intersections across and among HRQoL domains
remain undefined. As the empirical basis for
relationships between domains strengthens, the
relationships between interventions and domains
and the multiple dimensions reflecting HRQoL,
a complex multidimensional outcome, should be
tested. These relationships will be instrumental
in understanding HRQoL among older adults
receiving LTSS. Research agendas focused on
HRQoL in LTSS can take many forms. Our team’s
approach includes an emphasis on capturing the
older adults’ perspectives (voice) of their health
and well-being, interviewing older adults as they
transition to LTSS and following them over time
using instruments that measure the HRQoL
domains (specifically every three months until
death), and including persons with cognitive
impairment as a key component of the HRQoL
conceptual design. Many comparisons and subset
analyses will result, such as examining changes in
cognition, depression, or functioning over time;
examining those changes by site of care (assisted
living vs. NH); or how they interact to determine
opportunities for interventions (i.e., how treating
depression impacts function and how processes of
care by setting impacts function or cognition).
This work was supported by the Presbyterian Foundation for
Philadelphia, the Ralston House Board, and the National Institute for
Nursing Research and National Institute of Aging at the National Institutes
of Health (P30NR05043; R01AG025524).
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